Chronic fatigue syndrome 

Introduction 

Chronic fatigue syndrome (CFS)

Dr Charles Shepherd, medical adviser to the ME Association, and who has ME, describes the symptoms, diagnosis and treatments for ME, also known as chronic fatigue syndrome.

Media last reviewed: 19/03/2013

Next review due: 19/03/2015

CFS or ME?

There is some debate over whether the term chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) should be used.

Chronic fatigue syndrome (CFS) is the term often used and preferred by doctors because there is little evidence of brain and spinal cord inflammation, as the term ME suggests. ME is also thought to be too specific to cover all the symptoms.

Myalgic encephalomyelitis (ME) is the term preferred by some people who feel that CFS is too general and does not reflect the severity and different types of fatigue. It also highlights the fact that fatigue is not the only symptom.

Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. 

CFS is also known as ME, which stands for myalgic encephalomyelitis. Myalgia means muscle pain and encephalomyelitis means inflammation of the brain and spinal cord. Both CFS and ME are commonly used terms (see box on this page).

Sometimes the term 'myalgic encephalopathy' is used. Encephalopathy means a condition that affects brain function.

CFS is a serious condition that can cause long-term illness and disability, but many people – particularly children and young people – improve over time.

Who is affected

It is estimated that around 250,000 people in the UK have CFS.

Anyone can get CFS, although it is more common in women than in men. It usually develops in the early 20s to mid-40s. Children can also be affected, usually between the ages of 13 and 15. 

How it affects quality of life

Most cases of CFS are mild or moderate, but up to one in four people with CFS have severe symptoms. These are defined as follows: 

  • Mild: you are able to care for yourself, but may need days off work to rest. 
  • Moderate: you may have reduced mobility, and your symptoms can vary. You may also have disturbed sleep patterns, and need to sleep in the afternoon.
  • Severe: you are able to carry out minimal daily tasks, such as brushing your teeth, but you have significantly reduced mobility. You may also have difficulty concentrating.

Read more about the symptoms of CFS.

Why it happens

It is not known exactly what causes CFS.

Various theories have been suggested, including:

  • a viral infection
  • problems with the immune system
  • an imbalance of hormones
  • psychiatric problems, such as stress and emotional trauma

Some people are thought to be more susceptible to the condition due to their genes, as the condition is more common in some families.

More research is needed to confirm exactly what causes the condition.

Read more about the causes of CFS.

How it is diagnosed

There are specific guidelines issued by the National Institute for Health and Care Excellence (NICE) about the diagnosis and management of CFS.

NICE says that a diagnosis of CFS should be considered if you meet specific criteria regarding your fatigue (for example, it can't be explained by other conditions) and if you have other symptoms too, such as sleeping problems or problems thinking and concentrating.

The diagnosis can then be confirmed if these symptoms are experienced for several months.

Read more about diagnosing CFS.

How it is treated

There is no cure for CFS, so treatment aims to reduce the symptoms. Everyone with CFS responds to treatment differently, so your treatment plan will be tailored to you.

Some of the main treatments include:

Treatments such as these can help improve CFS in most cases, although some people do not make a full recovery. It is also likely there will be periods when symptoms get better or worse.

Read more about treating CFS.

Page last reviewed: 20/03/2013

Next review due: 20/03/2015

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Comments

The 165 comments posted are personal views. Any information they give has not been checked and may not be accurate.

loud2731 said on 23 August 2014

Why bother to put this on here when the NHS offers nothing, no treatment? NHS Drs just mistake ME for depression and when you have private tests confirming that you once had something such as glandular fever and get a diagnosed for ME, the NHS will just humiliate patients further by blaming them and still trying to wrongly treat them for depression. Things were a struggle for me for 20 years but I manage to have a life and work to a certain degree. The last 4 have been unbearable, I can now only walk to the corner shop and have not been out for a year and a half. Where are these treatment plans tailored to suit patients? There are none unless you count shouting at and blaming the patient as a treatment.

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loud2731 said on 23 August 2014

Why bother to put this on here when the NHS offers nothing, no treatment? NHS Drs just mistake ME for depression and when you have private tests confirming that you once had something such as glandular fever and get a diagnosed for ME, the NHS will just humiliate patients further by blaming them and still trying to wrongly treat them for depression. Things were a struggle for me for 20 years but I manage to have a life and work to a certain degree. The last 4 have been unbearable, I can now only walk to the corner shop and have not been out for a year and a half. Where are these treatment plans tailored to suit patients? There are none unless you count shouting at and blaming the patient as a treatment.

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DianaT1004 said on 07 August 2014

Hi my name is Diana, and I've been diagnosed with m.e/c.f.s a month ago, although I have the symptoms since January.
My doctor prescribed me antidepressants when I asked her for strong painkillers. I didn't bought them cause I don't think I'm depressed. But I made some adjustments to my life that have been helping me deal with the situation. But I still have bad days. Like today that my muscles hurt so much that I can barely move.
I was looking for specialists online for this conditions but all specialists are too far from here or too expensive.
I feel like people with CFS/ME are ignored by society. No one care about us if we don't have money to pay to specialist. There's no real support from ours GPs and no real treatments that actually help.
I know our condition is not fatal but trust me no one wants to live like this.

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leew77 said on 03 August 2014

Becky H, there is hope and solutions. Everyones solution is personal to them. It just takes time.

Mitochondria dysfunction comes up again and again as the cause for CFS. There are supplements like D-Ribose, (it works well for me), Coq 10, and acetyl l-carnitine that can help. Cod Liver Oil for Omega 3 and vitamin B too. There are loads more.

I agree with Beezle, Dr Myhills book is incredibly helpful (the best!) offering practical strategies as it does. Dr Kritina Orrs book is also useful.

There is hope Becky please dont despair. If you are scared, anxious etc asked to be referred to mental health services who can talk you through the anxiety you have. Being anxious is a totally normal way to feel. I used to think I was going to die.

Never give up hope, you are strong and can learn to manage your symptoms. A lot of people do get better.

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Beezle47 said on 01 August 2014

This article makes me so mad. There is plenty of clinical evidence that many cases of Chronic Fatigue Syndrome (and ME) stem from dysfunctional mitochondria and the symptoms can be improved immensely with a nutritional protocol. Look up Dr Myhill's Book "Chronic Fatigue Syndrome" - mitochondria or hypocondria?" Take a blood test. Get back to good health. I did.

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Veronica A said on 21 July 2014

Becky, I have had this diagnosed for 20years, but probably suffered for 40. Was very ill for 3 years, unable to work. Last 15 years have worked full time. You must learn to only use the energy you have. This varies day to day. My days are still quite short. Rise 6.30am slowly takes an hour to get everything going! am often in bed 8.30pm. Eat simple healthy food, cut down on sugar and alchohol during the bad bits. Leave housework shopping etc for another day, or get someone to help out, if you are struggling. I have had to let standards drop. You know your symptoms, listen to your body and be kind to it. It never goes away, but it is controllable with care. Good luck.

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Jelly93 said on 21 July 2014

I suffered from CFS for 3 and half years, doctors told me I would grow out of it and that it was common for teenagers to experience the same symptoms.

This is not the truth, I learnt the truth from going to just 6 sessions of reverse therapy and have been back only once in the last 5 years.

You all have the power and right to take control of your body, mind and emotions to live happy beautiful lives. Free from pain and suffering you just have to make the first step.

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BeckyH81 said on 14 July 2014

I have suffered with this for years, but only just about to be diagnosed. I live on my own and work full-time with a mortgage to pay, my Mum has MS and I have no-one to fall back on. Everything I read is negative about people leaving work and being bed ridden, please is there anyone out there who has a positive story to help me stay strong and working full time, is there any hope?

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Jaybrooke said on 04 June 2014

Sufferers of M.E. CFS should look up Hashimoto disease and ask G P to do blood test for it . Not the usual tests for under active thyroid or over active thyroid .this may not be every ones answer but it could be yours !!!

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moomoo5678 said on 01 June 2014

Hello.
I am 17 years old and suspect I have cfs/me. I am constantly tired, I can sleep constantly for 12 hours, and still feel unable to stay away from my bed for more than a few minutes. Sometimes I cannot sleep in the night, I can be waiting for up to a few hours before I get to sleep. As you can probably imagine, this is really affecting my college work and social life, as when I am in college, my work is not as good as I could do because I sometimes find it difficult to concentrate and am so drained and being social really doesn't work well when you feel like you just need to go back to bed. At college, sometimes I end up resting my head on the desk and having a little nap because I feel like I can't continue the day without it. The three days of the week that I don't have college, I usually just stay in bed. My mum and dad just think I'm lazy and can't be bothered with anything besides sleeping, which is why I'd like to try to see the doctor without them knowing. I have fallen behind on college assignments as I feel like I do not have the strength to do them sometimes, as I just need to be in bed. I also get really sore legs and I always have a bad back, which can get quite painful. I feel dizzy quite frequently, especially after doing exercise and sometimes I do not have much of an appetite compared to some people. For instance, during a 'down day' I can stomach a piece of toast and s very small meal. I feel depressed because whatever I seem to do to try to get this to subside, it will not go away. I have been told so many times by my family and friends that I am just lazy, but I think there is more to it than that.
I would really love some feedback as to what to do next, as I fear that if I continue living like this, I will fail my college course and will not be able to reach financial stability in the future.
Thank you for taking your time to read my comment :-)

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Jaybrooke said on 27 May 2014

ME was originally called yuppy flu !

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Akaboshe said on 12 May 2014

I had ME some years ago...it lasted for seven years...all the usual symptoms...arthritis, headaches muscle pain (every muscle) including pain in my eyes trying to put mascara on...sleeping virtually 24/7... Malais...stupidity, couldn't even work out why the engine was screaming down the duel carriage way in third gear...temporary allergies to things such as aniseed...anyway...for 17 months I have slept my life away...pains, headaches, stupidity...I was in denial about it being ME again...Doctor informed me today it was ME...just checked out the symptoms again and I think I accept it now...I hope it goes into remission quicker than it did last time...some people on here have had it for years longer than I did...I remember last time crawling to the settee, crying and saying "do your worst, I can't stand it anymore just take me, let me die" then a really weird thing happened, I started getting better...a bit like the old Chinese proverb! Maybe I should try it again!

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Dollydo said on 03 May 2014

I've been suffering with chronic fatigue for the last 10 years now.
All started when I was a young mum with 2 small children.
I've always been very active and an outdoor person always taking my children on long walks and to the park and always had the energy to run around after them.
Around 10 years ago I noticed that I was slowing down and our long walks were far and few and I started taking more and more daily naps as just could not get through the day without one before this I could get up at 6am and go right through to 11pm.
I had my last child 8 years ago number 3 and since then my health has just gone down hill.
Some days I can sleep all night then get up feeling exhausted and sleep all day and still feel the same.
My brain has completely gone to mush and have no concentration whatsoever to the point I had to give my nursing up that I had been studying for.
This last year Ive been suffering with ibs symptoms with really bad cramping and bloating and some days my body just seems to shut down where I can't even get out of bed because my leg joints and back hurt so much.

This illness has disabled my life in so many ways and caused me to get so depressed that many times I've wanted to end my life as I cannot go on feeling this way and feel a total failure to my children who have had to watch me becoming so weak and missed out on so much because of this illness.
I was hoping over time that things would improve but things just seem to be getting worse and at 35 I'm thinking that's it this is my life from now on and I can't get my head around it and do not want to feel this ill for the rest of my life :-(

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me ignorance said on 12 April 2014

It is truly staggering that NHS Choices which is lead by NICE Guidelines have chosen to ignore the trials by exercise scientists in the USA where a CPET Cardiopulmonary exercise test over 2 days reveals a huge drop in oxygen/exercise capacity on day 2 & how harmful aerobic exercise can be for a large subset of ME sufferers, this is medical neglect.
Check 'The Workwell Foudation' for these studies.

Also note that theses guidelines are ignoring the recently published International Consensus Criteria for ME which have hundreds of years experience amongst the experts formulating new criteria and advises patients to adapt their behaviour to avoid further damage especially in the early stages.

They are also ignoring the large data emerging of immunological/chromosone damage in a large subset & the success of the chemotherapy drug Rituximab in a small trial in Norway, larger trials are on the way.
The Norwiegan Health Dept have apologised to ME sufferers.
Neuro inflammation is now being found in ME sufferers by Neurologists in Japan.
Clear subsets are emerging, check Stanford Symposium recently, where the immune abnormaliities will show on testing.
Dr Charles Shepherd Chief Medical Advisor of The ME Association has called NICE Guidelines as 'Unfit for purpose'. This is largely due to powerful psychiatrists with much power but no evidence i.e There is no evidence that the psych is involved with the onset or continuing symptoms of ME.
This is a fact.

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britgilly said on 29 March 2014

I have been chronically fatigued since 1971. Nobody has been able to tell me why and I think I finally figured it out. I had a rubella vaccination in 1971 and believe this should not have been given to me as my immune system was compromised at the time. Ive struggled all my life with the fatigue, the brain fog, sore throats, feeling like I have the flu on a regular basis. The constant napping has destroyed my quality of life. December of 2013 I was persuaded to have a hepatitis b vaccine. Bad decision! It made me feel even worse..and I never thought that was possible. I refused to have the follow up vaccine a month later. Would like to find out what I should do next.

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tough life said on 21 January 2014

I have very severe sleep problem recently days. Since I did the MRI head scan at the beginning of December, I needed sleeping at least 11 hours a day. Despite the guideline said this scan will not harm to the body, but this is it. Recent days have seen less sleepy but fatigue still remains. When I am extremely tired but still cannot sleep. Also my headache, facial pain and dizziness are all coming out at this time. Each time when I need to get up and go to the toilet, my performance liked a drunken woman, swaying on both side and my head was trying to fall over.
I have been quite emotional after the New Year day. The mood has been uncontrolled over the years. It frustrates from time to time and I feel very hard to get on with it. I am having the depression for years but no one can recognise it and I do not want to mention it to the people. I have been trying to overcome this problem but I am not perfect person. Recently, my GP suggest transferring me to a psychologist when I saw her in November. I am pleased to see that she finally did something right for me. But since then I have not heard any news. I don’t want to see her as I always feel that doctor is letting me down. Also my chest has been feeling unwell too. I got RBBB but I have always been told there is nothing serious. My back is also painful, each time when I lead on the back of the chair, the pain started. This pain is hard to explain as it comes from the deep inside between the chest and the back. This pain is also causing shortness of breath. My neck is painful too. I am trying to adjust height of the pillow every night but still cannot get any better. Although I got all sort of devices to relief the pain, but some area is hard to do. The function of my brain has become less and less after suffer from the headache, facial pain and dizziness and my mind is totally blank all the time which affects my concentration to do thing. Can somebody tell me when this kind of horrible life will be gone?

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tough life said on 14 January 2014

I was only diagnosed with the chronic fatigue syndrome in 2008 although I have been suffering all sorts of symptoms from this disease for few decades. Now I am in a moderate to severe condition and have at least 90% of the symptoms that the definition of CFS described, therefore no need to mention here about what symptoms I have. I met a person who told me who also got CFS and she was given a 6 month sick leave recently. I was so admired her as she looked much better than me for the health condition and what I can say is that I am an unfortunate woman. I was very poor when I was studying at the university after diagnosing with CFS and I nearly could not finish the final year’s study. I asked my gp to issue a sick note to me in order to delay my course due to the poor condition. I was given the sick note saying that I was fit. I was never ever received a non-fit sick note until I gave 9 pages health history to the doctor as I thought she might not thoroughly understand what’s gone wrong with me. When I came to see her and discuss with her, despite she had already read my history but she was still not intended to write me a sick note. Although she finally gave me the sick note and I could see her facial expression showing her willingness.
The important thing is CFS is treated as a disability. But five years ago when I applied the disability living allowance, I was rejected due to the reason for I still could walk. As a result of the recent poor condition, I have no choose but to apply it again, it has still not heard any news from them since submitting the application in July 2013.
Stress is another major problem causing my disease even worse as far as I concern. There is no way to get rid of it because of the disbelief I have been given. I have been very upset and sorrow recently as I don’t know what would happen next. My whole career has been ruined and I have been suffering from the poor health and financial conditions which I never expected to see like this.

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delrosa said on 08 January 2014

I was diagnosed with CFS in 2004 and I have experienced the pains you describe in chest and stomach, difficulty standing along with many other symptoms described by others writing here.

The worst thing, in my opinion, is the depression that comes with this strange illness. I felt down because not being able to do what I wanted to, because of the pain, overwhelming tiredness, disturbed sleep, heavy feeling, dizziness and just not functioning as I did before. My self esteem and confidence also became low and brain function seemed muddled and slow.
Since this diagnosis I have done my best to make a recovery - a full one. I have experimented with loads of things that might help including diet, alternative therapies and anything I read about that has helped others. My GP prescribed anti depressants but the side effects were horrendous so I stopped them. I take painkillers when necessary otherwise I have not taken any medication.
I have had periods when symptoms have been mild and I was able to resume full time work but then had a 'crash' when symptoms became so severe I could not work at all.
I then tried QI Gong, which has given me much release of physical and mental symptoms. I have had CBT and have used diaries to monitor effects of different activities, situations, diet and exercise. I have changed not only my diet but how and when I take meals. My attitude to the illness has changed completely and so has my life.
I now go out to work part time and make money in other ways that allow more freedom to when I do it and so I can do it in short bursts. Which is what the diaries revealed was the best for me. I take periods of rest and meditation which refreshes me even if sleep is a problem. I exercise every day. dance and walking mainly.
Life is amazing again and getting better all the time. I have somehow made a cocktail of changes that have worked for me. I hope this gives you the incentive and hope to keep tying to find something that works for you.

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CAGS22 said on 08 January 2014

I think I may have CFS. Have just read a load of comments and I have most symptoms:
•Bowel problems.
Have had diarrhoea my whole life, gp thought it was IBS.
•Have had ladds procedure when I was 13 & a hernia when I was a baby.

•I'm now 23 and I am constantly tired,
•get brain fogginess all the time, which leads to lack of concentration.
•really bad headaches occasionally, last month I had a few in work and had to take 2 painkillers and it was still there then another time I had to go home because of the pain.
•nasal and throat catarrh constantly which makes my voice quieter,low and a little breathy & catarrh makes it hard to swallow
•blocked ears
•pins & needles
•joint pains
•lack of enthusiasm
•dizziness
•trouble sleeping due to insomnia and never being tired at bedtime.
•this leads to sleeping in through the morning if I have a day off and being late if I'm at college in the morning.
•it takes me twice as long to do simple tasks because of mental and physical fatigue.
•mild depression
•nausea and feeling ill/ terrible most mornings, it fades through the day or if I try to ignore it.
•sometimes I get so tired and brain foggy that it makes me cry, it's not sore just exhausting and infuriating.
•Sometimes I feel like I have the energy of an old person who's bed bound (I'm not thankfully).
•also in the morning I have to go to the bathroom more than once or twice or just sit there for half an hour or so, this makes me worry that I'm going to be late then worrying makes me need to go again which results in me being late to most things in the morning.

I have a doctors appointment in two weeks and am telling my gp about this discovery, I'm also hoping to clear things up by either getting a diagnosis or referral to the hospital for some tests. Fed up feeling like this and it's just going round in circles.

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Eagle1 said on 02 January 2014

My doctor told me that I have CFS of April last year after many blood tests, which came back normal. I would like to ask anyone if their symptoms include the following, when tired do you suffer from pains in the chest and stomach that take your breath away-and I find it difficult to stand . The only way that I can get comfortable is by laying flat and resting until these pains ease. I work full time and I have a family to care for, sometimes when I finish work I am so tired I just want to go to bed but I push myself to cook and clean. I don't like to complain and there are people out there that are worse than me but sometimes it really gets me down as I am only 31 and should be able to do more in life.

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MBZ said on 31 December 2013

I have suffered from extreme fatigue since age 15. I have never had a day since then where I wasn't extremely fatigued for the duration of the day. At age 21 I developed severe sleep problems. I am now 50 and have never had a restful night's sleep nor wakened up refreshed since then, except once: around 2 or 3 years ago I had an operation (just a day case but with full anaesthetic) - I have no idea if it was the anaesthetic, the oxygen in recovery or whatever but for the whole day afterwards I was not even slightly fatigued, my head was so clear and I was not at all cold or shivery (I am pretty much always cold!). When I got home I kept waiting for the usual symptoms to come on but I was completely free of them. Next day I was back to normal. I have occasionally looked around online for similar cases of this sudden (albeit temporary) disappearance of symptoms related to surgery/post-surgical recovery or for someone who may be interested in this as part of their research but nothing obvious has come up.
In general, I suffer from digestive problems, lack of concentration, dizziness, shivering and feeling cold, allergies, constant nasal catarrh etc. The fatigue has gradually become worse over the years and is now overwhelming. Although I have mentioned my fatigue symptom to many GPs I have never had one take more than a superficial interest in it - when blood and other tests are carried out for other symptoms and come back normal then it's a case of just putting up with the symptoms. I rarely mention it now to them as a major symptom although it is the most debilitating symptom I have. I work full-time (though this increasingly hard to do) and stay fit - the exercise does intensify the fatigue but it is bearable and I think being unfit/overweight will lead to worse problems in later life. I eat a healthy varied diet and no longer follow fads about supplements/exclusions because none of them have ever worked and have occasionally caused digestive problems to worsen

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iuernd said on 21 December 2013

As far as I know, the underlying cause of CFS/ME is still unknown by scientists, and as one of the common symptoms a severe food sensitivity problem has been developed for most of the CFS/ME patients.

I wonder whether any of the CFS/ME patients have tried baking pasta as a bread replacement from gluten-free flour without using yeast.
Would that improve the CFS/ME patients' condition?

Are there any of the patients whose system is impaired such that perhaps they can't even absorb minerals like calcium (Ca) properly?
Have any of those patients tried drinking still, neutral (has pH of about 7) mineral water, which is very low in minerals, especially in calcium (Ca)?

I have never studied medical science, so I recommend you to ask your GP or physician about it.

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inyabass said on 13 December 2013

In Easter 2012 I had some kind of short-lived viral infection whilst visiting a friend. Since then I have suffered with dizziness, wooly-headedness and can sleep for England. I don't have muscle pain but most of the symptoms I have fit CFS. It's driving me round the bend feeling like this. I also get bouts of depression, stomach issues, constipation and a general feeling of nausea especially in the mornings. Am off to the doctors in a couple of weeks when my anti-depressants are fully working to see if he agrees with my self-diagnosis. Either way I can't go on feeling like this.

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safabaz said on 30 November 2013

I am actually in tears from reading the info and comments on this page. I have been suffering from what I call a nightmare for the past 2years and it has literally ruined my life, physically, mentally, socially and financially. I have been suffering from joint pains, severe muscle pains, migranes, insomnia, vertigo, depression, panic attacks, heart palpitations, severe lack of energy/fatigue, IBS type stomach pains and I would forget the most simplest things. Along with the foggy brain my concentration levels have gone incredibly low. I am clinically depressed atm and most of that reason is because of what I had to give up due to being so tired all the time.. This really has ruined my life, even more so at the fact that I have gone thru so many tests at the hosp and they found nothing apart from calcium and vitamin d deficiency. My doc told me this was to explain everything that was happening to my body, and that a few months after taking the right vitamins shud bring it right back to normal levels, then hopefully I'll feel great. I re-took blood tests and the results showed thst everythong was up to scratch, only I felt very far from scratch, felt no difference at all. My energy levels were still of a 75 year old and I'm only 25. This affected me emotionally more than before, as I know theres something wrong with me, yet tests results show im fine! How can this be! Could I be crazy?! My doctor always looks at me funny when I see him with a different issue, as if I'm making it up he keeps referring to my results that 'obviously' shows I'm fine. This really upsets me as I feel so alone. Fam & friends think im the laziest person ever and I've lost many ppl due to them thinking iv lost interest in them when really my lack of energy disallows me to go out as much and my headaches doesnt allow me to have phone conversations. By coming across this page, for one I now have proof that there is an explanation! And im not crazy :) I sure will b havin words with my doc!

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nancyblake said on 29 October 2013

ME - Myalgic encephalomyelitis is the name given to this illness by Malcolm Ramsay, the Consultant Physician at the Royal Free Hospital at the time of the 1955 outbreak. It was clearly a physical disorder with many neurological symptoms. Unfortunately a paper by McEvedy and Beard put forward the view that the Royal Free outbreak was a case of 'mass hysteria'. Ever since, psychiatrists have insisted that it is a case of something now labelled 'Somatoform Symptom Disorder' in DSM 5. Ramsay was unequivocal that complete rest at the beginning gave the most favourable prognosis, and that continued efforts to keep active resulted in a worsening of the illness. Recent research confirms this. The best advice is to keep activity within the limits of the amount of energy you feel you have on any given day, and this has been shown to result in a long-term increase in available energy/activity. Adapting everyday life to conserve muscular exertion can allow the possibility of continuing your most important activities. Supplements such as fish oil and CQ10 can help, but conservation of exertion is the key. Look into patient advocacy groups - the Tymes Trust has the best advice - and look at the research done by Maes, Twisk, Snell. Especially Jason, doi:10.1080'21641846.2012.733602.
Go onto the ME/CFS Knowledge site.

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pat1956 said on 24 October 2013

I stumbled on this site while browsing the web for information on some of my problems, never realising that they could all be connected, what's more my doctors have not realised that they could all be connected either.
I have been back and forward to the doctors since Sept 2012, Mental & Physical exhaustion, joint pains, feet so sore unable to put them on the floor, unable to use hands as joints are so painful, severe headaches, insomnia, foggy brain, lack of concentration, stomach problems similar to IBS, depression, panic attacks, crying, dizziness, excess sweating, difficulty to control body temp, one minute shivering every few seconds, next excessive sweating, severe chest and stomach pains, I have felt so ill that I sometimes feel that the easiest thing to do would go to sleep and never wake up again.
I went on sick from work in January 2013, and in February felt so ill I gave up my job, I am still back and forth to the doctors, I have undergone numerous tests all of which are negative, the latest being scans for the chest/stomach pains again which were all clear, I am due back at doctor's next week, maybe now I can tell them what's wrong.

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CasC said on 21 October 2013

It is excellent that you have Dr. Charles Shepherd giving such a clear and sympathetic description of CFS, but the article is leg down by the fact that two of the three treatments given here are not helpful to the vast majority of sufferers, best case scenario no change, worst case scenario and by far the greatest is that they actually do harm and people regress using GET particularly. Dr. Shepherd has experience of the trials and statistics here and would agree. Shame there is no mention of pacing, for example, which is the best place to start with treatment.

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kirbyann61 said on 09 October 2013

i have joined today as i have recently been told i have cfs/me from the comments i seem to be very lucky as my consultant has been brilliant we have a specialist nurse and team who deal with this and i will be attending a 6 month rehab with physio andother specialists, i dont really understand this condition yet and as like many others didnt really understand or believe in such a condition, my symptons have gone on since i was ill 2 years ago, the tiredness thats not just a normal feeling of being tired, my concentration, my ability to forget a simple word just cant seem to bring it in my mind, really bad headaches joint pains cannot even change a bed without suffering for days i feel very isolated as i know nowone else who understands this feeling

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Snow Cat said on 30 September 2013

With regard to the comment posted by azteq on 18 September 2013, I think it makes no difference whether a person liked or disliked what they were doing prior to becoming ill, or whether they chose to do what they were doing or whether things happened to them (without choice), because I think it has already been established that placing demanding workloads on the body can cause illness.

I think what I have previously said about boredom, etc. is correct, that it does seem to make the condition worse, and in some cases might be the cause of it.

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cable06 said on 26 September 2013

I have been suffering from fatigue pain temperatures and palpitations for around 8 months now. I have been back and forward to the doctors had numerous blood tests and they have all come back negative. I have now been referred to an me specialist but as there isn't one in the area I am having to wait to see if I can get dunding from the welsh assembly to be seen. I am struggling to maintain work my hrs have been reuced considerably but after only 3 days last week of 3 hrs a day I have been off work again for another week. Some days I am unable to get out of bed, struggle to wake have incredible pain in my joints and muscles and on top of this I have arthritis from the hips down. I am completely frustrated as I have been referred for graded exercise but they have said because of how I am suffering there is little they can do for me at the moment as I am at risk of making it worse. Ioften find that if I manage to get up once I have showered I am ccompletely worn out and often find I cannot keep awake or I am in considerable pain amd cannot get comfortable. I try to increase my activity and get back to work but I find that even minmal hours leaves me exhausted and needing to sleep when I get home andcannot do anything with my children which is soul ddestroying. I used to work full time with great prospects but I have recently lost my promotion due to not being reliable to be able to work. I am concerned about working and I am unsure what to do next. If I was off work I wouldget llots of help but as I want to remain in work I get nothing. However with the way things are going I don't know how long I can maintain my job. How long qillmy employers put up with it. I have been told it could take up to 12 months to be seen ro even get a diagnosis and I find myself in ccomplete dispair on what to do. The more I try and get back to work the worse I get. It is never ending. The longest I have managed is a week without having to leave early or go off sick. advice would be gr8

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azteq said on 18 September 2013

I’ve just been reading the posts left on this site, and felt I should make a few comments.

Please remember the comment at the head of the column: “The xxx comments about ‘Chronic Fatigue Syndrome’ posted are personal views. Any information they give has not been checked and may not be accurate.” I believe one or two posts are particularly misleading, but they are a personal opinion so cannot be deemed offensive or unsuitable.

Like many other sufferers, I believe that CFS and ME are separate but not mutually exclusive – you can have either, or both. From my discussions with fellow sufferers I'm led to the conclusion that most ME patients also have CFS, but some CFS patients don’t have ME.

Snow Cat’s opinion (8 Aug 2013) that CFS is a psychological illness would seem to be held despite the information on this and the NHS main website, the World Health Organisation definitions for ME and CFS, and ME / CFS websites world-wide to name but a few. I particularly take exception to the ideas that sufferers have, or have had: “a stressful anxious lifestyle, traumatic events, or having little to look forward to in life, perhaps because of a lack of money or other social restrictions” (7 Sept 2013), and: “the disease seems to be made worse by routine, monotony, and boredom” (27 Jun 2013). Sorry chum, most of us were perfectly ok before we were taken ill. It is the illness which stops us doing what we enjoy - not the other way round. But having the disease can have psychological effects - sometimes it really gets you down.

On the bright side, there are a few good pointers in the posts (based on my experience). For example: finding out if changes to your diet can help lessen your symptoms, or exploring complementary therapies - they seem to help some sufferers. Keep in mind we still know so little about this disease. Do as much as you are able, but stay within your limits. Above all, try to keep a positive attitude and remember that success comes in cans – not can’ts

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Paranoid Attention Seeker said on 17 September 2013

@Snow Cat Hey. I'd describe my symptoms to have been between all three of the categories at different times. Meditation and chi gung/tai chi had a positive effect on me, along with other expressive things (don't forget to find interesting things and enjoy yourself) and over time I regained my health, I'm still carrying a few muscular/postural issues from being stagnant for so long though, gradually improving. Chi Gung (taoist yoga/energy work) practice had a profound effect on me energetically, physiologically and muscularly. It's what worked for me and for 5 years nothing else worked (things your ignorant physiotherapist probably makes you do) if not cure I have full confidence the practice of moving your conscious attention more deeply into your body will have at the least a very positive effect on your condition. You need exercises that heal , not ones that destroy the body and rebuild muscle. The greatest deception with the western perspective on disease is the dissection and separation of the body, the nervous system, the mind, the body and it's energetic systems work in accordance, not independent of each other. treat them like that and trust yourself, and your body's ability to heal itself. Find balance. That's my take on things, I was given a gift in a form a didn't like, and it wasn't till I accepted it and used it to become stronger that I was able to see my own way and appreciate the illness. I hope you try tai chi and chi gong, be persistent, practice everyday, and make sure you learn from books and teachers. Don't forget to breath deeper. Peace. I hope my rantings point you in the right direction

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Villamoura said on 07 September 2013

Dear Lizamy - I also get what you describe as an air bubble under my ribs. It's a painful cramp which does subside after a minute or so, so long as I don't move and take quick breaths. My GP told me that happens when you have IBS, so it may be worth you looking into that?

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Villamoura said on 07 September 2013

Hi Id just like to say how reassuring it is to read all of your comments and relate them to my symptoms, as sometimes I feel my condition makes me feel very isolated from what goes on around me. I was very unwell about 5 years ago when I was 37 yrs old. After obscure blood tests which all came back clear I was told I had a severe virus, which hospitalised me on 2 occasions. My symptoms at the time were tonsillitis, severe burning sensation in my scalp, heavy neck, numbness, crying constantly and extreme fatigue/anxiety. Tbh I thought I was dying. I was told to take betablockers, amytriptalene and dolsulapin. Eventually after quite a long time some of my symptoms subsided and after 3 months I was able to return to work, phased return. 5 years on I am still taking Dolsulepin 25mg/day as I become poorly confined to my bed if I dont take it. My GP told me I have CFS/ME post the virus. I have however just recently become ill again. Symptoms are: severe constipation, painful bloating in my stomach, horrid headaches, backache, weeping and extreme tiredness. I've had blood tests etc and everything is normal. I believe Im having a flare up of my CFS/ME and my GP has increased my dolsulapin to 75mg/day. It's too soon for me to know if Im getting any better. All I know is I can't physically work, feel rubbish & am extremely tired. I have no enthusiasm for anything. I live in hope there is a light at the end of the tunnel. If anyone who reads this knows of any natural remedies that may help me I would be so grateful & if anyone wants to chat I've got a good ear! Regards

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Snow Cat said on 07 September 2013

With regard to the specific symptom of feeling tired/a lack of energy for more of the time than which would be considered normal, I think the body’s natural response to that sort of feeling would be either to rest, either in bed or to just sit around, or to sleep – basically to be inactive -, and also to eat more, because calories provide energy, and more calories should therefore provide a person with the energy they feel they are needing. It seems as if something is making the person be a ‘couch potato’. Being inactive I think reserves calories, and eating more food I think increases the calories a person should be having, which basically seems to be a ‘double whammy’ way to put on weight.

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lizub said on 05 September 2013

Hi I was diagnosed with CFS when my baby was 10 months old, I had a constant sore throat for months that kept coming and going really sore aching joints very tender breasts even t hough I wasnt due on my period. My daughter is now 9 years old I was on Tramodol and Amitriptaline amongst other drugs my doctor put me on for 4 years until last year. I tell you know one will understand you unless they are suffering too I found it very frustrating and hard to tell people because you feel like your moaning all the time I'd have a face like thunder all the time constantly frowning with pain and felt like an old woman I was 38, Im now 46 my husband had been speaking with his Osteopath and he told him about a treatment for ME it uses Massage and Accupuncture and there is a book Called The Perrin Technique Raymond Perrin studied the symptoms of ME for 20 years he realised that there is a connection to the malfunction of the Lymphactic drainage system I urge all you suufers to look into it my husband begged me for 7 years to see his Osteopath and I thought it was a load of old rubbish however I went last year in desperation when I couldnt stand the drugs and suffering no more Tramodol was making me worse I had a migraines 3 times a week My Osteopath trained in this method and with in 3 months I was a different person The first month of treatment I was bad because all the toxins were being circulated and I felt so ill so It did make me bad at first I had to have time off work but I also came off meds he said it will take up to 18 months depending how bad I was It took a year I do still have off days during my period but this is hormonal with a little headache but he shown my husband what to do not Accupuncture but we do do cupping which is brilliant and he massages me to get the Toxins built up in my body to circulate better into my drainage system which means breast massage I say try it it saved me my doctor will didnt believe it in well I proved him wrong.

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User799353 said on 28 August 2013

By the way everyone, don't bother complaining to the GMC. You will waste your time. Its not surprising there are places like Stafford hospital when all complaints no matter how rational are completely deflected, ignored, or otherwise. CFS affected people should now summon all your energy to fight for your rights here to get appropriate treatment. Sick of being polite.It doesn't get you anywhere.

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User799353 said on 28 August 2013

I have had chronic fatigue with worsening symptoms now for over 10 years. Have not been officially diagnosed and it has ruined my life.I am male late 40s,Condition has prevented me having a family, reduced libido plus all the usual symptoms of lack of stamina meaning work capacity limited.have had nothing to help from any GPs apart from being given anti depressants and sent for useless misdirected testing. Its about time people got fair treatment for this.I am now considering suing nhs for medical negligence because my complaints of low libido, lack of capacity to do anything,dizzyness and recent nauseau have been largely dismissed as trivial. My first realisation that something was wrong followed from increasing extreme tiredness/fogginess day after sex or exercise.THIS WAS 10 YEARS AGO !!! I have low red blood/borderline. low testosterone for my age, low cortisol, and tsh is 3.5. Read recently DR MYHill article on mitochondrial damage and repair treatments.I am going to ask my gp for all the neccessary b vit injections, magnesium and other measures he suggests plus his test for cfs. If he refuses then i sue, and I recommend anyone else getting innapropriate NHS treatment to do the same, and use the money to get some properly informed treatment.GOOD LUCK

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WardM said on 23 August 2013

Hi everyone

I'm hoping someone can help or give me some advice. I've not long joined this group, after being diagnosed in September 2012 aged 30.

Ive been ill over a number of years (all doctors stating it's a virus and would pass with rest) before seeking a second opinion then having several appointments with a doctor at George Eliot Hospital which i felt had no empathy towards me and how M.E had not only effected me, my husband and two children. He agreed after taking more bloods to rule out other conditions, which i had all before at my doctors, then sent me away telling me to read a book on the condition and that my doctor could continue with my care.

Throughout my battle to get answers i tried to hold down a part time job in a school and trying and live a normal life, until having more and more time off work came to a hold after having 6 weeks off on the sick being bed bound for most of this time, or walking like a old lady with crippling arthritis.

I left work in February as i felt that i was being backed into a corner with no give and it was easier for me to hand my notice in than be given the sack, this was not a quick decision.

My doctor is very understanding and ensures i have regular reviews with her, which i can't thank her enough. Im very lucky to have a good doctor as i've read alot of peoples posts saying they don't.

My reason for this post is to see if anyone else has been to citizens advice for benefits? told DVLA they have ME, as ive read i can have my licence revoked. Also I tried to get life insurance and was told i do not qualify due to having ME.

I have an appointment on the 3rd Sept at Citizens Advice, so was looking for questions that i should or maybe asking when im there.

Sorry for the long essay :)

Thanks in advance for any replies

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lizamy said on 23 August 2013

I wonder if this is what I suffer from. I suffer from extreme fatigue, I go to bed exhausted and wake up still exhausted and do have a immune disorder, but I also have a feeling of having an air bubble under my ribs on the right hand side

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Unsystematic said on 20 August 2013

The symptoms here of CFS are missing. No wonder my GPs think I'm able to work and need to see a shrink as I'm not working. which has messed my relationships with family and friends as this has given them the idea that its mostly in my head and am crazy. Great.

For the people who need more help an absolute awesome life saver for me (especially the brain fog) has been (in order? of perceived effectiveness) 8 or more hours sleep, organic cocoa powder, D-ribose, co-q10, Fish oil, hobby/gradual exercise and a healthy/stone age diet. I'm not cured but feel 80% relieved of symptoms and year by year recovering. Much love to you all, there is some hope for us X

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bexy91 said on 20 August 2013

i have been having just 3 hours sleep a night for over a month! im so tired and falling asleep at work! i cant even write a sentence with out things going blury or my eyes rolling into the back of my head! i dont know what to do :( could it be cfs?

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Arty_c said on 13 August 2013

I'm so glad to have read all the comments on here, it is reassuring to know other people are suffering with this awful disability. Im 24, have been referred to a CFS therapy group that help manages the illness. I find CFS very frustrating as it restricts every aspect of your life. Im 24 and have had to prospone my studies due to the illness, I got to the point where I was struggling to get out of bed, feeling dizzy, forgetful, extremely confused and just couldn't find the right words when conversing the most annoying thing was my lack of concentration. I want a career in design, it is something I'm extremely passionate about and enjoy, so it doesn't feel like work at all. but the fatigue has taken over and I just couldn't cope. the university has been extremely accommodating, as they have experienced a past student with the illness. but I am extremely concerned that it will not go away and prevent me from succeeding in my career and achieving. Have people got over CFS and what has helpd?? I would love to hear from you and suggestions. Thank you.

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Snow Cat said on 08 August 2013

A diet which is low in sugar seems to help- any sugar including fruit. If nothing else it seems to help with IBS. Currently I feel convinced the disease is 100 percent psychological even though there are physical symptoms. What I mean is that although there are physical symptoms which are real I think at its root the disease is psychological and I would go as far as to say 100 percent psychological the trigger, as many people have already said, being a stressful anxious lifestyle, traumatic events, or having little to look forward to in life, perhaps because of a lack of money or other social restrictions. I think the disease is actually caused by that.

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A P said on 06 August 2013

With all my past 10 years of suffering from cfs and consulting GPs and specialists, I realised that there are a few tests that must be carried out and if diagnosed they should be treated as soon as possible are: hemoglobin, vitamin d, calcium, vitamin b12, thorough hormonal, cortisol, thyroid, blood sugar and insulin resistence. Antidepressants, epileptic medicines (lyrica) better be avoided if possible as they numb nerves and senses but it must be consulted with the doctors first as in some cases Lyrica has helped in some patients.

Along with that, regular stretching, gradual exercises and keeping oneself busy with some possible activity will contribute to the healing process. Healthy diet will help in general well being and will help fight against infectious and life long diseases. In my case herbal treatment, homeopathy, acupuncture, chiropractice, osteopathy nothing worked

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cfspatient said on 27 July 2013

Many CFS patients have food intolerance. As far as I know food intolerance is often caused by toxic materials or by certain drugs and medications, such as antidepressants, sleeping pills, tranquilisers, antoconvulsant drugs, antiepileptic drugs, antipsychotic drugs, etc.

Is it possible that any of the above mentioned ones caused CFS for some people?

If you think that it is worth ruling out this possibility and if you can't rule out that any of the above mentioned things could get into your system somehow, then perhaps it is worth considering seeing a specialist.

However, let me emphasize that there is no need to panic as this is merely a possibility to rule out and it is just a layman's idea. A doctor shall be able to tell you whether this idea makes sense at all.

Certainty is better than uncertainty, and I guess you lose nothing with seeing yet another doctor, right?

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Snow Cat said on 23 July 2013

Another thing which might be implicated in this disease is constipation which might result from anxiety levels, stress levels, having nothing to look forward to, and/or a diet which is lacking in fresh fruits and vegetables. The virus, if there is one, seems to like living in the digestive system, particularly one which is constipated. A relief of constipation seems to bring the virus to the fore, or to reactivate it, but afterwards I think the condition of the patient can improve. Stubborn constipation, which seems common, can also be relieved using caffeine based substances.

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Vitaliy said on 14 July 2013

Clearly there is a lot of frustration shown by the comments which is understandable with a debilitating condition like this. However, I do think that the NHS information above has been somewhat misinterpreted . In my view it is not saying that ME or chronic fatigue is originating from a psychological cause . Neither is it saying that CBT and other interventions will cure the condition. Rather that how people deal with and manage their condition can have an impact on it . One of the major problems for the medical profession is that ME is a collection of symptoms which vary from one person to another. The cause in one person may not be the same in another and it is very difficult to actually identify a cause and offer help and targeted treatment. Speaking as someone with chronic fatigue caused by adrenal insufficiency resulting from a brain tumour I am in the "fortunate" position of having a specific diagnosis and some medication that helps the fatigue and I can do quite a bit. . There is clearly a major need for substantial research into the chronic fatigue/ME syndrome to tease out what are the contributing elements of this debilitating condition..

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Krstee said on 12 July 2013

I have suffered from CFS for 18 years, and Initially for the first two years it was terrible. I lost my job, couldn't go out so lost contact with friends and at 22 yrs old it caused a bit of depression. This was actually quite lucky. My GP prescribed me Setraline Hydrochloride as a mild anti depressant and within a month I felt better and my CFS symptoms had eased. Don't get me wrong I still had pains in my legs and my concentration wasn't great but there was a marked improvement. After a few months of use I was having good days and on these good days I would go out on my bicycle, feel slightly worse the following day for it, but after a few days would be able to go out on the bike again.

Eventually I got to a point where I was having good days most days. I started to work again and I now have a wife and family. I can still have so-so days (I don't call them bad because compared to the past and to some other people's symptoms they aren't) and i have been taking the setraline on and off since 1995. Last year it got slightly worse again after a sickness bug, generally with the pains in the legs but also my concentration, my GP told me to double my dose of the Setraline which again after a couple of weeks eased the symptoms.

So to sum up, the Setraline worked for me, the exercise helped a lot and although I think I had it quite mild compared to many sufferers I am still affected by it after almost 20 years after the initial symptoms occurred.

Don't give up though it does in time get easier.

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cfsmenhs said on 07 July 2013

In addition to what I wrote in my previous comment, it is worth undergoing also a starch tolerance test with measuring insulin levels, too.

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cfsmenhs said on 06 July 2013

For many CFS/ME patients a problem with the digestive system is developed.

I recommend all CFS/ME patients to undergo the following lab tests:
- glucose tolereance test with measuring insulin levels, too
- hydrogen breath test for lactulose and lactose (to show if there is a problem with the intestines)
- food intolerance test (IgG)

If the tests show that there is a problem with your digestive system, your symptoms can be much eased by keeping a diet, by taking the necessary digestive enzymes as pills and perhaps by taking special antibiotics which take effect in the intestines.

The above mentioned tests can perhaps also prove that your health problem (CFS/ME) is not 'all in the head' as the results of the lab tests might indicate a physical problem with the digestive system.

Good luck and all the very best, guys!

Never give up the fight with this illness!

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TiredChris said on 05 July 2013

I've had ME/CFS/FMA for over 26 years and I've seen hundreds of GP's etc. Most wouldn't stick their necks out & give me a proper diagnosis fear fear of others 'laughing' or sneering at them.
The sad fact is that there arn't any hospital or NHS specialists who truly specialize in diagnosing this problem. :(
And even if there were any, the CFS/ME/FMA specialist would have nobody to refer patients like us, too for 'hands on' help & home support or even 'mentors' for us. :(
GP's have referred me to psyciatrists for 'help' but psyciatrists dont know even the first thing about ME/CFS/FMA; Or even How to spell it. :(
Psyciatrists have no training in CFS/ME/FMA so how can they help us ? It is a neurological complaint not an 'attitude problem'. :(
The sad truth is, that not enough (or even any) NHS Or Govt money is spent on researching it. :(
Mine feels very much like 'alzheimers' disease... I'm always forgetting to do things, (even on those rare occasions when I have the energy). Drat ! Drat !!
I live totally alone. My family either wont or can't help me. :( All I get is 9 hours per week 'home-help' from Social Services'. :( I could do with that per day. (At least) :(
I Keep moaning to politicans to Increase the miniscule ammount of money/help/research we receive, but I leave the results of those pleadings for to you to decide for yourselves.... :(
Surely we must keep on trying for Justice, not just 'lip service' from those who could do something Positive about it. :(
Live long - and keep complaining !!! I Know its a different matter - but how else did women get 'the vote' ???

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Snow Cat said on 27 June 2013

Re: CFS/ME
The condition seems to be caused or triggered by a virus.
A person may have initial flu-like symptoms, but unlike flu the person seems to have difficulty fully recovering from the virus;usually the recovery would be between a few days to a week or two weeks, but with CFS/ME the person seems unable to recover from the virus. This suggests a weak immune response (to the virus). I think a person with CFS/ME has what might be described as a common cold/flu to a greater or lesser extent all of the time.
Concentrating on improving immune health would therefore seem to be the way forward for a person with this condition. The candida diet and/or the coeliac diet I think might assist in addition to immune system health remedies. Very basically I think a person need to achieve optimal health levels to feel better/recover from the virus. Nutrition and diet advice should therefore be obtained. Complementary medicine may also assist.
Environmental health I think must also be considered, such as ensuring a person lives away from high energy power lines, pylons, masts, and such like, and perhaps to limit the amount of time a person might spend near a computer screen/TV screen, or such like, might also assist with this disease.
With regard to the condition being psychological, I think a person’s routine, or their day-to-day activities, and also all of their current circumstances must be considered by the person, as the disease seems to be made worse by routine, monotony, and boredom. I think it is important therefore that a person does more of what they want to do rather than what they have to do, or supposedly have to do, although I appreciate sometimes this can seem extremely difficult/impossible for more than one reason.

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Bizarre Silk said on 15 May 2013

I was diagnosed with CFS four years ago at the age of 36. Through determination and focus and now live a normal life but still take some precautions and preventive actions but stay positive.

The turning point for me was the militant attitude I saw around me from other CFS suffers who created a negative approach to treatments rather than embracing all possibilities of change and improvement. I decided I would keep trying different treatments until I found something that helped. The graded exercise regime was the starting point and this led to a wider social interaction and positive outcomes.

I know that not all treatments work for everybody but everyone could gain something from some of the recommended treatments. Having a supportive GP is important but not essential. There are others who can help. I found my local pharmacist very helpful and encouraging.

You have to fix your approach and look within to find the most suitable treatment, and this means accepting there is no instant fix or cure and evidence of effective treatments is not complete.

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Deedee88 said on 11 May 2013

I was first diagnosed with M.E in early 2006, before which I'd suffered 2 bouts of glandular fever in as many years. I managed to recover to good degree in 9-12 months and was back finishing my alevels, it took me longer than normal to recover from viruses ect but apart from that I was ok. I continued to improve and my immune system became stronger until Dec 2010 when I caught swine flu and once again developed M.E. I've been very lucky and have a very supportive G.P who's willing to try different medications, I'm currently on Amitriptyline ( an absolute life saver), gabapentin and tramadol which seems to be working for now. I've tried G.E.T and in my opinion it causes more harm than good and I wish they would look into other treatments than that and CBT and figure out what's causing it and fund more specialist M.E clinics ( theres only one in Wales that wont take you if your in a different county like me!), I've actually recently heard that the government is funding more research yay!! Also i wish there wasnt the stereotype regarding disablity benefits, i have to claim them to keep a roof over my head and inly did so over a year after my relapse began because my mother passed away and therefore i needed some form of income. Sorry for the essay but my point of writing this is I have been and still am severely affected by this but I'm proof that it can be beaten, you've just got to listen to your body and not rush yourself and try not to get frustrated with your limitations (easier said than done I know) but Know it can be beaten I have done it and don't give up hope!! It has helped me realise that I want to go into helping disabled charities fight the government, preferably an M.E one.

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Amberj92 said on 11 April 2013

I have just recently been diagnosed with M.E after 6yrs of symptoms which started after I was hospitalised with viral Meningitis. First of all I wasn't too bad but as time passed I was working myself into the ground (as I didn't know I had M.E back then) and after three years I couldn't work anymore and I completely crashed. I used to be a cabaret singer but I had to give it all up, not only do I not have the energy to work my memory isn't good enough to remember any lyrics. I've been reading and have really found it comforting that there are other people who understand what it's like! My symptoms include -: memory loss (short term), headaches, Brain fog (I struggle to find the words I need to use), severe tiredness, constant mental and physical exhaustion, pain in my neck, shoulders, back, hips, arms, hands, feet, legs, Balance, sensitivity to sound and light, depression and mood swings and I also have IBS now. I find it hard to do things like dry my hair because I can't hold my arms above my head. I struggle to walk because I also have hyper mobility In my legs so I often fall. I struggle to do the most simple task such as walk down the stairs or have a shower and where as I could have done a food shop and been home in an hour it now takes me 3hrs. It effects every single aspect of your life people hear the words chronic fatigue and assume you must be a bit tired sometimes! If only they knew! I'm exhausted just having written this! I wish everybody here a good day and hope your symptoms start to improve soon.

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Janan said on 25 January 2013

The outlook for ME/CFS as described on this site is misleading. It is not true that "many" people return to normal activities - the estimated number of people that recover is less than 5%. Many of these are children, who appear to have a better chance of recovery than adults. What the site also fails to point out is that for many people this is a progressive disease that gradually worsens year on year. For these patients the outlook is fairly bleak - increasing levels of disability leading to total dependence upon carers. We have no information regarding the number of people who die from ME/CFS, since death certificates only usually record the immeditate reason - i.e. heart failure for example and do not state the underlying cause.

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joshy1105 said on 28 December 2012

Tiredness bothers other people more than it bothers me. My brain function is my worst culprit. I slur my words sound drunk so even though im tee total people look at me strange. Rage is also a problem for no reason i just launch into utter rage calm down five minutes later back to normal. I dont suffer from depression yes im in a riddiculous situation but my brain makes me feel unnaturally happy. I cant be bothered with stress i just automatically turn off. Which isnt good either, I see things closer to me than they are hence i drop a lot of things cos i miss the tables and kitchen work tops. or they are further away so i bump into them get a strange feeling like a dull orgasm in my head which actually turns out to be a sensitivity to sound and vision so if i look to my left whoosh if a dog barks whoosh pretty anoying actually makes you feel continually dizzy as well as being dizzy cant report a repair cos cant remember why im on phone or describe things no words my skin burns my hands and feet on fire. Control when im asleep?? people are nuts remove my sleep and i would freak. I have weeks where i may get an hour or two utterly exhausted if someone messes with my sleeping pattern miss going into the city center for shopping or even a day out confined to the house painful getting up and down stairs joints pop out and back cant keep my hands above my head to dry my hair. My friends got freaked out and vanished just me and my kids now. I need help from social services i think just discovered i am severe form lol but u battle on really interested in anyone in uk managed to understand adhd and ritalin research or who can get it for their ME. back pain means i have days i cant get out of bed. i was happy when i got this bad. I had great boyfriend had just got into uni after doing law so afraind stress etc and depression isnt a factor for me and never had a runny nose in my life we just put it down to a bug we caught but maybe its not. Mine started mild way back as child

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joshy1105 said on 28 December 2012

If i trace back illness in my life when i was 10 yrs old i was admitted to hospital for joint pain which made me collapse as a child running. The many appointments to rheumatology resulted in my parents being told i would probably suffer with rheumatoid arthritis as i got older i had a low but positive ana that couldnt be explained. Nothing bothered me much till i hit thirteen or fourteen massive unexplained weightloss (spent dinner money on cigs never ate breakfast and got a sandwich or bowl of cereal for tea) I had massive pain in my hips and thighs which was put down to growing pains tiredness and massive water retention and what i now know to be gallstone/liver pain and losing toe nails and finger nails like jelly. I had three kids and dropped em off at school after sleeping frommidnight till 8am come home back in bed by nine till 3pm thought it was normal. Then i got worse coulnt walk extreme pain just went downhill told was depressed given anti deppressants when i explained they didnt work my dose was raised several times. Then one day i was just cold my kids shoved me in a taxi i didnt feel any different just cold. I was told i was taccicardic swollen spleen failing liver jaundiced septic shock peeing blood. blood pressure was 73. I almost died. I wouldnt have gone to hospital i wanted to sleep. a few more hours and i would have been gone apparently it was a stone in my gallbladder caused a massive infection was told feel normal once removed but never did hence cfs me diagnosis. I think it says a lot the fact i was so ill i was dying and the only difference i felt was cold. All the symptoms were the same my brain didnt work muscle pain etc. I now get all the refferals i want to but whats the point cos when you get there no one knows what to do. I have acid reflux difficulty swallowing not digesting food then vomiting it back after hours and diarhea nausea and ibs(apparently which ive never been tested for!) i have appointment in jan for bowell specialis

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sapphire121 said on 15 November 2012

i'm 17 years old and from the age 11 i have suffered from this illness, i've never had much of a life because of it. i was a Very severe case too set of with i was in a wheel chair ever got out of bed or opened the curtins because i couldn't stand the light and when it came to friends i wuoldn't allow anyone too vist because of how bad i was, this will make everyone laugh but what helped me through my hard times was my staffie dog molly. when i started to feel better i just couldn't mix with anyone it took alot because people would stare at my walking sticks and how pale and and ill I looked. But i'd like everyone too know im a mild case now after 6 years of being Very severe, yeah it comes back and knocks me down but my boyfriend alex picks me back up i wont let it get me down now. i still suffer from all the symptons you name and i can tell you everything about them i can't tell you how much i have research about CFS, i've even wrote about my hard time with it and all my friend and family have read it my best friend was crying from it because i got bullied when going through my hard time with m.e and added that too my book. but as i said i just kepted hoping for the best !!. just take it easy rest and pace your self don't go at everyone else speed go at your own speed !! thats my advice and i'am finally working and trainning to because a Dental Nurse now :D just remember the things people tell you.
.pace yourself
.routine
.rest well
.don't go bed when and get up whenever set your self a time on going too bed and getting up
.Don't push any away take the help and support because it does help you alot.

Good luck one day there will be a cure for this !! and know will have too suffer ! i have to say i wouldn't wish CFS upon anyone because i've been through hell and back.

hope this has helped, i hope you all feel better like i do now :)

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josephine3 said on 25 October 2012

like so many of you who have written i too suffer this very misconstrued illness , i was diagnosed 4 years ago , and along with porphyria , severe osteo-arthritis from the age of 37 as i have it all through my spint and my neck vertebrae are dused , i am exhausted all the time and i do mean that , some days i can just make it from my bed to the bathroom , i also suffer neurological problems in my brain and nerve damage in my legs , asthma and stage 3 kidney disease , i have very luckily a very good GP who really knows how i struggle , i am unable to work and hate being on disability benefits but what else can i do , so many people think oh your being just a bit over tired , - i wish , many days i sit and cry as life is so very miserable and i have sat with tablets in a moment of madness to think would it be better not to be here anymore , i cannot interact with my grandchildren , i am only 52 and holding my daughters 6 month old baby after 15 mins i have to give her back , i would just like to feel slightly llike there is something worth living for, i know many people have far worse problems than i do , but if anyone has any helpful tips i would appreciate them , sadly i have no friends and rarely ever go out , do others feel as down as i do ,

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User5775 said on 16 October 2012

I had never heard of this hideous disease untill O collapsed after a flu vaccine (year 1993...bejing flu). My problem started after the vac, not feeling well. Within a couple of days my back and legs were on fire. A few days after that collapsed, and from then on I have been very ill.

My then GP realised I had suffered a reaction to the vaccine, and within a few months I was diagnosed with ME. I will not call this hideous illness "cfs" as this undermines the whole illness.

I do not know how much Drs and Nurses are taught Of ME during their training. Very little I feel, as my past stay in hospital with a fracture showed me they knew nothing.

As someone said, if Caner, MS and HIV patients were treated with the disbelief and distain that we are given there would be an outcry. The whole thing is disgraceful.

After 19 years old, I remain very ill, feeling like deaths door, and in so much pain. I've tried pills and potions, and understand I will probably never recover or feel well again. Hopefully one day treatments will be found.

My treatments for me now are symptomatic relief and thankfully a good GP who doesn't knock me for feeling ill.

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mamacaz said on 01 October 2012

Sunshine Sue,
I have to ask why are you resigning? if you are unable to work due to serious illness then you and your employers should surely discuss this with Occupational Health as maybe you could consider early retirement on the grounds of ill health on either tier 1 teir 2 or tier 3. I am 56 and have just gone through the process I am now permanently retired (tier 1) and draw now enhanced pensions.

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Lilabelle said on 26 September 2012

I am 28 years old and for many years, since being a teenager,have been to the dr with many different ailments. At the time I believed they were all separate issues until I have very recently read about ME symptoms. These are things I suffer with-

*Extreme tiredness even after a leisurely trip to the shops- I feel the need to rest.
*Bright lights particularly flourescent make me feel exhausted
* gastro problems including feeling sick for which my gp diagnosed IBS
* sound sensitivity, I hate the tv being loud and listening to the sound of others eat makes me crazy
*nasal allergies inc dust, animals, hay fever
* prone to bouts of sinusitis, throat infections
* fuzzy feeling in my head/ears = lack of concentration
* muscle spasms in legs like they are 'bubbling'
* easily bruise/unexplained bruises
* leg pain in winter
*neck/ top of back pain therefore feeling the need to lean over on my desk, table to relieve the sensation
*headaches
*heart skipping a beat
*struggle sleeping
*irritability/mood swings
* struggle with physical exercise - lack of stamina and strength
* increased symptoms/exhaustion if my environment changes I.e. hot weather/ staying at my in laws.
* struggle to get comfy at night unless I have my special pillow that I have had for years.
*inability to do press up/lift own body weight and find sit ups very painful in my neck/back
*frequent urination regardless of levels of fluid intake

It's rare I experience all symptoms at once, they comes in bouts which leaves family and friends thinking I'm a hypocondriact and now I am reluctant to go to my gp as they do test for individual symptoms to no avail. I have had various blood tests, brain scans, ECG confirming irregular heart beat that 'is not a concern', endoscopy of the bowl/biopsy but the only diagnosis I've had is IBS.

I would really appreciate comments from sufferes about my symptoms and the best way to go about approaching my gp.

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Sunshine sue said on 14 September 2012

Hi I wonder if anyone from the NHS who decides on treatment protocols for ME ever reads these comments because if they did, they should hold their head in shame. I have been sick for 2 years withME. I used to hold down a well paid job that I loved, travel extensively, Go to the gym 3 times a week. I used to pride myself that my motto was " nothing was impossible" since becoming Ill in 2010 it has robbed me of everything I loved in life, my love of outdoor activities which I can no longer do as I am bed bound, my partner has left as he was unable to withstand the restrictions the illness placed on our lives. I am about to resign from work as I can no longer work. At the moment I cannot even wash or care for myself. And what support do we get from he NHS ........ The offer of CBT which is poorly delivered, (one session in 6 weeks!) and not much else. ME sufferers are abused, downtrodden and forgotten, buried under the umbrella of psychosocial diseases. I keep a diary as a form of therapy and I recently wrote in it that developing ME was like being buried alive. You just lay in bed and watch your life disappear. To date I have spent £13000 of my savings in an effort to recover and I'm still no better. I read stories of recovery in the vein hope that one day it will be me.

If they treated sufferers of other diseases such as cancer, MS or aids as they do us, there would be a public outcry.
Where is our voice? Where are our rights to even basic care? If I ever recover I have vowed to use whatever energy I have, to promote the plight of ME sufferers who need a higher public profile before attitudes change.

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potsy123 said on 09 September 2012

Hi, I was misdiagnosed with cfs 2 years ago. I get the impression that the doctors say you have cfs if they can’t find out what illness you really have, so it’s up to the patient to find out for him/herself. I have Postural Orthostatic Tachycardia Syndrome (POTS) which has similar symptoms. Please look this up if you are unsure about your diagnosis, and insist on having a tilt test if your symptoms fit; (low blood pressure, feeling faint upon standing for long, blood pooling in the feet, nausea, extreme fatigue , and many more symptoms…). It took a lot of arguing on my part to have the tilt test, and lots of people with POTS are misdiagnosed with CFS. Good luck!

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hodski said on 18 August 2012

Having suffered with this condition for 14 years I have tried almost everything on offer - I refuse to sit naked in a tent in my living room chanting , which was one suggestion I found on the internet - all having some effect for a short period time before the dreaded demon returned with avengence. Simply, there are peaks and troughs which no treatment, whether it be pills, therapy or diet, has a lasting effect. Those afflicted live a wretched half life, difficult for others to understand and for us to cope with. It wasn't until I accepted that I would never be rid of CFS that I became able to manage it. Positivity is one thing, kidding yourself is damaging.

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Married to a Sufferer said on 08 August 2012

It is appalling that after all these years the NHS and NICE is still pedalling this ignorant, ill informed and counter productive drivell about CFS. You make it sound like catching a bad cold but dont worry most people will get over it and if it does not we will send you to a shrink who will explain that it is all in your mind. This is the 21st century not the middle ages for goodness sake.

It is a complex condition which has probably more than one cause and is part of the "family" of auto-immune diseases. Sufferers have no hope with the NHS they have to seek help elsewhere. Those that do not suffer and their lives are ruined. Even those that do perservere with alternative remedies have a hard slog and it can still take years. One day the truth will come out and the health service will have to eat humble pie. I hope that is not long in coming and I hope it chokes them!

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Suella said on 16 July 2012

The best on-line help I have found for my ME is at the not-for-profit site run by Bruce Campbell. www.cfidsselfhelp.org He is a self-help specialist working with Dr. Charles Lapp who runs a CFS clinic in the USA

The site holds many useful articles, and advice by a Self-help specialist who has had chronic fatigue himself and has been cured for at least 10 years. There is a sister site that actually walks you through understanding your symptoms all the useful management techniques that Bruce Campbell uses. He has had thousands of students through his courses since 2000 or so.
http://treatcfsfm.org/

For me, my symptoms have been very much ameliorated by the practices that I have learned in the above course.I've gone from nearly housebound to back at college part time as a very mature student.

I have learned how I can exert a great deal of control over my symptoms through my life style and pacing. There is also really sound information on using a cheap pulse monitor to determine what the safest level is to begin at if considering GET.

I'd be interested to hear how others feel about the site, and if they find it helpful. I find that it gives me the on-going support that is impossible for the NHS to provide..

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Nighteyes said on 16 July 2012

Everyone who comes to this page must consider Lyme Disease as a diagnosis for their illness.

The long long list of possible symptoms includes:
•flu-like systems
•palpitations
•muscle pain
•joint pain
•headache
•fever or chills
•neck stiffness
•extreme tiredness & fatigue
•numbness and pain in your limbs
•temporary paralysis of your facial muscles
•long-lasting (chronic) joint pain and swelling
•pins and needles
•impaired memory
•depression
•difficulty concentrating
•neurological pain

etc etc etc

Many Lyme patients are initially, incorrectly diagnosed with other illnesses such as arthritis, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, lupus, early ALS [amyotrophic lateral sclerosis], irritable bowel syndrome and various other more nondescript illnesses....the list goes on.

Being misdiagnosed with another syndrome when the culprit is actually Lyme disease usually has devastating results! What could have been an easily cured infection in the early stages turns into a chronic life-long disease that requires years to treat.

Lyme disease is becoming a misdiagnosed /underdiagnosed epidemic!
So please please please become Lyme-aware now!

http://www.underourskin.com/background

http://www.lymediseaseaction.org.uk/about-lyme/faq/

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Laneypem said on 04 June 2012

Hello everyone I suffered a virus some 10 years ago. The virus became more and more aggressive over the years. The diagnosis by all the doctors I sought help from was always the same. They all diagnosed a viral infection. I had every test known to man. No bacteria was present in my bloods nothing abnormal in brain scans, kidney scans, or any other scan and yet I was becoming more sick as time went by. I once wet to the loo and my urine looked more like a blood sample. Yet tests revealed nothing out of the ordinary. There was no explanation ever offered to me. I have been called a malingerer and hypochondriac by people within the medical profession. It is strange because my older brother was diagnosed with ME and died of a brain tumour. My sister also developed the same symptoms as me. We had been to a donkey sanctuary and both been bitten.. My youngest sister also developed ME after beeing diagnosed with glandular fever. Both my middle sister and myself were both diagnosed with ME/CFS after we sought help privately. We were advised that blood tests carried out had shown the presence of borrelia bacteria. My sister had specialists blood tests done privately and she had a lot of problems due to the borrelia in her blood. After two years of treatment she recovered enough to return to work. However I went downhill and have become worse. I am interested in all your comments and advice and will try to resolve my own recovery and the medical profession can offer me no help. Your comments have given me food for thought thank you all. Good luck.

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TriggersBroom said on 03 April 2012

In the Outlook section of this article, it is correct to state that for many people symptoms improve over time; any psychological assistance is welcome in helping us beat this ridiculously hidden and misunderstood (set of) illnesses.

However, in the same section, asserting that many people also make a full recovery is a frankly irresponsible thing to publish. Where is the evidence to back up this statement? My suspicion is that it doesn't exist.

As mentioned by many others in response to the article, those of us whom have lived with CFS never fully recover: we learn to cope, to adapt to the daily problems and life-long limitations of this debilitating, often frightening and very real illness.

Please consider removing the statement and including more statistical information as available on relative recovery rates.

For me, pacing was the single most useful aid to partial recovery and getting some of my life back.

Those who state that the syndrome is psychological in origin generalise beyond comprehension, and are blatantly avoiding the many sufferers who know for certain due to their bodily reactions that there is an underlying physical problem - either through nervous system damage from a viral infection or suchlike.

Kindly continue to publicise the syndrome as a real illness and, unlike the many GP's in England that I visited in vain, continue to believe in it.

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lorraine j said on 28 March 2012

ns130 there is a team in golbourne lancs they use to be in leigh lancs recently moved the specialist in this my son at 22 has got it hope you can find more about it

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riverlady said on 26 March 2012

I think overall this is a decent [though simplistic ]definition of the illness. I must say though. I do not agree with the statement I see over and over about people fully recovering, I have talked to alot of people with m.e. and it is simply not true. Some of us are fortunate to regain back some of our health/lossses , but even more likely is we adjust and adapt our lifestyles [everything we do ] pretty much around the illness, at least thats my story and the story I hear from others with this, theres no miraculously cured, all better people with m.e.,..well, i haven't talked to them. I do believe if the illness is caught early on, or it is a child perhaps [or an athlete maybe?] they can get to be around 80% [which would definately feel like a cure, but in reality if you compared before and afters its a greatly improved, not a "cure/complete recover" This stateement just really irks me, i think its used because so many people are misdiagnosed and actually had something else, not m.e. I know personally as a sufferer myself [6 yrs walking "the green mile" ] that it makes me feel bad abt myself, but theres no toughing it out w/ this disease without the disease kicking you down, you walk on eggshells to minimize symptoms and avoid crashes/flares...I wish you guys would consider removing that statement as its not accurate and not at all statistically sound. other than that pretty good-

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NSI30 said on 12 March 2012

I have found reading through everyone's comments really useful after recently being diagnosed with CFS by my consultant Endocrinologist, who I was seeing for Thyroid care. I am very keen for my GP to refer me to a private specialist for CFS treatment and care, does anyone know any specialists or where I could find this information?

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NSI30 said on 12 March 2012

I have found it really useful to read through everyone's comments on this page after recently being diagnosed with CFS. I am very keen to be referred by my GP to a private specialist for treatment and care, perhaps for CBT and a GEP. Does anyone know of any CFS specialists, or where I could find a list of recommended specialists?

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hope85 said on 12 February 2012

I am a 26 year old male, a student of medicine from Serbia. Three years ago after a common flu as it seemed the flulike symptoms just never went away. A constant headache (brain fog-poor memory and concentration), chronic fatigue (unrefreshing sleep or rest), dry skin and mucous membranes, swallen lymph nodes in neck, stiff shoulders and neck, insomnia, constipation,decreased libido etc. My parents, friends, many doctors here in Serbia, they all made fun of me and said I was making it up because I am studying too hard. I did all the possible tests I could do and everything more or less was fine! I was also sent to a psychiatrists and treated with antidepressives for depresion but that did not help. Finally I came on this website and read that most of you went through the same story, and from what I have read on this page three things seem interesting: The Perrin technique, Infection with Borellia, and Dr. Myhill. I first went to Dr. Myhill's website, downloaded her book and started her program with sleep, diet, nutritional supplements, and pacing. (download the book it's free!!) At the begining I did not feel any better but after one month of following her regime and taking the supplements (most important are D-Ribose, Acetyl-L Carnitine, CoQ10, Magnesium Sulphate and Vitamin B12 by injection) my headache that lasted constantly for three years is gone! I feel much better at rest, but as soon as I do something physically demanding I crash. Her theory that the problem is in the mitochondria makes good sense and because you guys live in the UK you should definately perform the Mitochonrdial Funcion Test she recomends for determining the level of energy that you have (read her book!) I will also test myself for Borellia because that also makes sense to me and the Perrin technique should be tried because if nothing it at least rids you of all those toxins that are pilled up. Also I found 100% Tropical Noni Juice very helpful for constipation. Attack this, don't give up!

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pjrg said on 12 February 2012

I agree that the Perrin Technique helps but I needed something more and acupuncture has worked wonders for me. Using what I found out about my body with the Perrin Technique I was able to tell my acupuncturist about the build up of fluid in the lumps and bumps under my arms etc and by using certain points related to what they call phlemgh it has cleared my blocked up sinuses and I can feel the drainage of fluid out of my sinuses. but it went deeper then that. my Stompach and Spleen channels were the main culprits but a good Chinese medicine acupuncturist will look at you individually and feel your pulse and look at your tounge to see what your body is going through. Also you need to listen to your body and relay that information on. It takes a long time and you need to stick with it. Start with weekly treatments to get your body used to it but I found that the more frequent - i do 4 a week - helps so much more but in general at least a year of treatments. But once again everyone is different but it is worth trying things to find what works for you. I now have a part-time job and am functioning again!

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mboy83 said on 18 January 2012

Hi all, i took ill in oct 2009 when i was 26. i took flu, which at the time was suspected swine flu.

i got over this after 15 days, returned to work, lasted three days then was struck down with the symptoms you all discribe, was off work 2 months.

i am male 6ft 1", i was alwas thin but my weight plumeted to 8st, was in bed for 3+ weeks solid, graduly i moved more and...

I returned in new yr then again after a few weeks my sysroms returned. though i was going mad, eventually in summer 2010 after many tests and many days off work, i was diagnosed with post viral fatigue, the general nhs consensus was it would get better, it did not. it was then classed as cfs/me.

I have tried graded excercise, cbt cognative behavoural theropy, paid to go private as hns has me waiting 14 months. these seem to have helped as at the end of 2011 i had a few good months that i was almost normal. sadly it has returned, i am back of work. and fed up with this.
I intitialy did as advised and rested, when i had been off work for 7 months, i then went against advice and foced through it as it was costing me a fortune in lost wages and i cant aford to loose my job, but there is a limit to this. Before the pain and fatigue becomes two much and i have to relent and take time off.

i have tried everything the nhs has advised and a few other suggestions, they help to a extent but its the fact that it never goes away, it mearly reduces in sevarity that gets me down.

i am going to try the dr ribose supplement and then some of your other suggestions.

i find that it helps to get your worries of your chest, so appologies for the long story.

Good luck to you all, getting the recognition you deserve, having somone understand, and finding a balance that works for you, Hopefully some day there will be a definitive answer.

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ab73 said on 22 December 2011

Harpo - I think you've got the wrong name, try seraching for D Ribose.

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apfe said on 12 December 2011

I ‘ve had ME for 17 years. 2 years ago I discovered the Perrin Technique, an osteopathic treatment for ME. It suggests a cause. As far as I understand it the technique is based on the theory ME results when something like a virus causes a fault in the lymphatic system, which is regulated by the sympathetic system and should remove waste toxins produced by every tissue in the body.
I describe the feeling of ME as the pain you get after a very long, hard walk. The lactic acid makes your muscles hurt and shake, and your body is at the point of collapse. Add to this the sensation of a severe hangover. Being poisoned by a long term build up of toxins seems a very likely reason for why my muscles feel leaden and my brain doesn’t work properly.
The treatment can take more than two years and is initially intensive. The lymphatic build-up is drawn out of the muscles and into the defective drainage system where the pressure forces the waste to be discharged. Gradually treatments become more spaced out as the practitioner tries to get the system working on its own again. The gap between my treatments is now at least 3 months. I also do simple breathing and stretching exercises at home, and every night knead my torso upwards and my neck downwards, while my husband does the same for my back.
The treatment is likely to make you swell up and feel a lot worse to start with. However, after 8 months I had more energy than before. Now, after 2 years, I have enough energy to go to concerts in the evenings and do some socialising, as well as my part time job. It is not a cure but it has given back my long lost zest for life. I just now have to get over the bitterness that I wouldn’t have lost the whole of my 20s if someone had told me about this treatment .
The treatment is working for me. Go to the website, look into the treatment and make up your own mind about whether it seems worth it, at least you’ll have had the choice. The website lists practitioners throughout the UK.

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garch2010 said on 30 November 2011

Familiar story. Was originally diagnosed with depression. Then clearly my GP thought I was a malingerer. Then a diagnosis of CFS. And finally Narcolepsy with Cataplexy. Hurrah!

Well I say diagnosed. Only after I spent some thousands of pounds on private testing did my GP even consider a neurological origin for my maladies. So my GP was correct all along, it was in my head - literally it was - my immune system was taking pot shots at brain neurons and rather succesfully killing quite a few.

Guess what. Blood tests normal. Urine tests normal. MRI scan normal. Heart dignostics normal. Point is that the standard battery of GP ordered tests will not identify the vast majority of neurological autoimmune diseases.

Don't give up. It can be a hard fight to get the correct diagnosis.

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Harpo said on 17 November 2011

Hi, I have Fibro. It's really hard living from day to day. People & Dr's don't understand how much pain we go through. It's really hard to get the benefits we're entitled to. I have had this condition for 3 years and it affects me and my wife & kids. Being honest i am sick of being like this on a 24hr basis. I have worked all my life, when you try and get help they treat you like your some kind of scrounger & think your at it. Then you have to fill in pages & pages of claim forms. It's like the benefits agency try to catch you out, thinking you are some kind of fraud. I hope everyone else in these comments keeps as well as possible. My heart goes out to you all. Good luck in your search for some cure or relief.
Could the person who wrote about the D-Ribband supplement post what internet site they get it off please, i am willing to give anything a try to get some of my life back. Thanks

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User615317 said on 12 November 2011

There are a couple thousand viruses with names and another 20%+ still unidentified. It’s the job of the immune system to eliminate or contain them. Viruses infiltrate and use cell structure to multiply. Weakened immune function can allow viruses to become a chronic problem. An immune system can become overwhelmed and further weakened.

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User615317 said on 12 November 2011

NHS doctors please wake up and find out what the disease really is ! you just havent found it yet but im sure in years to come they will find out more about this terrible illness and it will have a name and possibly a cure as well . Please stop trying to say this illness is " all in the head or depression " you will be proved wrong one day and your expertise will have failed and you will feel stupid . The problems you make for your patients in telling them its depression etc leads to more problems as the illness is not one of depression or one someone can control through emotions etc . It is a reall painful under reasearched disease one that is totally debilating and ruins ones life . There are millions suffering from this ! they cant be all mad !

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Sicktodeath said on 11 November 2011

I have had CFS/ME for over 16yrs! I was finally diagnosed last week, although I have known I have had it for at least 10yrs. I got it after getting gladular fever, the Dr should have insisted I rest aftwards but he did not so I didnt so I ended up with this horrible illness. I have lost jobs over it and it has all but destroyed my life. Rest does not work and the bit I hate most is that I constantly catch viruses; I have had 2 cold this month alone! Increase in weight & bad skin, loss of energy and son on. To date I have had no help from any of the GPs I have visited, until now and that was because I threatened to sue for negligence! I have been told that the treatment will be excercise and diet... I rolled my eyes...that old chesnut! There are other treatments but the NHS will not fund them!
I do not expect to ever get better, although vitimin suppliments have helped and I find that stress and unhappiness is the biggest trigger for this desease. If the NHS told their Drs to insist that glandular fever sufferes rest for at least 6 wks,thousands of people would not suffer from this horrible illness and if they diagnosed it early (rather than ignore it), more people would recover as the longer it is left untreated,the less likely you will be to ever recover.... I am angry and very bitter about this illness and the way I have been treated... I hope you all fair better than I :0(

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RobinHood70 said on 08 October 2011

It is deeply offensive, to say the least, that the term CFS is presented as doctors having "facts", but the term CFS is presented as patients "feeling". Given that patients are the ones experiencing symptoms, it should be obvious that they're the ones who are being objective; doctors are working strictly on second-hand information given BY the patients! Personally, I have no objections to the term CFS and use it most of the time, however to relegate my experience to what I "feel" and subliminally give more weight to doctors' preference is really biasing.

While the symptoms of many people change, and sometimes even improve, over time, I would question the statement that many people make a full recovery. I know of only one person who claims to have fit the Canadian criteria or International criteria (self-diagnosed, mind you) and also claims to have made a full recovery...and he admits quite openly that he was suffering burnout and believes that CFS is a variant of the same condition. I would like to know what criteria the studies that led to this article were using because almost nobody using CCC or ICC makes a full recovery at any point!

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User600117 said on 29 September 2011

I have had Chronic Fatigue and Fibromyalgia for 6 years. Not here to list what Ive been through as Im sure its similar to everyone else's experience...but to share some things that have moved me towards recovery, significantly:
1) A book and whole recovery protocol "From fatigued to fantastic" by Dr Jacob Teitelbaum which talks you through supplementation, diet, everything you need to consider (and also sheds a huge amount of light on why/how you got like this in the first place - it is a total revelation to read (and Ive read all the books I can get my hands on)! I am following the protocol and having significant results.
3) D-Riband - a supplement (type of sugar used specifically by muscles) that is readily available (highly recommended in the book, can bring about almost 50% improvement in symptoms) no side effects and gives me a massive boost when I take a spoonful 3 x a day, wish Id known about it years ago!
3) NLP treatment (the sub-conscious mind plays such a huge part in all this, its so important to tackle) - and in particular, EFT treatment (easy to Google - sounds odd and you may think ineffective as I did but it really works). I had two amazing sessions that moved my recovery on in leaps and am now teaching it to myself from the book "Self help treatment for CFS/ME using EFT tapping" by Kelly Meisak. I had a massive pain episode last night following by the usual leaden exhaustion this morning and have just managed to shift the pain and lift my energy significantly using the techniques taught in the book so whatever your thoughts (and I was a total cynic to start) its really worth a try, what's to lose?

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lbw said on 17 September 2011

Taken over 3 years to get verbal diagnosis though not sure its in my medical records (fibromyalgia/CFS) . I work full time in a Special Needs School and am under OH. I have had to give up a lot of the physical work in school and do mostly the academic work.I find that the tiredness is getting worse and 2nd week into new term really struggling- . I have done physio, hydrotherapy ( which exhausted me) and a course on pain management ( managed 3 out 6 classes- again exhausted). Everyone say its temporary ( first dr 2 years ago says a few months).. All have recommended reducing work days/hours ( Id be really stressed with the financial difficulties we would face). I am lucky that I am mobile (though days when feet are painful make it difficult) and in work. I wondered if anyone else out there is in same situation and how they are coping.

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Manna said on 27 August 2011

I have been using ADRENAL CELL EXTRACTS for the last 18 months, that has nearly completely cured me of ME/CFS. Now the doctor's are telling me that I shouldn't use this natural form of cortisol, as it is not a regulated or registered form of medication. I am trying to cut down on my dose, but my symptoms of severe fatigue just come right back. When I am on the right dose, my life continues as normal, but I don't want to be hooked on them for life. Has anyone any experience of taking taking these pills (either porcine or bovine natural glandulars?)

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Janan said on 26 August 2011

One of the objections which many patients have, regarding the name by which this disease is known, is that Chronic Fatigue Syndrome has become an umbrella term for anyone suffering from lasting fatigue of unknown cause. Myalgic Encephalomyelitis ( M.E.) on the other hand, is a distinct disease with neurological and immunological symptoms, in addition to overwhelming fatigue. Dr Charles Shepherd of the M.E. Association recently made a relevant comparison. He said that diagnosing all patients experiencing unexplained lasting fatigue, with CFS, was the same as taking every patient suffering from pain in the head and diagnosing them with “Chronic Headache Syndrome” when they may have a simple tension headache, migraine, or a brain tumour...
The only treatments available on the NHS are based on a combination of talking and exercise therapies, devised by psychiatrists. These are known as CBT (Cognitive Behavioural Therapy) and GET (Graded Exercise Therapy). Whilst this approach may be helpful for patients experiencing fatigue as a result of suffering from a depressive disorder, they are of no benefit to patients with ME. In fact, there is evidence that some patients can be made considerably worse by undergoing this treatment.

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Ted99 said on 23 August 2011

To say:-"There is also little evidence of brain and spinal cord inflammation, as the term "ME" suggests."
is like saying the world is flat.

It is simply not true.

There is overwhelming evidence that there is brain and spinal cord inflammation - in the physical condition ME (but not of course in CFS, which by definition is not ME).

See-:

http://www.hfme.org/

for full details of the research that has taken place on ME ( as opposed to CFS)

See, for example, work done by Malcolm Hooper (Prof. Emeritus of Medical Chemistry, Sunderland).

It is time for everyone discussing ME to define their terms. Are you talking about an incurable physical condition affecting the brain (ME) or not?

Sadly, I fear you are just talking about CFS because that is all the NHS currently treats. In others words the NHS has psychiatric treatment for CFS - but no physical treatment for ME.

Merging the two names together as in CFS/ME etc does not solve the problem. It just adds to the confusion.

I repeat, there is currently no physical treatment for ME available on the NHS.

Please check the sources mentioned for overwhelming evidence of a physical basis for ME.

Thank you for reading this and would everyone in this discussion - please - define your terms!

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Crazza said on 16 June 2011


Please see Dr Sarah Myhill's website for a very different view of CFS, and hope at least for some for sufferers.

drmyhill.co.uk


Best of luck to you all
Crazza

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Alexej said on 04 June 2011

Hi ! My name is Alexis I am male and have 26 years, never smoke or drink, all my life I been living on healthy way, eat health food and practice a lot and my muscles were very strong..
But one year ago I have been diagnosed with Epstein bar or Mono, I have very high level of IGg antibody's in blood test.
Have complications and didn't feel my arms legs in space also my balance was poor and every time I closed my eyes I felt dizzy. After many months of terrible sick feel I feel better but now I have a periods when I experience big fatigue, head pain every time on different places,but on a moments and last for 5 min to sometimes one or two hour, or in moments that lasts for seconds.. My glands close to ears are swollen and I have muscle weakness and hypotonia like I am old grandmother. I feel so nervous because once I have normal life and now I am sudden limited of any hard activity like running or even fast walking.Made many tests MRI, EEG, blood for Creatine Kinase and rest but everything is ok. Next week I need to go on muscle and nerve velocity and I hope it will be ok too. But I am shore this is the worst thing I have in my entire life ! I think I have CFS, but I will really appreciate if someone tells me his opinion because I have weakness sometimes bad and sometimes I feel (almost) normal on a periods of time...I have strength in my arms and legs,but I fast go tired and need to rest. My heart is health,I do many tests and everything is ok, but when I do something a little more hard I feel slow beats and sometimes irregular.

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whica said on 17 May 2011

I have been suffering with CFS for many years but did not know I had got it. I was a shift worker and was always tired. Struggled to get through 12 hr days and nights.
I was diagnosed around 4 years ago and then I worked part time days.I just about managed this but I took Ill health retirement in January 2011 aged 57.
Managing the illness is not easy. In the last 12 months I have had only about 5 days where I have felt sort of OK.
Make no odds if on holiday or at home I still feel rubbish.
In the last few months the fuzzy head aches have got worse and the tinnitus is driving me mad. ( I can get some relief taking Co-Codamol)The more fatigued I get the tinnitus gets worse. Any sort of physical work is difficult. When I do this I suffer greatly.
I have to go to bed every day around 1PM to cope. When I miss out on this I will regret it for days after.
So coping with what I call the mental side of CFS head aches and consentration and the Physical side ....aches and pains together is not easy and is debilitating.

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whica said on 17 May 2011

I have been suffering with CFS for many years but did not know I had got it. I was a shift worker and was always tired. Struggled to get through 12 hr days and nights. It was a nightmare.
I was diagnosed around 4 years ago and then I worked part time days.I just about managed this but I took Ill health retirement in January 2011 aged 57.
Managing the illness is not easy. In the last 12 months I have had only about 5 days where I have felt sort of OK.
Make no odds if on holiday or at home I still feel rubbish.
In the last few months the fuzzy head aches have got worse and the tinnitus is driving me mad. ( I can get some relief taking Co-Codamol)The more fatigued I get the tinnitus gets worse. Any sort of physical work is difficult. When I do this I suffer greatly.
I have to go to bed every day around 1PM to cope. When I miss out on this I will regret it for days after.
So coping with what I call the mental side of CFS head aches and consentration and the Physical side ....aches and pains together is not easy and is debilitating.

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emjrich said on 21 April 2011

Try acupuncture and chinese medicine.

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zeenic28 said on 15 April 2011

Hi not sure how to start this so ill just go ahead. I feel like for the last 10 years or so ive been ignored by doctors and family. It was originally showing I had symptoms of glandular fever when I was about 20, but I was given antidepressants and beta blockers by doctors who declared me depressed. I have recently started seeming to pick up every virus under the sun and in the last month or so feel truly terrible. All my joints ache, I have the most horrendous throat and ear pain having trouble to swallow. My skin feels horrible and sensitive and Im having trouble sleeping again, have started losing weight and have no appetite whatsoever. The strange thing is that I also seem to have developed a real intolerance to any alcohol and at first thought i was allergic to it! I went to the doctor who said it must be an infection or tonsilitus/sinus infection due to the continuing headaches and pain etc but the antibiotics have not really done a thing. I feel like such a time waster and I know im annoying other people always being ill but im really getting down about it now as I have no clue as to why i keep feeling like I have flu all the time.

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P7 said on 24 March 2011

cjbears79, I had the exact same symptoms as you for over 8 years and like you felt awkward about going to my GP, for fear of being labelled a time waster.

However, it all came to a head about a year ago when my body "crashed". My GP finally diagnosed me with CFS, but rather than follow the NHS route, I underwent some private tests. I was almost immediately diagnosed with gluten intolerance. And within days of coming off gluten the "fog I had lived under for years lifted. Furthermore the aching joints and headaches went and the lifelong IBS that I had also suffered from disappeared almost straight away.

Interestingly my brother in law who has also experienced similar symptoms for sometime, was recently diagnosed as gluten intolerant. This time through his GP, who was very supportive. And like me the transformation in his symptoms was miraculous.

I would really recommend that you ask your GP for a gluten intolerance/vceliac test, as it sounds so similar. But remember to keep eating gluten until the test to ensure a relaible result.







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P7 said on 24 March 2011

CJbears79

I had the exact same set of symptoms for over 8 years, and my GP could not make head or tail of all the varied symptoms I had. I had a mjor crash in early 2010 and was eventually diagnosed with CFS.

However, following tests via a private clinc I was diagnosed with Gluten intolerance. The minute I cut gluten out of my diet the "fog" lifted and a year on I am completly recovered and in full health once again.

My brother in law was also suffering the same symptoms and has too recently been diagnosed with gluten intolerance.

We were also both diary intolerant.

I would ask your GP for a gluten intolerance/celiac test.



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fitzyfitz said on 16 March 2011

Hi,

I thought I would comment in response to cjbears - I don't have this condition but was in a relationship with someone who did - i was also knocked sideways from glandular fever for maybe 3 years - so thought I may be able to help - at least a little..

It may not be CFS - you sound really like me after glandular fever - it also took my immune system ages to recover! I had no energy and poor concentration for quite a long time - thankfully it passed! either way it needs checking out, there seems to be a link in particular to glandular fever (and not resting properly after) and this condition.

My ex partner went through so much to get a diagnosis and suffered both in her education and at work with managers not understanding etc - this is classed as a 'hidden disability' and if a manager does not make allowances for you they are discriminating against you. Allowances may be made if you have a firm diagnosis. If you do get a diagnosis I would ask for an official meeting and give them a list of the allowances you need to be made - it gives them something to work to and if they agree to do this (and do not) then you have grounds for taking further action, I would ask your union member to attend the meeting.

Is this helpful - hope so

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cjbears79 said on 15 March 2011

Hi,
I think I may ahve this condition, but I am too scared to visit my GP incase he thinks I am a timewaster and my symptoms are so broad.
I am 32, feel constantly tired and achy, with headaches and also suffer with my stomach, which was diagnosed as IBS. I cannot eat dairy products, either. I sometimes feel I am in a "fog", and cannot concentrate at the school where I work.
Can anyone help?

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J Alex said on 02 March 2011

(Sk4DAncer)
In response to your post, I think you may be able to claim sick benefits from JSA. I am just about to lose my job because of this illness and have been told i may be able to go on sick. Although id much prefer not to as ive worked ever since i left school at 17. I be making a call very soon as my statutory sick pay has come to an end and i have no other way of surviving without some sort of benefits.

(emma)
I am in pretty much in the same situation as yourself. I caught glandular fever in july last year and i have never been the same since. 24 years old left college last year and went to work and unfortunately now look like losing my job. Went to an infectious diseases clinic and was told its most probably CFS now as it has lasted well over 6 months. Unfortunately i dont think there is much you can do to make your doctor help much. Im guessing you had all sorts of blood tests and examinations like myself and feel like no one is helping you or understanding.
It may not be much consolation to you but i have heard of quite a lot of people who have been diagnosed with glandular fever in the same situation as yourself that have taken a very long time to recover.
Try not to worry too much as doctors like to tell you its uncommon to have it this long, but i have heard of a lot of people that have had lots of problems with the illness a long time after the initial infection.

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J Alex said on 02 March 2011

Ohwell looks like this horrible illness is going to cost me my job. Doctors cant do anything apart from give me sick notes for work which are no good now as ive had too much time off work, they are looking to terminate my contract.
I bet im not the only one who is tired of being told to eat a healthy diet or do some exercise and youl prob be fine.
Ive tried most things and a little exercise here and there does help occasionally.
Its no coincidence that a lot of people including myself who have been diagnosed with glandular fever then later on with CFS are still ill a long time after the initial virus.
Absolutely fed up of it.

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User533757 said on 01 March 2011

Hi,
I was wondering if anyone had some advice for me. I was diagnosed with glandular fever a year ago and basically have never been the same since. I fit all the symptoms for CFS/ME and have done since I was given the diagnoses for glandular fever. However, it seems like my doctor just isn't listening to me. I have noticed that others seem to have had problems with GP's refusing to acknowledge the illness so hopefully someone can help. I have listed all my symptoms multiple times, however, I seem to be brushed off with depression and a bunch of weak explanations for all my other symptoms. It's as though they refuse to see all the symptoms as part of one illness such as CFS/ME.
I'm 24 and can't afford private medical care at the moment as I'm not long out of uni. This illness has destroyed me over the last year; I've gone from having buckets of energy and being fit and active, to not moving from bed for days on end. Does anyone have any suggestions on ways to approach my GP to get them to listen, or any other routes I can take that will not cost me money I just don't have?

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Sk4DAncer said on 15 February 2011

Hi,

can anyone help please?? I was recently diagnosed with CFS....after having lost two jobs as I kept having so many days off work. I'm now at home. What benefits can I claim? I am female, aged 56.

Many thanks for any advice...all this is new territory for me.

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J Alex said on 12 February 2011

Hi, i am 24 years old and was diagnosed with glandular fever at the end of July 2010 and have never been the same since.
I have had all sorts of symptoms from muscle aches, indigestion all sorts of stomach bowel problems and severe fatigue, sleep disturbances dizziness the list goes on.
I was recently told by a clinic i had attended after they had done a number of tests that i have chronic fatigue syndrome.
I find whatever i have so frustrating as i used to be fit and active up until i caught this horrible illness. No one seems to understand just how i feel, people just seem to fob it off as me just being tired but i can tell you it is a lot more than tiredness i feel. Would be nice to speak to other people with this condition so that i can compare symptoms so that i know i am not going completely mad, anyone interested just give me a shout as i cant take much more of people who dont understand what im going through.

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Linzi25 said on 05 February 2011

It infuriates me the ignorance by my g.p's and the lack of recognition and treatment of CFS/ME on the nhs. I was diagnosed a year ago now after my friend recommended a Private specialist who is also an ME sufferer and who trained under Dr.Perrin. I am just glad that after 7 years of being unwell after having Glandular Fever that last year I finally got recognition and am receiving treatment, all be it private and expensive. I receive special massages to release the flow of toxins from my brain (causing brain fog, memory loss, neck and back pain) And am on a range of supplements. Its also been recommended I see a nutritionist and allergy specialist as my immune system doesn't work properly it my body fights itself and other things but struggles fighting infection. I have a lot of allergies, eczema, asthma, dairy intolerance and I produce too much stomach acid causing indigestion, heartburn and reflux. I need to find out what I'm allergic too so I can avoid it, hopefully then the supliments will work to improve my immune system. At nearly 25 I feel like I'm falling apart. I got ME after having Glandular Fever at 18. There is hope and help out there for CFS/ME sufferers. Look to the private sector and find someone who deals with it in your area.

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JULIE4 said on 03 February 2011

I agree totally with what just a mum said! Get tested for lyme disease!!! I too had most of the symptoms of ME and other symptoms too. While I was ill, the doctors suggested that I may have carpaI tunnel syndrome, trapped nerve, MS, lupus and MND. When I was told in the end that it was just ME, I was determined to find the cause of the symptoms and not just treat the symptoms. So many symptoms would come and go.

I tested negative on the NHS test for lyme disease but positive when I was tested privately. There are a lot of arguments over the reliability of tests at the moment and they are trying to improve them. I contacted a charity in the UK regarding lyme disease and other tick borne diseases and they were able to give me the help and support that I needed. I feel so much better now that I've been on the antibiotics and am so relieved that I decided to pay privately to get tested. Who knows where Id be if I hadn't of done that.

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just a mum said on 02 February 2011

My two daughters have had all the symptoms above and were ill for five years, finally bed bound ,no school, sent to phsycologists fobbed off , told they had cfs. Out of desperation I found a private clinic who will test for everyhing and will believe you. Their diagnosis came back clear for xmrv but both girls positive for Lyme Disease. The relief of a proper diagnoseis is unbelievable,I used to think they may die and that I would never be able to help them They have been on non stop antibiotics with antifungals and a no sugar diet for 18 months now and they are finally starting to get better. They are going into school for 1 hour a week which I never thought would happen, and they have the energy to talk ,play cards and even argue! Please get tested at the proper place. The body does not behave this way unless its riddled with infection and the NHS just dosent get it.

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lorac1 said on 01 February 2011

Hi, ive suffererd in ignorance for at least 5 years. I cant remember how many years ago my sick certificate stated CFS! I always throught it was some kind of virus that stuck me in bed for a few weeks b4 an exchausted me returned to work. Over the years work has been the only place I could work b4 taking my exchasted, aching bones and joints, pins & needles back home to my bed. My husband has been fantastic but the house has gone to pot! Last year I had a tumour removed and had been led to believe or wanted to believe (not sure now with brian fog!) That all the numbness pain etc had been caused by the nerves being trapped in the throat and that all would be better! I was shocked when I reported to my gp that i was dissapointed that the feelings hadnt returned and that the pains & all other symptoms were still there and he replied oh the operation wouldnt have efected them they are part of your 'ME'.
I too have had an MRI after they thought id had a TIA but it was considererd to be a migrane / me effect although I have lost even more feeling and balance down the left hand side. Am going to return to work slowly over the next few weeks and just do my best to survive on a daily basis. Since looking for help on the internet I have found many heart rendering stories and although still feel Im struggling alone have just registererd on the map! Couldnt believe what I saw!
http://xmrv.me.uk/ We are all over the place and not just in our bodies and minds. Would love to find local contacts

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MandaJ86 said on 31 January 2011

Hi SadieLloyd98 and everyone else,

I have recently been diagnosed with ME too, I have had symptoms for the last 2 years. I used to be a professional dancer but can no longer do this as you can imagine!

I am currently working but finding it very very difficult and my absence rate isn't great which makes me stress out even more.

The only advice my doctor gave me was to do a graded exercise programme and figure out what makes me worse and avoid it basically.

Would love to talk to others with ME as friends/family/work havent got a clue...

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JULIE4 said on 27 January 2011

Im a 28yr old mother of two children and a few years ago I noticed I had a bite on me which faded but stayed with me for months. I didnt think anything of it. I started to get pins and needles in my hands/arms, headaches lasting weeks, a bad neck, numb feelings in arms,hands, legs and head, muscle twitches, joint pain from one joint to the other and pains all over, I was very cold and very tied etc, etc, etc. Got checked for MS and other things but doctors found nothing. They then thought I must be suffering from stress/depression and ME. After a couple of years of going back and forwards to my doctors complaining of different symptoms I found out through researching my symptoms that I actually had Lyme disease!! My NHS test came back negative for lyme disease, however I paid to have another Lyme test done privately and this came back positive. I was on antibiotics for a year and am now feeling much better! :)

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SadieLloyd98 said on 27 January 2011

Hi to all those who have been suffering or have been recently diagnosed with CFS /ME, now as you can all see there's loads of people with different views and feelings about this. Im 18 years old coming up 19 i used to dance and play sports when i was in school and went on to college to do musical theatre which included alot of physical activity i used to be so fit was always ill but fit and could do anything i was only there for a year and gradually i noticed my health changing drastically, ive always suffered with pain in abdomen had my appendix out 4 years ago. and still to this day i suffer with major pain in my stomach then my GP diagnosed me with IBS. The year i was in college i was always feeling very weak all my muscles were aching constantly i couldnt dance any longer then i started collapsing all the time and was rushed to hospital and they sent me home saying they didnt know what was wrong. Then another GP sent me for tests for addisons disease because my auntie has it and that disease contains feeling weak and tired etc. But that came back fine and ive been suffering because i had to leave college cause of being so tired and ill all the time in the last few months ive had pleurisy , shingles , eye infections , and im struggling to work cause everytime i walk around for a period of time my legs just go like jelly and i cant walk my head starts to ache i feel drowsy and then i have to lie down otherwise ill collapse and i find it hard to work full time i have to have a hell of a lot of time off due to this and ive been sacked 3 times because of my illness its honestly so hard not only that im having trouble recently with my periods im bleeding heavily and get more than worse pain with them and now GP given me Mefenamic acid for it. and i said to him look im getting fed up of not knowing whats wrong with me and he said it sounds like you have chronice fatigue syndrome theres no cure!! im suffering i find it so hard to live can someone chat to me about this!

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The Truth Will Out said on 17 January 2011

There are over 4,000 peer-reviewed scientific papers which clearly show biomedical symptoms of inflammation and other indicators if a patient is properly diagnosed with ME.

Although the UK press is not allowed to cover these (because the UK press handed over its independence to the UK Science Media Centre, whose advising scientists believe ME/CFS is 'all in the mind') there is a very good summary of them on the American CFIDS site:

http://www.cfids.org/about-cfids/diagnostic-testing.asp

They also have a very good, accurate, unbiased and meticulously up to date summary of scientific progress regarding XMRV:

http://www.cfids.org/xmrv/default.asp

The NHS could do a much better job of explaining in their "Chronic fatigue syndrome or ME?" box above that the World Health Organisation (WHO) formally annexed the pejorative term 'Chronic Fatigue Syndrome' to its classification G93.3 as an alternative term for ME, to avoid just this sort of misinformation.

NHS has made Chronic Fatigue Syndrome a dustbin diagnosis for anyone who is suffering from fatigue for any reason (cancer treatment, obesity, insomnia, depression and any other cause). It would be much fairer to patients to make the distinction between 'chronic fatigue' the symptom, and Chronic Fatigue Syndrome/ ME the condition. At least then patients without a formal ME/CFS diagnosis might get the treatment for their respective conditions that they are entitled to, and ME patients would lose the 'dustbin' tag.

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romyboots said on 14 January 2011

Jake
This might be a more helpful site for young people with M.E./CFS.
Hope you feel better.

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romyboots said on 14 January 2011

It is important to understand that M.E. is a physical, neurological disease - it has been classified as this by the World Health Organisation since 1969.

However, GPs are trained to regard it as a psychological problem - this is why it is so difficult to get any real help from them.

Research money has been put almost solely into projects that regard M.E. as a psychological problem, so there has been no progress on finding a cause, and therefore a cure, here in the UK.

There is great progress being made in America at the Whittemore Peterson Institute (www.wpinstitute.org) - their scientists have discovered a virus that is in the blood of many people with M.E.

Despite numerous attempts to undermine this research, including 'scientific' papers of dubious merit, this research seems very promising in finding the cause (and potetially a cure) for this terrible and very medically neglected disease.

I have this disease too, and the biggest help to me was understanding and listening to my own body, and not pushing myself to do more than I know I can. This approach has gradually improved my health and I am able to do things now that I couldn't do before..

There are biological reasons why people with M.E. should NOT increase their physical activity beyond what they are comfortable doing as their bodies are not physically equipped to produce the required energy, and attempting to can be very damaging. For this reason, Graded Exercise (gradually increasing your exercise) and 'pushing yourself' is a bad idea.

A good source of support and information is Invest in ME.

Wishing everyone with this disease the support and help they need to deal with this, and a gentle warning to avoid anything that suggests this biological disease has a psychological origin. In time, this silly idea will be proved to be as backward as believing the Earth is flat.

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alincoln said on 14 January 2011

there is a useful website which can be found by doing a google search using keywords "chronic fatigue syndrome". it is the first website to appear on the list.

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JakeA318 said on 09 January 2011

hi... I'm 14 and trying to live with CFS, it's making me so depressed, does anyone know what I can do to cheer myself up?

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Lainalanes said on 29 December 2010

Hi I wonder if you can help. My fiance has been diagnosed with ME by his doctor & is in the process of having tests requested from our local hospital. I want to be as supportive as I can. I have been through a lot of bad times myself as I am a widow & lost my husband to a brain tumour 2 years ago. I had to watch him suffer & die. I need help to understand this illness so I can cope with watching someone else go through pain & suffering. I find it difficult as my husband was diagnosed 3 1/2 years previous while I was pregnant & now I am pregnant again while my fiance is having tests. I would welcome any comments you have so I can be supportive to my fiance at this difficult time whilst trying to keep on top of my emotions. Thanks x

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Beejay61 said on 12 December 2010

Aromatherapy massage...I have had ME for 18 months. I won't go into my symptoms as I have them all so you will know how ill I feel. I now have a massage once a month. The best thing is that I go there feeling awful and come out feeling normal. I sleep really well afterwards too. I have been doing this for 4 months and each time the effect lasts longer. I still feel normal today. This wont last as once I am at work tomorrow I will start to struggle again.

Its not cheap and I wish I could have them more often but it is worth it to feel normal at least for a short time. I am also following the NHS guidelines on graded exercise, pacing, relaxation etc. Works but takes a long time so I use massage to help me thorugh it all.

Good luck to you all. I intend to beat this illness and I hope you all do too.

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JoJo1982 said on 18 November 2010

Hiya,

I'm a 28 year old girl with a very similar story to a lot of you- I am about 6 months into living with CFS and (like most of us) am living a very different life to the one I lead prior to becoming unwell.

I have created a website which captures some of the things that I have tried that make me smile/use time productively without too much physical/mental exertion. Things became a lot easier when I let go of being angry and realised that I have little control over this, and that with a bit of creative thinking I can carve a happy life for myself without as much energy as I used to have (until I get better that is!!)

www.notallaboutme.com

Please add your tips to my blog and I'll add them to the main list- it would be great if this became an interactive tool where we all support each other.

You can also follow me on Twitter and Facebook which can be found through the website).

This isn't a website that provide information about M.E and I've purposely kept it that way, I think we all need a forum of positivity during this time.

Good luck to you all x

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CS1123 said on 16 November 2010

I am 21 years old, and three years ago i had been diagnosed with glandular fever. I have not felt the same since. I have constant muscle aches, headaches and migraines, poor concentration, nausea, have irritable bowel syndrome, sore eyes, throat and am extremely tired everyday. I have seen 7 doctors who all said there is nothing wrong with me as blood tests came back fine. But the 8th doctor i saw said i had chronic fatigue. I find it so hard because no one around me understands and i feel like i am constantly whinging to everyone around me which really gets me down. The doctor put me on anti-depressants, but said there was nothing else she could do and that i would just have to get over it. I have read most of the comments and it has brought me such relief to know that i am not alone and actually far better off than most who suffer with it. It is just so hard to live a normal life, and have most doctors look at you like you are making things up. I am going into my second year of university and doing it by distance education as i am not able to do it on campus. I am glad i came on here to know that i am not alone.

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xmrv1990 said on 10 November 2010

I am yet to be diagnosed with CFS/ME, i am just in the stages of been reffered to the specialist. I was diagnosed with glandular fever May 2009 and still have not recovered. I have visited the GP on numerours occasions, with symptoms of tiredness, blurry vision (unable to concertrate), headaches, muscle tiredness and so on... I stopped going from May 2010 as i was made to feel like i was over exaggerating and i was just 'getting over' glandular fever. Two weeks ago I fainted (for the first time, i am 20) I came over all dizzy, sick and my heart was racing. The paramedics were fantastic, the hospital were terrible (they thought i was pregnant!!) I visited a different GP who ran blood tests and an ECG to find nothing. I have now been reffered to the endroconologist. I have not been diagnosed with CFS/ME but it has been mentioned and from reading everyones comments i suffer with nearly every symptom mentioned. I dont feel like i am suffering like some people. But i am not how i was 18 months ago. My life has changed completely. Ive gone from living my life,working full time and having fun to needing to sleep constantly feeling like ive got flu 24/7 and only managing as little as 2 hours at work at a time.
I strongly believe in the XMRV theroy, it is not shown on the NHS website because it is not recognised by the NHS service as they will find that a very percentage of the population is infected with the virus. I believe this ME/CFS when reading about it it explains how and why we feel like we do. People are been tested for the virus in belguim and canda but not in England, why??!!
People with the virus can not give blood...
Anyway... Any feedback on how to manage the syndrome would be greatly appreciated as i am young i want to carry on working and living, right now it doesnt feel like i can.

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Leigh Lee said on 08 November 2010

It was so comforting to read all these comments. I am 22 and have been suffering for a few years. After having my son at a young age of 18 I started to feel more exhausted than ever before, I did think that it would go away over time, but 4 years later in remains to get worse whilst at the same time my appetite grows but I continue to lose weight. 3years ago the doctors realised I was lacking in vit D so had supplements, although via tests that showed my vitD was increasing I remained to feel just as bad. My family was convinced I had hyperthroyidism as they know me well and this is nothing like what I am usually like. After tests for years It was showed that this wasn't the case, my doctor looked at me like I was mad, trying to make out I was depressed, but my motivation has always still remained. I have now been referred to a consultant regarding CFS and after looking at this page although I wish nothing was wrong I do hope this is the end and I finally get a diagnosis as I feel like I am going mad, it has been 4 years now and I continue to feel tired wake up feeling as though I havent rested and as if my body is brusied and spend alot of my days confused and having trouble concentrating which is really affecting me as I have so much I want to do, including business plans I have set up from years ago but am not in the right state at all to continue through with it,

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lorraine j said on 05 November 2010

hi HOF thanks for your reply , yes my son has had his thyroid checked it came back normal has have all the other tests thats why they can diagnois CFS/ME he is ok for now still in loads of pain but working and i have to be strong for him . our docs arnt ppl who we can talk to abt other illness let alone this one . but thanks for your reply take care x

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HOF said on 02 November 2010

Lorraine J,
It must be devastating for you, seeing your son so very ill. Please don't give up, search the internet., do lots of research, I am convinced there are lots of factors involved with this awful condition. For instance, has he had his thyroid checked? Hypothyroidism and CFS often go hand in hand,
You don't have to gain weight to be diagnosed, I am very slim and suffer from underactive thyroid. Pester your doctor, if he doesn't want to help, get another doctor, join support groups, etc.
I am sure there will be other people like you going through the same ordeal, I really do feel for you.
Keep fighting

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lorraine j said on 27 October 2010

hi my son who turned 21 begining of october has just been diagnoised with cfs/me he began being ill in 2009 lost 5 stone looks like skin n bone has had loads of test, mri scan, cat scan,abdomin scan, endoscopy, at least 10 blood test each time we go hospital been under 3 specialist, hes been told he has cfs/me on the 19th october people think its great to have a name for the illness but nothings change, john still has it and is still working . struggling , forcing himself to go. hes young and dont wanna be off work . i cry to see him in so much pain , people think he hasnt got it cos he works. his symptoms are flu like symptoms, muscle pain joint pain weight lossup to 5 stone, head aches, swollen glands and memory loss. hope you all on here can fight it and be strong, dont give in . get better

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IHAVECFS said on 26 October 2010

i Also worked for a long time with CFS, which in the end caused more harm as i got depressed not being able to work and provide for my family. I then gave up work and claimed ESA after a short assessment i was placed in the work group. I appealed this decision and after a year and the support of my doctor and psychiatrist i still lost the appeal so the government thinks i can work when in reality i can't hover the lounge without needing a rest also i have been assessed by the council for a walk in shower and a stair lift can anyone help me convince these people what it is to live with M.E/ C.F.S

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mivat22 said on 25 October 2010

To janeymac c Im also diabetic for 25 years now and im 38 years old and have finally had a diagnosis of CFS i also suffer from underactive thyroid for the last 15 years and am now wondering if all those years ago i was mis-diagnosed with that and it was the start of CFS, i have frequently complained of being tired not just mentally but physically too and recently its got worse, I had a medical examination with work about 3 years ago and the consultant put on my form that i had Chronic fatigue syndrome but no one ever said or explained what that was to me so i just carried on, however as my symptoms have got worse i went to nag the local Gp again to why am i soo tired and they mentioned the CFS again so this time i querried what it is and what it means, they couldnt tell me much just that that is why im constantly tired and to build my exercise regime up as thats the only cure?? but at the same time not to push myself?? Hence why i decided to come online and do my own research, which is how i ended up on here.

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lesley minx said on 05 October 2010

hi,janeymac,i have read your message that you left me . i would love to make friends so that we can support each other during this difficult time . iv had cfs for nearly 2 years now and oh my it is bad and deppressing my life has gone . iv seen a specialist nothing can be done , but i do take tramadol for pain releif which also helps with feeling tired and lifeless, it does help a little . the sad thing is so many people just dont care and understand cfs'me. good luck for now x

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Kevin Beynon said on 29 September 2010

Please look into the nutritional aspects of CFS/ME.

I have personal experience of this and found that a nutritional programme helped combat the yeast infection in the gut that caused the symptoms.

It's important to remember that Doctors are not trained to 'cure' illnesses, they are specifically trained to go from identifying symptoms to prescribing a drug response. This is the reason CFS/ME has not had the attention it deserves from the medical establishment and doctors scoff at the idea of it whilst people are suffering.

Please Google the terms 'ME' and 'Nutrition' and take a close look at the results.

I hope this helps and that you find some relief.

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fi67 said on 28 September 2010

Very tired at the moment, but could I just point all those who have made comments or know anyone with ME to the Action for ME website. Very useful information and updates on research etc. The also provide very useful leaflets. I was diagnosed with ME almost 10yrs ago. By that time I'd already had it about 5 years. I find it incomprehensible that Dr's here prefer to call it CFS because they can get their heads around it and it's convenient for them. Until they can grasp the very basics of ME there is very little hope of any progress as regards how it should be treated. I'm also astounded that all these comments are on the PCT website - there are so many cries for help. understanding and lists of symptoms - I can't help but wonder if anyone who works for the PCT actually reads any of this and if so with a snigger, or wondering whether perhaps there needs to be a rethink as to what can be done. 10 years on and I'm very very angry!

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Kitty2010 said on 09 August 2010

Just like a previous sufferer of ME/CFS I was sent home from hospital after loosing the feeling and movement in my feet. I was in for a week.

The Dr's did a lot of tests including MRI and neurological tests which involved small electric shocks. - Pretty painful.

When the tests came back with no answers a consultant told me (infront of 4 other Drs') that my mystery paralysis was caused by CFS and I should get on with my life and do some excecise!

The consultant went on to tell me they had 'No medical interest in CFS' and that there aren't Dr's who would say anything different. I asked if NHS Drs' were trained to think the illness was psychological. The doctor said 'well...' and raised their eyebrows!!

While I cryed, I told the Drs' that there were so many other things I would LOVE to be doing - to get attention they seemed to think I was looking for...

"Like doing the A-Levels I had erolled to do during a 'better' spell I'd had recently. Doing my Batchelors in Midwifery and delivering babies! I want to have so much more quality time with my beautiful children instead of hearing them playing and laughing in the garden while I'm in a dark bedroom! I'd rather be achieving these things than sitting in a hospital bed for a week."

I hope that at least one of the Drs' who heard me might do some of their own research instead of being conditioned by the system. Perhaps they will have a bit more tact if they see another patient with the same illness.

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shelljonas said on 05 August 2010

im just going through diagnosis stage have been ill since may .After ruling out a stroke and MS they now say it may be CFS/ME the symptons are the same the tiredness is so bad and my speech and concentration is really poor, i feel so helpless and so alone and wonder if i will ever have my life back everyone says rest!! but i feel like thats all i do and never feel any better im finding it hard to deal with and after reading this site now know im not alone im hoping that this diagnosis will be soon as i need to know how to cope and change my life. simply things are so difficult having a shower, brushing my hair. My husband has been a god send and so have my children at 41 years of age i feel like i have aged overnight... im mad at myself for feeling self pity and feeling so low . Im trying to keep positive and hope the future is brighter :)

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pablomcf76 said on 02 August 2010

hi guys wondering if any of you might be able to help me/ ive had m.e for eight years now and have always worked. that was until jan this year i had a bad lapse which painfully i havent recovered from this time. my mobiltly has became extremely poor and doing very simply things like getting up and making breakfast is taking an average of two hours to recover from.
anyway thats just part of the problem the main one is e.s.a which i believe im entitled too as i have always tried to avoid being on benefits turns out that this might of been my undoing made myself much worse now. I am having to appeal there decision as my halve hour assesment awarded me no points and a fit to work lable i personally believe the assessor was one of the non believers in our illness judging by his report. I was a senior manager with the countries biggest d.i.y retailer and can assure ppl i would much rather have that wage than the pitfull amonut i get now. have any of you guys had this experience or have yous been successfull and if so how. We are meant to avoid stressfull situations but i have been more stress doing this than in 10 years in management. thanks for your time guys paul.

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cristobel1 said on 19 July 2010

Hi,
I have read all the comments on this page, and cant belive that most people havnt had any decent treatment. There is help out there with ME, however not through the NHS.

My mother had it for 20 years before she got any treatment, and I was diagnosed last year, and luckily I was able to recognise the symptoms my mother had, so was able to get diagnosis and treatment straight away. However it seems like alot of people dont know where to go. The Perrin Technique is very useful, and has helped me get well, and with constant maintinence of this, you can improve the symptoms. ME does seem to affect all sorts of people, but mainly people who are very stressed and high acheivers. It can also run in families.

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camone76 said on 15 July 2010

I've suffered from tiredness for years, ever since being around the age of 16. I'm 34 now, and have gone through all sorts of tests that all come back negative. Lyme disease, Anemia, Arthritis, and the latest being Sjogren's Syndrome and Raynaud's Phenomenon have all been negative. I'm always falling asleep at work and in meetings, I have fallen asleep standing up as well. I can sleep for hours but still feel tired. I suffer from constant aches and pains throughout my body; I wake up regularly with severe leg cramps; I get headaches almost every day; my eye twitches often; It sometimes feels as though my heart beats irregularly; I have a sore throat and dry mouth most of the time as well as dry eyes, nose and skin; my stomach and bowels always feel upset. I can still exercise, but sometimes my calf muscles will go into severe spasm and put me out of action for weeks. No one has been able to diagnose me with anything to date. However, after reading other people's comments here, the symptons of CFS sounds a lot like what I suffer from. I will be going back to the Doctor and raise this with him

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ljh said on 12 July 2010

I have ME/CFS but also have coeliac disease. Just wanted anyone with gastro symptoms to perhaps be checked for this as well, as a lot of the symptoms overlap.

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janeymac c said on 11 July 2010

hi lesley. i too have just been diagnosed 2 weeks ago with me/cfs. i dont know about you but i am now waiting to see a specialist. i like you feel lonely /depressed and would love to talk to someone with the same and also recently diagnosed. i would like to be friends. i am 47 by the way. i also have diabetes. i startes feeling ill with flu/constant sorethroats just over a year ago.i have become a recluse now and dont really socialise as i just feel too exhausted to even speak sometimes. i also the last 3months have constant arm aches/joint pains. it has also started this week in my left side of my back.do you have any eye-twitching(or anyone else out there have it?) my left eye constantly twitches. i feel a burden and that i am always moaning to others,as they dont understand at all. there is only my wonderful husband who supports me,but i feel like i always worry him, and put alot onto him as someadays i can barely get out of bed. he never complains and if not for him i dont know how i would accept this awful condition. thats why it would be grat to talk to someone in a similar position. anyone besides lesley who would be friends?

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just a mum said on 05 July 2010

In response to unyielding.
Lyme disease very commonly has neurological problems, and everything else you mention. I dont know for sure that it is Lyme but it could well be. Please get tested for it, my story about my girls is just above yours. I would have loved to have been given a clue by someone when I was desperately trying to find an answer to their awful and very different symptoms. Let me know what you think.

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unyielding said on 05 July 2010

HI all, iv been experiencing fits for over 10 years. However as of January this year i began to experience a wide range of unusual neurological symptoms and my specialist believes it to be M.E. Its not that i doubt this diagnosis although i find it difficult to deal with comments from others such as " oh does that mean you are tired all the time?" I wish it was just tiredness but i experience horrendous attacks which results in painful spasms,burning sensations, on some days inability to walk or even talk, rigidity-which results in collapsing often causing physical damage,brain fog, involuntary muscle movements, bladder problems to be honest the list is never ending and has not eased in six months. I pray for strength for us all and understanding from others.

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just a mum said on 19 June 2010

my two daughters were both diagnosed a year apart as having chronic fatigue after being ill for four and five years respectivly. they were then referred to phsycologists to learn how to pace themselves and to live with this awful illness after seeing at least 15 different doctors and having every test under the sun. But I could never accept this mystery that could never be solved and I couldnt just watch the deteriortion(my youngest whos now 13 hasn't been able to walk for the last two years) neither attend school. I trawed the net for somewhwere that would test them for absoulutely everything imaginable because I just knew 100 per cent that they had to have some infection for their body to behave the way it was. I expected to have to go abroad but I finally found a place in Hertfordshire that after two months of them being tested I finally found out that they both have Lyme disease. The NHS test and treatment is pointless and useless. I truly believe that cfs and me is not some elusive mystery illness. It comes from an infection. Thats why you feel like youve got the most awful flu continuosly and worse.Please get tested for this. My daughters have been on antibiotics for a year, but they are slowly improving and not getting worse and worse like they would have.

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MM1508 said on 17 June 2010

This is the first time I've looked on this website and am now in tears after reading all your comments. I was diagnosed with "CFS/ME" (yes I agree with you all when you say fatigue is the least of it) last year and in less than a year of attending hospital they told me on Monday that they are discharging me. I couldn't flipping well walk unaided when I attended my appointment! My partner had to support me so that I didn't fall over ... the day before I couldn't even stand up ... when my partner attempted to help me stand so that I could go to the toilet I feinted and then vomitted as soon as I came round. How on earth can I be discharged from hospital care when still in this state???

I could cope with tiredness ... bring it on! It's the fact that my legs won't support me and I can't walk more than 10 yards without collapsing that I can't cope with ... why won't they listen? This illness has supposedly been around since 1880 so when on earth are they going to start doing something about it?

Like all of your comments I was a hard working, well-organised, active, fit and healthy person until I caught the flu. Since then my body has deteriorated so much that I now feel like I'm 92 (I'm 41).

Come on NHS ... get some funding into this illness and do something about it for all these patients who desperately want to be treated and cured. We don't want to be ill and a burden on the NHS ... we want to get better and get back to work.

We want our lives back. Please, please help us.

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Grandad said on 12 June 2010

I have had cfs for the last two years, I am 77 now. At one time I could barely spare enough energy to stand up let alone do anything. By accident I discovered that tramadol almost disappears the fatigue and most of the discomfort. I still sleep a lot though and get no refreshment from it. I pace any tasks and spead them out and can manage most things now. It CAN be managed.

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jorazz1972 said on 01 June 2010

wow it is so nice to hear other people with the sames symptoms as myself, I would love to here from any of you so we could see how we all differ in managing this illness ?
It is very hard to get to grips in not being as mobile as I once was, I was a very active person never was still at all, WITH horses and children and pets and helping other family members out, I think i burnt my body out in the end...

hugs to you all, ( we are not alone )

;0)
fruity72@hotmail.com

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linkel said on 21 May 2010

I was diagnosed with Fibromayalgia in 2008 after months of savere pain. I reduced my working hours, changed how I got to and from work and loats of other small things to try to get this pain under control however nothing worked and I was retired from work due to ill health in Sept 2009. After trying lot of different medication and different combinations of medication I think I have at last my GP may have found something that works, it hasen't taken the pain away but it has made it more bearable. I am taking slow release Tramadol and Lyrica the later I have only been taking for two weeks but I have found it has helped a lot.

I hope this inform is helpful.

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robA said on 12 May 2010

Despite having had friends apparently affected by ME/CFS, I've always been rather sceptical about whether this illness is real. I now appear to have symptoms very similar to those described by Dr Shepherd (above) including quite severe aches in the joints, poor sleep patterns and a feeling that I have flu. I'm 62 (seems old to develop it for the first time), am what might be described as a 'high achiever' (working lawyer/academic with PhD in history). But I've had, for nearly all my life, a depressive illness which has been controlled by lithium and fluoxetine. I've been taking these for about 15 years but decided a few months ago to wean myself off them because of a concern that prolonged lithium use, in particular, may lead to kidney damage. This action appears to have 'triggered' my present symptoms. I'm obviously extremely concerned that my ability to work may be impaired. I haven't consulted by GP on this yet and am loathe to do so in case I meet the same scepticism as I've always felt myself (serve you right I hear you say).

Anyone had similar experiences?

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missvacant said on 12 May 2010

@hdiam1988

I was in exactly your position about 3 years ago, a couple things you need to do, contact the Disability Student Allowance, and apply, yes you have a disability, they can and will help, they will give you equiptment to help you work from home (like a laptop, printer and i even got an erogonomic chair), and provide your university with information and guidlines to help you work. I wouldn't have been able to finish my degree without their help. thankfully my university was very understanding about my condition but the DSA will beable to help you and your university to come to an understanding. They can also provide essay support staff to help you write and plan your essays.

http://www.direct.gov.uk/en/DisabledPeople/EducationAndTraining/HigherEducation/DG_10034898

I really hope you find this information useful.

You're not alone!

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2alarmin said on 08 May 2010

The term Life begins @ 40 seems to have gone completely out the window here ! After two years of being unable to walk or move properly because of widespread pain, cutting myself off from society, no sleep, totally feeling sorry for myself, moody miserable then sometimes ok &..feeling as though people think it's all in my head & After seeing every specialist imaginable, along side a few GP visits. I have been diagnosed with three illnesses Fibromayalgia, CFS, and ME..having researched normally about 3 every morning.. It appears to me that they are all pretty similar.
Is this right?? fatique is pretty much acceptable it's the constant pain thats not....Anyone else in the same situation ? Not sure if you can e mail me from here but would be nice to maybe talk about it as I have just today come out of the denial stage..That was so nice to write that all down.

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hdiam1988 said on 07 May 2010

I have found it very interesting to read all the comments on here, im 21 and just been diagnosed with CFS. Im really struggling to cope because no-one around me understands how i feel. I am in my second year of uni and i am struggling and i fear that i will not be able to finish as i cant face writing essays and taking exams feeling the way i do. I don't want to quit and my parents are pushing me extremely hard to stay but i am really finding it hard! My uni are also not doing much to help only offering me a week extension on essays which does not really help. My doctor has put me on anti depressants to try and help but im really not sure this will help and i don't really want to be on them. does any one have any advice that could help me???

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apuskiduski said on 26 April 2010

I am currently off work with CFS. I spent 9 months battling it in 2005/6 and managed to return to full time teaching so I am more aware of my symptoms and what I have to do to recover this time.
4 years ago I found that a balance of taking 'vegepa' capsules, vitamins and minerals in a specific combination (recommended by a friend who had a tumour removed from his lung), paced activity and rest, massage, physiotherapy and acupuncture helped massively. This time I am also having counselling from work as this episode was triggered by a mixture of intense stress and a virus. I hope anyone with CFS will check out the vegepa site as it quite literally saved my life last time.
I eat healthily and, as I have developed an intolerance to alcohol, am at least not damaging my liver! However, each day is still a slog and simple things like ironing a couple of shirts, walking up two flights of stairs or to the postbox (four houses away) are difficult.
I believe in mental visualisation though and I keep seeing myself fit and well and able to teach full time again. That and the support of my friends and family are getting me through this painful phase of my life.
All the therapies and supplements are seriously expensive I have to say. I am fortunate to be in an insurance scheme, from work, which covers 75% of my treatments. Not everyone is in that position I know but there are treatments available through the NHS.
CFS is a nightmare illness and one that I thought I'd never experience as I was a mother of three children under the age of four, working full time, doing a masters degree at the same time, so indeed was superwoman and superwoman doesn't get ill. Ever. How wrong I was. This is an illness of high achievers - there are no 'lazy' CFS sufferers in my book. My best wishes to any fellow sufferers, may you return to full health in the very near future.

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pablomcf76 said on 23 April 2010

hey lesley ive had cfs/m.e for six years and have exhausted all main stream treatments. I have recently started on ritalin and have found it so far to be very benifical as it lifts the m.e brain fog and helps me to be able to focus. The biggest problem with our illness is the individual element to it which means that you have to try alot before you might find something that works for you. Another helpfull idea is to keep a diary i do this and it has helped me to learn to pace myself better. Your best friend can be the internet i have done massive amounts of surfing to learn more about how m.e works and different ideas on how to manage it. try both the austrialian and canidian m.e sites and good luck your not alone.

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lesley minx said on 12 April 2010

i am 37 and have just been diagnosed with me -cfs, iv been ill for over a year now and it can be very depressing and lonely . i have every symptom of this nasty illness , i would like to know if their is any way of making friends and talking to people who are feeling and suffering like me. sometimes just to talk to someone who understands and knows what ur going through can help.

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walkingdead said on 28 March 2010

I know this is going to sound horrible but I am so happy that I am not alone. And that I am not imaginening things. I am sick of people telling me that it is all in my head. I live all of the symptoms above. I am 35 and I am absoltely sick off waking up to another day of torture every single day of my life. Please please please. Hear our voice. Save our lives before it is all wasted away.. I dont want to feel like 85 anymore :(..

PS: If nyone know any medication that has done them good. Please share...

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Skeptical said on 17 February 2010

Interesting that I, as an actual sufferer of M.E., just posted an informative and reasoned comment giving an account of what the real symptoms of M.E. are - that is, NOT 'tiredness' but a plethora of horrific neurological and immunological symptoms alongside which 'fatigue' is only a minor part, only for it to be deleted within minutes. I see that this site is censored for comments by people actually suffering this wretched disease who know from personal experience that 'tiredness' is far from the main symptom, or even a symptom at all. I wonder why?

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Skeptical said on 17 February 2010

What infuriates me about this page and so many other similar articles about M.E./'CFS', is the continual fixation on 'tiredness' as the main symptom, or even a symptom at all, for those of us who are actually suffering from M.E. Anyone who actually has the condition knows that fatigue is the least of our worries.

Weakness, dizziness, disequilibrium, muscle pains all over the body, hypersensitivity to light, sound and chemicals; inability to exercise or to perform any mild physical exertion because it makes the symptoms even worse (often delayed, so you don't know you're overdoing it), random attacks of violent tachycardia and other heart arrythmias, disruption of sleep (often waking numerous times every night), low body temperature (so that you're more susceptible to infection), severe gastrointestinal symptoms, sore throat, trouble swallowing, and headaches, are the main symptoms.

With all of that to deal with, fatigue is the least of our problems.

As someone else said below, the Canadian definition of M.E. needs to be adopted in this country. The current definition of this condition in the UK is a joke - it includes all forms of ordinary fatigue, i.e. 'tired all the time' symptomatologies, which, although distressing for those who have them, are not a patch on what those of us with 'REAL' M.E. have to deal with. Come on NHS, it's time to be dragged kicking and screaming into the 21st century and join the rest of the world where M.E. is acknowledged to be a real physical illness - in other countries it has long been acknowledged to be most likely caused by a virus (currently thought to be XMRV) and/or mitochondrial dysfunction, and not psychosomatic 'tiredness' as is, incredibly, the case here.

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dimplesz1690 said on 10 February 2010

i was reading through the comments, i have MS Muiltiple Scclrosis. but fo thhe past few months ii have been so tired ii cann't control iit. ii end up falling asleep sitting uop at the comp! i'v alwayys had pain with my MS but i have been getting really bad paiins in myy hips and arms. am on strong medicatiion foor my ms annd go to physiio but all my new symtomes look like ME. unless it'ss a relapse am hhaviing just now. but iv had B12 shots and am onn iron tabs as am animic to. so am a very tired person justt now. it would bee great if someone could reply see if your gettiing anny of thse symtomes. tack care .

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cottonbud said on 28 January 2010

i have not long been told that i have m.e/cfs and finding it really hard to deal with the symtoms the worse off all is being so sleepie and poor memory loss. i have also lost my job and payed off through ill health. I have a great doctor who is looking after me. and i start a new drug and start a new trial that is starting on 27th feb fingers crossed it works

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Woodlandia said on 13 January 2010

I have had ME since 1984 after a bout of glandular fever. I have had a variety of symptoms which have effected my nervous system, endocrine system and immune system. Tiredness/fatigue is just the tip of the iceberg when cataloguing symptoms. I have found the pain and poor memory/concentration, the hardest to bear, as I've felt like I was functioning at 20% of my normal self. At my worst I used a wheelchair. In the early 2000's I started to improve, but was knocked right back in 2007 when something catastrophic attacked my nervous system and has left me with painful neuropathy all over my body. I have no doubt a mixture of stress, anaesthetic during an op and a virus etc. all had their part to play. I wish I had learnt to look after my body at an earlier time and not get anxious and upset over silly things. I am now mentally in a good place, after learning NLP and LP and I continue to seek help to maintain and repair my damaged nerves.

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pablomcf76 said on 30 December 2009

hey guys ive had cfs for 6 years brutal isnt the word for it. Try patient.co.uk lots of info on there in regards to cfs. Tara there could be a hundred things causing your tiredness as cfs has more than just tiredness itself i for instance suffer daily blinding headaches and pains up and down the backs of my legs best place to start is with your gp but be warned it can be a long hard fight to get it confirmed. Good luck.

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JustinReilly said on 29 December 2009

The NHS' adoption of the extremely inaccurate, 'Oxford' definition of ME/CFIDS, greatly muddies and hampers the science and understanding of the science. This is because the Oxford definition purports to describe 'CFS'; but instead describes Idiopathic Chronic Fatigue i.e. a wastebasket of unexplained states of chronic fatigue. Please change your official definition to the Canadian ME/CFS definition, which is the most accurate definition by far. If the Canadian definition is adopted, useful information will be generated by studies and the patient community will be very thankful and much less combative. Thank you.

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tarafiddes9 said on 11 December 2009

Hello. most of these symptoms you have described i am experiencing. i sleep up to 20 hours a day. i am always tired and it is effecting my college and relationship id this normal? what can i do?

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polly125 said on 20 November 2009

ive found the info on xmrv by scrolling back through the news items on the home page but why when you put xmrv into the search box does it not come up with a link to this? me/cfs sufferers need to be able to check on the info of this virus it is an important breakthrough in research into this condition

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polly125 said on 20 November 2009

can i ask where the information on the XMRV virus which has been connected to this disease has gone off this website ?

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