Chronic fatigue syndrome - Symptoms 

Symptoms of chronic fatigue syndrome 

The symptoms of chronic fatigue syndrome (CFS) vary from person to person and there are often periods when they are better or worse.

There may be times when your symptoms improve and you'll be able to do many normal, everyday activities. However, at other times your symptoms may flare up and get worse, affecting your daily life.

Fatigue

The main symptom of CFS is persistent physical and mental fatigue (exhaustion). This does not go away with sleep or rest and limits your usual activities.

Most people with CFS describe this fatigue as overwhelming, and a different type of tiredness from what they have experienced before.

Exercising can make symptoms worse. This is called post-exertional malaise, or 'payback'. The effect of this is sometimes delayed – for example, if you were to play a game of sport, the resulting fatigue may not develop for a few hours afterwards, or even the next day.

People with severe CFS are unable to do any activities themselves or can only carry out simple daily tasks, such as brushing their teeth. They are sometimes confined to their bed and are often unable to leave their house. 

Other symptoms

There are other common symptoms as well as fatigue, although most people do not have all of them. They include:

  • muscular pain, joint pain and severe headaches
  • poor short-term memory and concentration, and difficulty organising thoughts and finding the right words ('brain fog')
  • painful lymph nodes (small glands of the immune system)
  • stomach pain and other problems similar to irritable bowel syndrome, such as bloating, constipationdiarrhoea and nausea
  • sore throat 
  • sleeping problems, such as insomnia and feeling that sleep is not refreshing
  • sensitivity or intolerance to light, loud noise, alcohol and certain foods
  • psychological difficulties, such as depression, irritability and panic attacks
  • less common symptoms, such as dizziness, excess sweating, balance problems and difficulty controlling body temperature

Page last reviewed: 20/03/2013

Next review due: 20/03/2015

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Comments

The 48 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Jessicakay said on 21 September 2014

This is all new to me. Was diagnosed as anaemic but apparently not that anaemic now. However yesterday after walking to shops - 5 minutes- my legs became so weak and I was so fatigued I couldn't carry on. Ended up in a shop sitting on chair with the help of first aider. Couldn't walk a step. Blood tests all seem ok. I have been tired for some weeks but now can hardly do anything. Any help?

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Paulxxx111 said on 06 August 2014

Note: "I feel starving and want cereal immediately. I will soon." Follows on to "My brain is something I'm worried about" which pasted somewhere above. So sort of read upwards. I am 47, have been getting bouts of cfs for about seven years. Doctors each time have said, "It's a 'viral' condition, there is nothing we can do about it, you'll just have to ride it" etc. I've riden it each time and often it will pass after maximum of three months at any one time. Sometimes three weeks, days etc. Currently it's been on me for five months, the longest yet and I'm just pointing my doctor towards this site, this condition, term and awareness. I feel it will worsen - is- with age and that it needs to be more widely accepted, in the same way as my Mothers PMT rages were once considered lock upable under the mental health 'acts' of those times. Because they didn't have the term PMT then. Sheesh!

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Paulxxx111 said on 05 August 2014

Following on from, "Wiped out!" And yes I too have had to endure people's ignorance and upsetting comments. Without a name for an illness, which people (family members included) can recognise, they do say some rubbish. Like, "Exercise" and "Try Berrocca" etc. It's good it is being now recognised here and thank you all as, I too now feel less alonnnnne!

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Paulxxx111 said on 05 August 2014

My brain is something I'm worried about, the way it becomes taxed easily, or over thoughtful as if I can't control it. Today as I lay here I feel a distant throbbing inside my head, but I think that that is the heat, the brain being 'cooked' daily, in the sun. I do not feel energetic enough to get up say and go swimming. I'd better eat.. I've eaten and will return to bed shortly to merely lay down, although admittedly I might sleep again. 1.40pm I fell asleep finally in the bath, have now woke and am sitting in the living room, again energyless. My body feels like it just lacks zest, even for a walk, which I now know from past experience would seriously exhaust me to the point of struggling to get from here to the park and back and then if so, once back, wiped out!

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Paulxxx111 said on 05 August 2014

Saturday Aug 2nd: last night I visited a friend by bicycle. He lives locally, but on the way home I rode to S, through O, up to A, back to Z. I sat up watching a movie til 2am slept. Today at 7.30am I awake to use loo, my chest feels tight and constricted, my head heavy as if leaded and that feeling of exhaustion on me. My body telling me early I'll be energyless today. I sleep again until waking at 2pm. My throat feels dry and mildly inflamed, my arms heavy-ish and that fever feeling under the skin, accompanying that lack of zest. My head also feels.. I don't know? Sluggish?

Sunday 3rd Aug and after staying in, as yesterday, all day. At 10.20pm I am watching a movie and aware that my brain feels taxed and headachey, as if thinking itself is too much. My head feels 'poisoned' almost? The ache behind my eyes could just be eye strain, but my cognitive awareness is strange, sleepy? I hazard guesses at early onset dementia, but that's because I am by nature a little hypochondriacal. My body also feels temperature sensitive, warm and slightly fevered beneath the skin still.

Monday 4th Aug: I've been able to walk today, to H, return by bus, dump shopping in and ride on bike round park for about an hour, before returning to cook dinner. My head though, feels.. Achey and over sensitive. I noticed also when in the park I felt like I needed quiet, but then at home whilst cooking head felt extra sensitised to even my own thought. Admittedly I feel better now that I've eaten. Over sensitive to tv volume, but I think I'm like that anyway, due to age. But I mean really sensitive, it gives me headache.

Tuesday August 5th. I'm awake at an earlier than usual time of 08.27. I'm not sure whether to get up, or attempt to sleep some more. I can feel that physical tiredness, sluggish weight to my body, am aware of an increased appetite recently, evenings and now, I feel starving and want cereal immediately. I will soon.

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Jelly93 said on 24 June 2014

I was diagnosed with CFS when I was 13. This was after I had a 3 month virus and 6 months post viral fatigue. It was horrible, it turned my teen years upside down and all the Dr said was that I would grow out of it. My mum couldn't bare to see me like a vegetable on the sofa so we tried everything I had osteopathy, cranial sacral therapy, hypnotherapy, crystal healing, reiki, even a hair strand test to find out what vitamins I was low on.

I had the condition for 3 years only because I was lucky enough to find out about REVERSE therapy! I had 6 sessions and haven't been back.

I hope you all get better :) xxx

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akilisa said on 24 May 2014

I have been to docs this afternoon and he is the first doc to mention cfs. I have had this overwhelming exhaustion for 10 years + and no- one has ever taken me seriously..
although he wants to do a B12 blood test and a sleep clinic assessment he said it's looking more like cfs.. I had heard about cfs/me but not thought anything of it and of course you kind of think oh it cant happen to me..
I am so relieved for him to actually take my symptoms seriously with out the oh its a virus or it's just because you are depressed ( I do have a mental health problem) but this is in no way connected if anything it is affecting it..
I really hope I can get some answers soon, but unaware of where to go for help and support.. reading these comments has helped me get a grip on the condition and that I am not going mad

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Frustrated1981 said on 27 April 2014

I have spent two years trying to find out why I am so tired and generally run down!!
I had Mesa 2yrs ago and was diagnosis did with a b12 deficiency. After 18 months of injections I am still exhausted if anything worse!
After what feels like millions of blood tests they have diagnosed cfs....... Have spoken to my manager who was very un caring basically said he is more concerned about the company than me as an employee!!!!
Has anyone else had this issue feel like he thinks I am making this up!!

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ssmoal31 said on 22 April 2014

I want to thank you all for letting me know that I am not alone, something I have felt for over 30 years. Although I have a wonderful understanding husband I do wonder whether the rest of my family and friends think I'm either lazy or a hypochondriac. I got quite emotional reading your experiences, knowing that was exactly what I was going through. Life has been hard feeling as I do, especially now I have grandchildren and don't have the energy to play with them properly. I find myself wondering how I was with my own children and wondering if they have suffered from my unknown illness. Thank you again for helping me realise that I am not going mad and that I am not alone. I wish you all health and happiness

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ennis said on 11 April 2014

What does G.P. do or prescribe IF they diagnose me/cfs? Has anyone suffered blackouts? I'm fed up of bloodtests that come back clear.

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Helsbells81 said on 07 April 2014

I have felt extremely tired now for the last 6 years, I carried my three children without any problems and things have just got worse since then. I have been on anti depressants for 6 years now. after visiting the docs for several years I've been told the tiredness is the last thing to pass. But this is a different tiredness. I can't sleep at night and sleep doesn't refresh me when I do sleep. Occasionally I feel like I'm to tired to breath. It's like hitting a brick wall. I have pains in my back and legs and at times I have very weak arms. Hoovering is a definite No No. My children wear me out, and that can just be home work duties. Working is difficult and I really struggle when I get home. My forgetfulness is terrible and my concentration very poor at times. All that said some days are great.
It seems my fatigue had effected my relationships both family and friends as I just do t have the energy to socialize etc. the hardest thing is guilt, as I feel bad when I catching a nap here or there and lying to people saying I have appointments just so I can go to bed. I feel like I've turned I to a really lazy person. I hate the way I've become and wish I could get some answers.:-(

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Martyn59 said on 04 April 2014

I started feeling ill in the mid 1980s. The symptoms (extreme fatigue, missed heartbeats, chest and shoulder pains, weakness in limbs etc.) got steadily worse. I was convinced I was on my way out in my early 30s. Eventually in 1989 I had to go sick from work. Despite lots of tests (ECGs, blood tests etc.) nothing significant was found and I was referred to a clinical psychologist by my GP as he told me it was all in my mind. Sure, I was anxious - who wouldn't be with all the symptoms I was experiencing. The psychologist helped me with the panic attacks I was beginning to experience and reassured me that I wasn't imagining the symptoms. he helped get me a referral to an ME specialist doctor in Essex who carried out lots of other tests including a muscle biopsy and a test for Epstein-Barr Virus. This showed a high antibody response despite the fat I'd never knowingly had Glandular fever. I was finally diagnosed with ME/CFS in early 1990 and spent 4 years off work. I did eventually recover sufficiently to return to work part-time. I even went off to Uni and did a degree followed by some years teaching. But eventually in 2011 I had to recognise that my body just couldn't take the physical stress and I did not have enough stamina. A lot of the symptoms returned with a vengeance, so I took early retirement (luckily my partner and I can manage financially). For those of you currently suffering without a specific diagnosis, I do urge you to persevere. If your GP is uncooperative, find another one, or insist on further tests and a referral to a consultant who knows about ME/CFS. Right now the symptoms are bad, but they do come and go and I manage to lead an OK life. Very frustrated at not having the energy to do what I want to, but try and plan my life to make the most of my limited stamina.

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Jilly37 said on 09 March 2014

I started with panic attacks and anxiety about 13 years ago along with IBS and was treated for that, been on anti depressants now for 9 years and have been ok no panic attacks , IBS even calmed down. Things have got progressively worse over the years and reading the symptoms on here is like reading my life story. Been to doctors recently because of tiredness and aches and pains and asked for thyroid function test to rule that out and gonna ask for hormone function tests to rule them out because I have to get this sorted out once and for all because it's driving me insane. Does anyone feel that nobody believes them? I'm constantly moaning about my body and how I feel and am sick of it now.

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longtermsufferer said on 14 December 2013

I will be 48 next spring. I first noticed how physically inadequate I was compared to my peers back in my early 20s - never been able to keep up but did try. Not much of a life; a continual cycle of work, eat, sleep - social life not much/ none. Very short concentration, gets tired quickly, much like most of you on here. And as the years wear on, the symptoms have got worse. I am going through another episode right now, so for the last few days I've called sick off work and have been in bed since. With years, it also takes longer and longer for me to bounce back - if at all. Just moving around the house is exhausting. My GP was disappointing. Long story: numerous appmts and tests... I have been seeing a deep muscle masseuse for many years to alleviate the different pains and stiffness etc, but my symptoms have escalated so I have moved on to a chiropractor whom I see monthly out of my own pocket because like some of you I was in a lot of physical pain. He advised I must slow down and pace myself, ie absolutely wipe out any evening activities after work, can't afford to do too much exercise... I rarely watch TV because it isn't just a physical thing, my mind collapses... feel like I'm already on the compost heap. I also go into this strange 'shock' state when I am worn out and after treatments; my pace of walking is like an old person's... and on and on it goes...

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ugadziaga said on 09 December 2013

After reading this I burst into floods of tears. It feels good to know I am not 'mad' and that there might be a diagnosis for me. I am 22 year old female. When I was 17 I suffered with overwhelming fatigue, occasional hand shivering and episodes of blackouts. I was tested for epilepsy but nothing was found. Symptoms persisted for couple of years and then disappeared. Now for the last few months I feel the same as when I was 16. I feel incredibly tired. I struggle with daily activities. I fall asleep while standing on the tube. I feel like I need to sleep all the time. But even then the sleep does not take the tiredness away. I feel very cold most of the time. All of my body hurts, as if it would be bruised all over. My head feels very heavy consistently. I had two episodes last week, for no particular reason where I would feel very dizzy and I would have blurred vision in my left eye only, and that would last for about 5 minutes. I wear glasses and 4 months ago I had my vision checked, which was fine. I went to see my GP and I explained how much of a struggle every day is for me. I had FBC + thyroid function tested and the results were normal. I had no further testes offered. I have a good appetite and do not feel depressed. I eat well, snack in-between meals. I take multivitamins once a day + cod liver oil. I thought I lack physical activity, but even after walking a dog in the morning I feel absolutely exhausted, I need to sit down as soon as I get back. I also began to suffer from 'panic attacks'. When I am extremely tired, I get frustrated for no reason to the point where I could probably hurt myself. My partner suffers most from it. I keep apologising but I think he just sees me as crazy, I don't think he understands I am unwell. I do so little in the house, I am afraid people will begin to see me as lazy as I have no diagnosis to tell them. Yesterday I had a busy day and today I feel extremely ill, my body hurts. I desperately want to get rid of this tiredness

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meornotme said on 25 November 2013

Sorry coul not fit it all on so cntd here from bottom comment wondered has any one else had these symptoms at the bottom of post. I wish you all good luck with your diagnosis and hope the information helps and sorry for the long post.

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meornotme said on 25 November 2013

Hi have been reading all your comments, and thought that I have same problems as everyone is describing,I have suffered for years with these symptoms and like others seemed to get better and then relapse been this way since age 11 now i am 48 so a lifetime almost, But of late i have been feeling a lot worse espacially the exhaustion and the high temperature makes me feel like im on fire i have to open doors and windows in the middle of winter as i cant stand it feel as if i am going to collapse from the heat, I also started feeling dizzy at first then felt like i was on a boat or something like that, feeling as though i would fall over and pass out, I am also having feeling of weakness in my muscles, I have very bad sleep patterns feel very unrested after sleeping and feel really tired through the day, i have been on antidepressants most of my life as doctors seem to think that is the problem, but as of late I have been feeling a lot worse the brain fog the lack of being able to hold a conversation that makes sense because of lack of remembering what i was talking about, i always forget things and stopped going out because of the feeling of dread and not able to concentrate long enough to have a conversation i get tired easily too. can't do any chores with out feeling tired all the time, so i recently went to the doctors with a written list of all my symptoms and she wants me to have blood tests to see if there are any medical problems, before i would go and see the doctor and could not always tell him my symptoms as i would forget most of them or just have a mental blockage trying to explain, so I think if you can make a list of all the symptoms and write them down and take them with you for refrence then the Dr will have to take you more seriously, I haven't been diagnosied yet but its only been a week, so hopefuly this will be the start of my recovery, also i have had a lot of migraines of late and problems with my ears ringing sounds and low humming sounds

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Lt80 said on 04 November 2013

I'm concerned as have been feeling dreadful for sometime so would be grateful for some advice. I've had persistent stomach ache, bloating, nausea and diharreah for a long time. The symptoms have become severe and although put down to IBS I had lots of tests. I am on a gluten free diet now but it's the exhaustion I struggle with. It takes me all my effort to get through my day at work and then I'm in bed by 7:30. They've checked my bloods for anaemia but they show okay. Even a quick trip to the shops the other day floored me and my body was aching! I had to cancel all plans for a catch up with a friend. I feel like the endless tests have not solved any problems and I'm struggling. Lack of energy is making me cranky :0( please help!

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missfinesse said on 04 November 2013

Minibadger, You are "Superwoman" I say that because u cope. As I do the same. But, It is very hard, debilitatingx3, lol, lonely, depressive, and I can say much much more. Smh
I too am up there where u are with the medical problems including Fibro, neuropathy now starting servere in my feet, so makes it hard to walk. But luckily I have to figure out a way to cope. My dad has a scooter, therefore I make use of it. LOL I cry, yes, say how miserable I am, blame ppl tryin to say I no how u feel. NO U DONT. But, I no they care. So I always go back mins later n say Thank you 4 caring. I actually am having problems just recently dozing off very quickly, no I don't have narcolepsy but its almost like that but a slow doze I can feel it coming but its scary. So I do have toget that cked out. Muscles kill me everyday, I'm a pain of 7/8/9 everyday but I kinda learned to meditate listening to classical music being I play violin,@ cello. Oftentimes, very hard to play, or moreoften, I can't play at all. But, it makes me happy to listen to it, and I kinda zone out for a lil while n listen to it. But, for the most part we, have to keep it going cause ppl depend and count on us. I am very proud of you for handling your business, because I definitely understand. (Hshaha) @ We laugh because we have to, 2 make us feel bttr. Lmao. Happy miserable sometimes cause of medical conditions living;))))

TEETEE (age38)

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minibadger said on 31 October 2013

It's reassuring to realise I am not on my own. Like many other people who have left comments on this page, I was always fit and full of life, and held down a demanding job as a vet. nurse. I rode horses, had loads of exercise and didn't have as much as a headache pill in the house. Now I am a wreck. It's a struggle just to get through the day. I give myself a list of things to do, including menial tasks that before this problem, I wouldn't have given a thought to, but it still requires all my effort to get through them. Putting the shopping away leaves me exhausted, and I often sneak off for a lie down. Any exercise leaves me bathed in sweat, drained of energy and feeling slightly ill.
I do have days when I wake up and the usual dull headache isn't there, and I can work as I used to, but then comes the 'pay-back', which sees me completely useless, headachy, miserable and fed up!
My husband is very dependant on me - I have to think for both of us and do the lion's share of the running of the house. And to add to the stress, we are down-sizing to a bungalow - I hope that having fewer rooms and no stairs, will help, but the stress of coping with all the paperwork etc. and the actual logistics of the move, all pile on the pressure.
I do find comfort in the fact that I am not alone in the way I feel. I hope the earlier contributors to this page are feeling better - it would be nice to hear from them with an up-date of how they have coped.
I am not going to see a doctor - waste of time!

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Smallvillegirlie said on 08 October 2013

I really believe I have CFS, but I am struggling to get a diagnosis. I aam overweight, but have had blood tests after blood test that says I am ok. I am constantly tired all the time, but have fitful nights sleep, but then I can hardly stay awake in the day. I get up feeling like I never slept at all and I am just completely drained of energy, to the point that I feel I can't do even the simplest tasks around my home because it requires so much effort. My husband has recently become a teacher and I now have to walk a long distance to take my children to school and I have found since having to go on these daily walks I have deteriorated drastically and when I get in from the walks I just feel like I need to collapse and I often just lie down on the sofa and fall asleep. It is awful because it feels like a heaviness just washes over me and I can barely move. I get terrible pain and stiffness in my legs too when I try to get up again. My husband has also become concerned because he feels I look dazed and confused all the time and I have said it is because I genuinely feel unwell and don't feel right in myself. I get so frustrated by this because I feel like I am letting my family down because I don't have the energy to do household chores and it isn't because I don't want to, in fact seeing it piling up around me makes me feel worse, but I just can't do it. I have suffered a phase like this before when my children were little and I used to get them to take a nap with me because I couldn't stay awake and didn't want to fall asleep leaving them unattended and it lasted for about 8 months. I don't know how I managed to recover from it the last time, but I did and things were better. But now it is happening again and it feels worse than ever, so much so that I find myself falling asleep while I am sitting up doing things on my computer or watching tv, I just doze off and wake up as my head flops down, then I have to stop what I'm doing and lie down. What can I do?

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simplus vodkodia said on 19 September 2013

My dad has had ME for over probably just less than 20 years.. he's got it bad and cannot do things that average human can and yet there are doctors that have the cheek to say its all in his head and there is nothing wrong with him? Like really?? Who the hell would not wont to do anything and spend tine with his family for 20 years?? He used to be an active gardener then he started getting bad.. but then he rested and started getting better and started being able to do stuff again like walking.. then a doctor had to ruin his life by making my day force him self to do things when he couldn't.. not to this day a doctor is saying its all in his head.. this needs to stop.. doctors need to use what part of the brain they have got to realise its not psychological, its sick what doctors think and so sometimes... they make people believe what is impossible...

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Elspeth88 said on 07 September 2013

Along with the vast majority of CFS/ME sufferers I am totally exasperated with people mistakenly claiming that chronic fatigue is a psychological illness. That thinking is about 30 years out of date and has been rigorously disproved again and again. It is this thinking which is responsible for sufferers being disbelieved and not taken seriously when what we're all crying out for is the scientific investigation and evidence. New research has proven that the stumbling block of CFS lies in mitochondrial disfunction, the cells are unable to turn ADP into ATP which produces the glucose essential for releasing energy from the cells into the muscles. Whilst it is true that CFS can cause depression and psychological stress has a significant effect on exhausting the adrenal glands (i.e. over adrenaline production messes up the balance of stress hormones and chemicals and depletes the levels of ATP) this by no means signifies that it is a psychological illness. CFS has myriad causes and there is a LOT of new reliable and groundbreaking research that has come out in the last 2 years. I would encourage all sufferers to look further afield in terms of research, CFS/ME related associations list articles on their websites and post links to new research on twitter.

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Elspeth88 said on 07 September 2013

Dear leathsasanach,

It is true that CFS and ME (different) affects people to varying degrees but it is always a serious illness which is very disabling. I don't mean to offend you but there is no way you have CFS if you can do 'hard training'. CFS suffers are by definition unable to do any reasonable level of aerobic training. I used to be an athlete and the exhaustion I suffer on a daily basis just being housebound these days is a world apart from the tiredness after training or competing I used to have. I can barely walk or do anything. I'm not meaning to discount you- you may have a similar condition like Fibromyalgia or joint hyper mobility etc but if you had CFS you would know about it, you would be definite about it. You would wake up and the first thought each day would be 'Oh my god, I am really really ill, my body is completely breaking down, what is going on with my body, I must really have chronic fatigue?!?'

Good luck with your training, I wish I could still run :)

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leathsasanach said on 27 August 2013

CFS I hear can affect people in varying degrees. I have competed in athletics since childhood and come from a family who have all been serious athletes. My performances have been affected since I came back to athletics in my late 20s by IBS seasonal affective disorder leg length difference serious depression but when I look through the descriptors of M E, I do think that I may well have it.

My body's reaction to hard training is that after 2 or 3 days training I have to stay in bed the next day to recover and after any races I ache so much in all my joints whereas all athletes I know don't have anywhere near as severe a reaction to exercise.

One shoulder had mobility issues and had to be injected with cortisone after a year of physio now the other shoulder is the same. I get profusely tired quickly and often my ability to concentrate is less. I suspected s.a.d. but wonder as sometimes things are as bad in the summer. I cannot drink alcohol anymore without sensitivity to it.

Do you think that CFS could be the issue? I heard that a British female runner who won Olympic medals may also have m e?

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northern monkey123 said on 22 August 2013

I was diagnosed with CFS about 7 years ago now, after a period of high stress levels, and a severe viral illness. Eventually I was referred to a psychiatrist who started with CBT on me. I responded very well to this treatment and within 2 and a half years I considered myself 'cured'.

The main thing I learnt from this is that structure and setting yourself goals is what got me through. I was told I couldn't do anything, might have to resit years of school, couldn't do GCSEs etc. yet I went about doing what I could so that didnt happen. I got work sent home, and just did everything bit by bit. The main thing was exercise - anything from 25 yard walks to slightly longer walks. Routine and determination helped me, and despite being told I couldn't do anything, I never had to resit a year and I am now studying at a top level university, and I actively partake in sports, and go to the gym 4-5 times a week. Occasionally around periods of illness or stress I relapse for a day or so, and I get a few of the other symptoms slightly on and off throughout the months of the year, but nothing I can work around.

I hope this provides hope to those who feel that its a lost cause. Just never be afraid to ask for help.

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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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Julbry said on 24 July 2013

Dear Mandi88 and others, I wanted to reassure you that CFS can get better. I was diagnosed with the condition in 2002. I developed the condition after a severe virus. I was off work for 2.5 years and never thought I would get better. But I did. I staggered my exercise with a strict pacing programme at home. By exercise at home I mean pacing myself with the smallest activities of daily living at a snails pace. I was so unwell at that time I couldn't even hold a telephone conversation without being exhausted. I was also treated with acupuncture and nutritional therapy at the same time at home. It worked for me. I am a nursing Sister by profession and I had to stagger my return to work with 1 hour shifts twice a week to start with. In the end I managed to get back to 30 hrs per week in a very demanding job. Stay positive you can get better. I hope my story helps. X

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mandi88 said on 09 April 2013

I have been extremely ill since October 2012 and finally have been diagnosed with cfs/me, which to be honest I am not sure about. I have chronic fatigue and have only left the house a maximum of ten times in seven months. Feel sick continually but never vomit. Appetite is normal but have put on weight has do not have energy to move. I have had numerous blood test, scans ,camera but every thing comes back normal. Feeling terrible . Please help some one tell me some good news when am I going to feel better

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prelapsarian said on 30 January 2013

Like others on here I would like to thank everyone who has shared their experience. I've been refered to a cfs team in Southwark which gives me hope. The symptoms at the top of the page are pretty much what I've had severely for four months. Sometimes it is hard to believe that something called "fatigue" can make you feel this ill. I really found the comment about "ME ME ME" useful because the disease does not tend to draw sympathy out of people. its kind of intangible. A good friend joked about me being "lazy". Fatigue alone i could probably handle (although that is bad enough with its heavy stulifying power) but the continual plethora of symptoms is baffling and at times very scary. Two years ago i was in a head on crash as a result of a police pursuit. I was treated for post traumatic stress and was a very diligent patient who, after months of sessions scored well in terms of low mental trauma anxiety. I was encouraged to question my underlying sense that i just didn't want to go out and do all the normal stuff I do like art and performing. This is because trauma is seen as psychological. I feel that now the intense stress of my crash is catching up with me. although i had been able to battle through milder versions of the symptoms things came to a head following a bad throat infection that I somehow knew was going to be different. I feel pretty cross with a friend who has continually tried to make me feel like it's depression. My hunch is that we will understand this disease much more fully in fifty years and there will be less stigma. Not much help right now but I've really found a lot of the comments on here very helpful and a source of comfort. thanks guys you're all great.

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Ashhangriffin said on 04 January 2013

I was diagnosed with cfs back in 1993. Then not much was known about this disease. I am so thankful for my doctor at Greenville, ms for being so diligent to find out what was wrong with me. I had very enlarged lymph nodes in my neck that were very sore. I got a high fever at one time and stopped breathing and started with seizures. I was hospitalized for a while but the seizures continued when my fever would spike. I was always tired. I could not stay at school all day my senior year and was great foul to the school for working with me from home. They found the epstine Barr virus but knew I had never had mono which they found strange. There were some abnormalities in my brain MRI as well. After much studding the doctor had the answer. Just before he did a lymnode biopsy because they thought it might be cancer. I had cfs. No one had heard of this, and it was hard for people to understand. I could sleep 16 hour straight then up for an hour and back to sleep for another 12. The doctor did not know what to do other than the seziure medication and letting me sleep when I wanted and do activities as I felt I could. He said he had no idea how long it would last because there was not enough study to tell. After a year and a half it was like a light switch just like he said it would be, everything stopped. I still if I don't get enough sleep for a few days I will get enlarged lymph nodes with pain into my ears and a sore throat. Then I know I will have a cold like virus for about a week and it goes away again. I am just glad I know what it is. It makes me be more aware of allowing my body the rest it needs.

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alishanriley said on 03 January 2013

Reading all comments about m.e and comments about doctors i totally agree with you all . i suffered like a lot of you and i found the brain fog and the sheer exhaustion so bad there was days i thought i was dying and terrified i went to docs loads of times n i thought they thought i was mad which made me feel worse i also gained 3 stone in weight which made me feel even more hopeless i after 6 yr s some1 suggested to me that diet coke which contained aspartame could b a factor i was drinkin that because of my weight gain so i stopped it took a few months but my symptoms started to go ??? i dont know if this helped or not or just coincidence but give it a try please if you take anything with aspartame in it stop for a while and see if it helps . now im am feeling better i have another problem been suffering with pain in between breast bone like a raw feeling i have lost 2.5 stone in weight has this happened to anyone else that has recovered i am worried sick there is something else wrong or is it me going back to my old weight i would appreciate comments back thanks

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auntyl said on 01 December 2012

Already given a brief rundown of my health probs, just by chance came of this page when typing in fatigue on net, desperate to overcome it, saw l ticked the list of symptoms, nearly all. l had one bad week as if flu, laying about off it, then not too bad, tiredness, but functioned a bit, two week later, back to fatige another bout of flu symptoms, So need diagnosis, Read others experience, simularities, the feeling that beth has of waking in the morning, after a restless night, or reasonable one feeling horrible, so tired, just will power to get up and function, slowly, nod off an hour later, do a bit more jobs, a physical and phycalogical battle, Though l,m obviously not as severe as some posting, as l can at times go out and about, be it tired and will power to motivate, but the theory that it will make you feel better as with exercise is wrong, it doesnt, just maybe mentally, to have done something, physically not. l motivated myself to visit cousins in ireland, just a 45min flight, l was shattered, despite a 2hr sleep on arrival, l then managed to fall asleep at a rock and roll show in the evening, prebooked, embarressing.
Got worse since then,2yr ago, infrequent short trips into my near town and taxi home, just narrows your life.
l buy newspapers havent the motivation or concentration to read them, keyboard fatigue, fallen asleep onto keyboard, and yes can talk gibberish when bad. Nausea can come on just rhough being tired, more so if out, and thats on a reasonable day, bad ones l dont go out, love my dogs but dont get walked as much as they should, But l dont know if its cfs, speak to doc, Sorry for those that have severe, and do think its easy for docs public more so to dismiss it as phycalogical, lve known depression anxiety in the past, had proz, and cog therapy, which l think good for phycalogical probs, not this, same way l had intersticial cystitus put as phycalogical, hypacondria, neurotic, till scope and diagnosis, scuse ramble, best wishes

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auntyl said on 01 December 2012

l was of normal health, energy, good stamina, With the birth of my second child by planned section l was ill and in severe pain immediately afterwards, catherter in,nurses dismissed my symptoms as post op, but l,d not felt like that after lst section, 4days later confirmed bacterial cystitus, weeks later needed meds to expel clots, From then on l had frequent ill health severe pain, tests and meds often diagnosed bacteria thrush no cause. That took all of 12yrs, intersticial cystitus, a chronic inflammation of the bladder, no bacteria seen in samples, but scope shows blood and scarring on bladder lining, no known cause, mabye auto immune, allergy, so anti inlfammatories, histamine receptors, nerve end calmers, ove a few year symptoms improved re pain, frequency, generaly health.But after years of it being settled, l find my days of fatigue increasing, with less energy stamina poor, l had experienced days of this with ic flare ups, but in recent times the fatigue is more frequent, have a reasonable energy day next one l,m floored, feels like flu, off it, sore throat, achy, cold,
poor concentration memory- foggy, restless sleep, yet fight falling asleep day time, can nod off 3-4 times 30min, intolerance to loud noise, even bad smells, being retired work not a problem, dont think l could now, just doing basic home work as much as l can manage, deep cleaning, decorating, cant do it now, try to have a social life, lack of energy and motivation make it hard going. l also have allergic rhinitus, asthma, eczma, ibs, and notice in last year or so all have got worse, thinking is it my age, 63, are allergens increasing, as speak to many who allergy and immune probs have got worse this last year, gp,s seem to agree or are humouring me. But no diagnosis, easy to deny when many not the same, but weve all different levels of immunity, the older and vunerable more affected. Yet l tick most of cf symptoms, never thought of it. CFS-immune probs-connected,puzzled, see doc???

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bethanne1 said on 30 June 2012

I have not been diagnosed with me/cfs but after reading and researching I feel it may apply, for most of my adult life I have had fatigue and can sleep for great britain, it has been known for me to lose 48hrs of my life through sleep and still I feel exhausted, i've suffered severe dizzy spells, my muscles and bones ache, I have been diagnosed with depression and put on medication which doesnt help, they have told me Im hypersomnolent, get vicious headaches, years ago I could clean the house decorate chase the kids around and work now just getting through each day is a task, I get brain fog a lot of the time and find it hard to concentrate, many times I have hoped not to wake up in the morning it feels so bad. I dont want to say to my doctor as I know how they can react and am just not up to battling them. I dont feel as if I have any emotions and feel I couldnt care less about most things.

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User686325 said on 14 June 2012

2 years ago I was a physically fit 53 year old, rowing competitively, cycling and all round active Then, first Saturday in June 2010, late morning, I was at home, in the sunshine with my family when it was like a bomb went off inside me. I thought I had done my back in. Within just a few minutes, I couldn't get myself upright, and ended up on all fours on the carpet. Over the next few days I gradually got myself upright but the pain had spread to my main muscles and joints.
I eventually went to my doctor's surgery, but didn't get to see my own doctor. The other doc took a blood sample which subsequently was clear (but I didn't know what the test was for). Still thinking I had pulled some muscles, I went to a physiotherapist and osteopath. After 3 weeks of being pulled around, pummelled and twisted, they told me that something was actually wrong because my body had completely failed to respond. They wrote a comprehensive letter to my doctor setting out what had happened to me, with all the symptoms that I was displaying. I then got to see my own doctor and he was excellent. He carried out a whole battery of blood tests which all gave me a clean bill of health. Then he said, diagnosis by elimination, I believe you have post viral fatigue syndrome. He went on to explain it to me, showed me his screen with all my results on it and gave me some idea of what to expect. It all made sense to my family who had been saying that I was ill! I took prescribed anti-inflammatories for 6 months and then weaned myself off them as they were masking the symptoms and I couldn't assess how I was doing. Two years later, I am much improved and am functioning much better. I no longer collapse onto the sofa and sleep and the brain fog has mostly gone. I am still very stiff and my limbs/shoulders can still be very painful, especially if I have some good days and overdo things, when payback strikes me!

I feel I am now doing OK!

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living in the present said on 12 June 2012

Bravo!! You all have lots of grit in the UK. I live in the US and there isn't any kind of protocol or real help here for CFS or any of the others that often accompany CFS; like Fibromyalgia. It's frustrating and I'm tired of it all, but I refuse to give up. Have just signed up for one-on-one yoga I'd never heard about. It's called Therapeutic Yoga and my one hour sessions will be with a licensed/certified yoga therapist in the US. It's not like traditional Yoga which is basically exercise for healthy people in the US. Therapeutic yoga is a Mind/Body/Spirit practice that won't cure me but I believe it will help a lot. This therapist has impressive credentials and has helped a lot of people. I hope I'll be one of those. You're all correct; we must take care of ourselves because doctors sure don't. They know less about CFS and FM than I do; mainly because I've lived with it for 7 years and read everything available and they haven't. I've had lots of physical trauma and illness in my life and CFS is the result of years of trauma, surgeries and, (the last straw 7 years ago), nerve damage to my left arm/hand. By the way; I'm a retired Registered Nurse with 35 years experience. Thank you to all who posted here. I'll come back often. You give me courage.

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Bank123 said on 15 May 2012

I was diagnosed with ME in 2007 aged 25. I had been healthy and fit years prior to that, playing regular rugby and long distance running. In 2004 I started working in the investment banking industry and began working long hours. The onset occurred when I was unable to recover from a viral infection and the symptoms just lasted forever. Constant haze, sore lymph nodes, tingling sensation, head aches, sore throat and constant fatigue.

The hardest thing for me was when would it all end. I was fortunate to have no dependants, and although the banking industry is far from accepting ME as a disease, I considered leaving at this time.

A consultants at Westminster gave me the best advice ever. Before I had ME, I never drank coffee and stayed away from caffeine. He recommend I start drinking it to help get me through the days. At first it was tough as I had highs and lows. I used weekends to rest and purposely stopped drinking it so not to become dependant on it.

I can honestly say that this small change helped me get through the hard times (1.5 years). I am blessed that I now live a normal lifestyle but am very mindful to listen to my body. I worry that if it came back I would be very annoyed with myself given I have more control than it did before as I was helpless.

Not sure if people in similar scenarios can relate?

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chellb_322 said on 13 May 2012

I just want to say thank you to those that have posted comments, because for the first time I feel that my Father and I are not alone.

For as long as I can remember I have experienced over whelming tiredness and my Father has experienced severe headaches. As I have got older, I began experiencing other things, going to the doctors about each one and never really getting to the bottom of what was wrong with us, as I have realised that my Father experiences many of the same symptoms.

After reading alot of the information on CFS, and reading what other people have experienced, I now realise all the symptoms are related - and what they are related to.

I have not yet gone to the doctors about this, and after reading some of your experiences I am not sure it would be worth it, but at least I can start to look for something to help (thanks Rachygoth 24).

I would be very interested in hearing how others have managed their condition - and whether you think it would be worth going to the doctors at all?

I do feel that the suggestion that it is psychological is quite insulting. I first started getting symptoms at 16 and my Father at 11 - are they really suggesting that it is all in our heads, or that we are the cause?

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Ola09 said on 05 May 2012

I'm 36. I used to be very active and independent. But now I feel always tired, and have done for good few years. I've been told it's "maternal exhaustion", stress, depression, you name it, I've had meds for depression and anxiety but they only made me worse. I have 3 small children, and on top of the constant fatigue I've developed major anxiety with agoraphobia. I've been going to the doctors for ages asking for help, but it was only this week that a lovely lady GP suggested that although many symptoms do fit anxiety, some don't, and they actually fit chronic fatigue more, so she is sending me to a chronic fatigue clinic - I do hope that helps. I didn't know such clinic existed, but apparently this one is new, and they are helping people quite a lot. So if you suffer from this, just ask your GP to be referred - if you ask I think they have to do that. Good luck everyone.

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lydia1964 said on 19 April 2012

my son who is 18 has had me (cfs) for at least 3 years, we have battled with doctors who simply say pace yourself etc etc. in the end i researched through websites and found an nhs clinic who deal specifically with me. my doctors said "find somewhere to be referred to and I will refer you"so i did.. Im absolutely disgusted with their attitude, how much does an average gp earn 150k? and they cant be bothered to help. Anyway, finally two weeks ago we had the appointment with the clinic we saw a fantastic, interested doctor who made suggestion as to what can help. melatonin for the sleep disturbance, low g i diet, increasing exercise (by this i mean walking a few extra steps each day, week month) and cbt to try and change the way you deal with me. Further advice from the natural health area have been massage to remove toxins from the body. I hope this may help anyone out there trapped in the world of doctors who on the whole don't care.

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Rachygoth24 said on 17 April 2012

Charlo2: I completly feel for you there...I have been going through the same thing for 4 years so far... At first they told me it was depression and gave me antidepressants, then they decided it was anxiety and gave me beta blockers, then decided it was polycistic ovarys even though my bloods were normal. I'm always so tired and in pain. I have a friend with fibro and she, along with members of my family, think I have M.E./CFS as i have most of the symptoms!...
Does anyone know how to get their doctors to listen cos im at my wits end with this. Its costing me financially and socially. I go to work, I come home and rest...that is all my life consists of and I'm 24 :(
If anyone can offer some advice I would be really greatful!!

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Charlo2 said on 02 April 2012

i have all the symptoms listed above and have had them for 5 years or more i've been to 4 different doctors who all responded with "its just life and things will get better" only they haven't and i'm loosing the will with GP's all together does anyone have any thoughts on how i get my GP to listen and take me seriously ? my life is on hold because i can not function normally on a daily basis which has now lead to my doctor telling me "im just a bit depressed " gave me tablets and sent me home he also told me i need to lose weight which i had done in the past but now find hard because my body just will not take the pase .

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blackjacktar said on 29 March 2012

I've had cfs since 2005 I didn't get a diagnosis until 2011 my symtoms can be quite severe at times, my g.p. has agreed to support my request to try l.d.n. (low dose naltrexone). Has anyone had any positive outcomes using l.d.n. to treat cfs.

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misslili86 said on 26 January 2012

Hello I am hoping I can get some advice... I am 25 and have been suffering from quite a few of these symptoms for around two years... I feel at wits end with the doctors after a number of blood tests and appointments. The last appointment I attended and mentioned CFS to the doctor as I researched it online, the doc told me it does not exist any more as it was just another word for fatigue!! I was really disgusted by that comment as I know it is far from true having looked it up. What I would like to know is how do I get the docs to take me seriously and help me to find out if this is what I have... Thank you

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Arthur Brede said on 18 January 2012

Just got back from a consultation with a doctor I trust (one of the very few) and he suggested I check out ME/CFS and see if it fits. I live in the Czech Republic these days, but I'm British, and I'm shocked by the level of ignorance and frustration I've found in the last hour from the UK net. I was 18 months into a no-drinking, strict-dieting, 6-hours-a-week aerobic response to a diabetes 2 diagnosis, doing well, when what the family came to call 'The Lurgi' struck. In the face of the 'mind-fog' I found I could no longer think straight, I couldn't keyboard (after 40 years of very fast touch-typing), I had no energy and all exercise hurt like hell. And the worst was, and is, that in the spells when I'm lurgi-free I get a taste of what life could be (was) like in a world where I could drive at night, type as fast as I could think, raise all hell in the classroom (I'm a teacher, once famous for energy and life, now just serving time and hoping to make it to retirement before I croak - thank gods for ace students). From my point of view, using a bit of sport as an example of a trigger almost brings on tears - I wish I could manage just quarter of an hour a day on a the static bike (that used to be the warm-up for an hour's session). If can bring myself to try, I hurt for 24 hours afterwards. My weight's off the clock again and depression filters the whole damn world. Yeah, bring on the jokes, tell me to pull myself together, let's all YouTube Guy Clarke's 'Doctor, Dear Doctor' and feel guilty.

I'm writing this because (1) At least I have a diagnosis; (2) I want to tell all the real sufferers out that that is is real. I've got a feeling that it's like migraine - everyone who ever had a bad headache calls it migraine, while the real sufferers listen aghast to stories of how it can be weathered by 'strong people' and (3) I'll be back here and semi-blogging if the Czechs have better ways of cracking it than the Brits (they often do in matters medical). Strength, all!

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Rusty101 said on 04 December 2011

I have to say I have a wonderful GP who suspected CFS from the start but went through the whole range of tests before giving me the list of symptoms and asking if I felt that fit my problems. She gave me a fortnight ot think about it then asked if I was prepared to accept that diagnosis or if I wanted her to refer me to a consultant for more intensive tests.

I agree with nobodysfool who says that fatigue is the main problem. I find that the "brain fog" is frustrating when you can't hink of the words you want to use and when your mind is too tired to make conversation. As fo exercise, I sometimes find it difficult to go upstairs to use the loo. A shower leaves me wiped out mentally and physically and the pain keeps me awake even when I'm exhausted.

The new legislation of stopping sleeping tablets and Diazepam is making things mor difficult as they at least relax you enough to be able to think more clearly.

I wish people (and the medical profession) would realise that CFS is like having constant flu symptoms and it's very frustrating not to be able to do everyday things that most people take for granted.

I used to be a busy, active person who had a job, kept the house clean and played sports now I'm lucky if I get the dusting done.

Please wake up and realise that this is a severely debilitating illness which needs its profile raised so I don't have to listen to comments such as "They call it ME because it's all me, me, me!" This was from a nurse!

Do people really think that individuals with CFS want to feel like this? If it was a problem that people could see there would be more understanding and empathy. Thank God for my GP who really does understand and listen.

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nobodysfool said on 21 July 2011

It is disgraceful that the NHS continues to pedal the utter disrespectful nonsense that everyone with ME/CFS is capable of doing normal everyday activities. It is not true and is the cause of much harm and discrimmination.

Thousands of sufferers commit suicide ever year and many die directly from neglect, because of this kind of false information and it needs to be stopped.

To describe fatigue as the "main symptom" is very misleading it would be much better to describe it as a universal symptom. Your description also implies that severe fatigue is not present before exercise when for tens of thousands of sufferers extreme fatigue is always present.

To use playing a game of sport, as a typical example of an activity ME/CFS might partake in adds to the harmful misrepresentation of how serious this condition is for most sufferers. Many of us can only dream of being able to walk to the front door.

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