Chronic fatigue syndrome - Treatment 

Treating chronic fatigue syndrome 

Complementary therapies

There is not enough evidence that complementary therapies are effective treatments for CFS. Therefore, the NHS does not advise their use. However, some people use these therapies to control their symptoms, and find them helpful.

Flu vaccination

Under the guidelines drawn up by the Department of Health people living with CFS are entitled to the seasonal flu vaccine as they are defined as living with a serious long-term condition.

Though there may be both pros and cons associated with vaccination. Catching the flu when you are already experiencing symptoms such as fatigue can be very debilitating so vaccination can protect against that.

On the other hand some people with CFS who received a vaccine reported that the vaccine appeared to make the symptoms of CFS more severe.

In a small survey carried out by the ME Association, just under half of people said vaccination made no difference to their symptoms, a fifth said it made it slightly worse and a quarter said it made it much worse. While a small minority of people surveyed (6%) said vaccination appeared to make their symptoms better.

There is no cure for chronic fatigue syndrome (CFS) but treatments can help relieve the symptoms.

The effectiveness of treatments depends on how CFS affects you. Early diagnosis, balancing rest with activity, medication to control certain symptoms and self-help measures can all help (see below).

Simply diagnosing CFS and receiving specialist advice about how to deal with it can help.

CFS may last for years. However, many people recover or at least adjust their lifestyle to improve their symptoms.

Treatment programme

The National Institute for Health and Clinical Excellence (NICE) advises that an individual programme of treatment should be offered to you with the aims of:

  • maintaining and if possible extending your emotional and physical abilities
  • managing the physical and emotional effects of your symptoms 

You may be offered the treatments explained below, but remember: what works for one person may not work for you.

The benefits and risks of each treatment should be explained to you, as some treatments could make your symptoms worse. Both you and the healthcare professional treating you will decide on your treatment programme.

If your symptoms continue to get worse for several days after trying a certain treatment, or if your symptoms are particularly severe, contact the healthcare professional who is treating you. It may be necessary to amend your treatment programme.

Cognitive behavioural therapy

Cognitive behavioural therapy (CBT) is a type of therapy that aims to change the way that you think, feel and behave. CBT helps you realise that your problems are often created by you. It is not the situation itself that is making you unhappy but how you think about it and react to it.

Through talking to a professional therapist, you identify the thoughts and feelings that are causing certain behaviours. Your therapist will help you find ways to change your thought patterns and your behaviour so that you can cope better with the emotional impact of your symptoms.

Ideally, your CBT therapist will have experience in dealing with CFS and treatment will be offered on a one-to-one basis. The treatment will be tailored to your needs and may include some of the following:

  • helping you to accept your diagnosis
  • challenging any thoughts that could prevent your symptoms improving
  • trying to increase your sense of control over your symptoms

See the Health A-Z topic about CBT for more information about this type of treatment.

Graded exercise therapy

Graded exercise therapy (GET) is a structured exercise programme that aims to gradually increase how long you can carry out a physical activity. This will usually involve aerobic exercise (exercise that raises your heart rate) such as swimming or walking. You will have your own exercise programme adapted to your own physical capabilities.

GET should only be carried out by a trained specialist with experience in CFS and, if possible, should be offered on a one-to-one basis. After finding your "baseline" in the exercise (what you can comfortably do already) you will gradually increase:

  • the length of time that you do the exercise
  • the exercise intensity

As part of your exercise programme, you and your therapist will set goals, such as being able to walk to the shops or carry out some gardening. It may take months for you to achieve these goals but it is very important that you do not to exceed the exercise duration and intensity that has been set for you.

Activity management

Activity management is another aspect of your treatment programme that involves setting individual goals and gradually increasing your activity levels. You may be asked to keep a diary of your current activity and rest periods to establish your baseline. Activities can then be gradually increased in a way that you find manageable.

Medication

Your treatment may also involve taking medication, although this will depend on your symptoms. For information about your medication, see the patient information leaflet that comes with it.

Over-the-counter painkillers can help to ease any muscle and joint pain and headaches you may have. Stronger painkillers can also be prescribed by your GP, although they should only be used on a short-term basis.

If you have chronic (long-term) pain, you may be referred to a pain management clinic. There are about 300 of these across the UK, mostly located in hospitals.

Antidepressants can be useful for people with CFS who are in pain or having trouble sleeping. Amitriptyline is a low-dose tricyclic antidepressant that may be prescribed. Amitriptyline is not suitable for everyone – for example, it may not be suitable if you have a history of heart problems. It can also cause side effects such as:

  • a dry mouth
  • blurred vision
  • dizziness
  • drowsiness

Lifestyle advice

As well as these treatments you may find the lifestyle advice below helpful.

Pacing

Pacing is an important way of controlling CFS symptoms. It involves balancing periods of activity with periods of rest.

Pacing means not overdoing it or pushing yourself beyond your limits. If you do, it could slow down your progress in the long-term. Over time, you can gradually increase your periods of activity, while making sure they are balanced with periods of rest.

Learning how to make the most of your energy helps increase the amount that you can do. However, you may need to arrange your daily and weekly activities around when you can be active and when you will need to rest.

If you pace your activities at a level that is right for you, rather than rushing to do as much as possible in a short space of time, you may be able to make steady progress.

Other self-help techniques

The following recommendations may also help:

  • Avoid stressful situations.
  • Avoid alcohol, caffeine, sugar and sweeteners.
  • Avoid other food and drink that you are sensitive to.
  • Eat small, regular meals.
  • Spend time relaxing.
  • show glossary terms
Antidepressants
Antidepressant medicine is used to treat depression. Examples include fluoxetine and paroxetine.
Depression
Depression is when you have long-lasting feelings of extreme sadness, despair or inadequacy.

Last reviewed: 13/07/2011

Next review due: 13/07/2013

Comments

10 Comments

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Comments are personal views. Any information they give has not been checked and may not be accurate.

Ian Solley said on 01 May 2012

I was diagnosed with "Post Viral Fatigue" in 1989 by my GP after University. I was also, after all NHS tests failed to find anything wrong with me, written off as psychosomatic. CFS is not an illness generated by the mind that inflicts physical symptoms. It is a physical illness that inflicts a mental toll on the mind of the sufferer.

It wasn't until many wasted years later in 2000 when I saw an ex GP on Harley St. that I was found to have very high levels of the heavy metals: lead and elevated levels of mercury. The lead result was quite literally off the (top of the) chart. My first heavy metals blood test in 1990 found low and "safe" levels of lead, and heavy metals were not thought to be a factor in my illness (I was bed ridden for most of the first year I got ill).

Heavy metals can be very hard to detect. They will rarely show on tests - if they do it is typical that any result will only show the tip of the iceberg as they are not readily measurable or "freely floating" in the blood (unless poisoning is acute). The reason for this is that they typically become sequestered in the bodies fat cells.

The secondary effect of heavy metals and/or chemical toxicity is the pathogen (parasites/bad bacteria/viral/yeast) overload these toxins cause - typically people chase these "symptoms" whilst ignoring the root issue.

Since going on a heavy metals detox and chelating these metals my health improved to the point where I consider myself over the illness and I wrote a book about my experiences and how I detoxed and what I did to get past the rigid type of thinking by doctors, who have no appreciation or comprehension of environmental toxicity.

Whilst I appreciate the effort the NHS has gone to, to help I find it very disappointing that absolutely nothing has changed in 20 years and environmental illness is not even on the map.

Good Luck
Ian M Solley

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Tall Bird said on 24 March 2012

Being an M.E. sufferer I am offended by some of the NHS content on these pages. The implication that Cognitive Behavioural Therapy (CBT) is a curative therapy for the majority of M.E. patients is not based on truly observable scientific evidence. It implies of course that there is an underlying observable psychological pathology. For most M.E. patients this is not the case and is nonsense. That is not to say of course that some patients with M.E. won't experience some benefit from CBT. For too long the M.E. agenda has been dictated to by a small group of psychiatrists who influence the policy and thinking on M.E. The NHS, Medical Research Council and government should collectively hang their heads in shame for continuing to abandon the welfare of M.E. patients. We have a right like all other patient groups to expect swift diagnosis and a range of objective, effective treatment options. For too long valid biomedical research has been ignored and funding has been siphoned in a psychiatric/psychological direction. Little wonder M.E. patients are forgotten and abandoned. Malcom Hooper's written complaint to The Lancet about the PACE trials makes illuminating reading and should be read by all newly diagnosed patients with "CFS" if you want a more balanced view about CFS treatment. The NHS NICE guidelines need to be re-written and they need to revert to the title M.E. (see Dr Byron Hyde's writings on CFS & M.E.). They also need to initiate the immediate use of the New M.E. International Consensus Criteria (2011) so that M.E. sufferers can get a swift diagnosis. We also need an effective suite of interventions & treatment. The psychiatric school has had its day. They have sold us, the NHS and MRC down the river and wasted valuable time.

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morphix said on 25 January 2012

I think I have CFS I have all the symptoms but have not been able to get a diagnosis as I also have social anxiety and speaking to a Dr is difficult. One thing which has helped me is Kratom, a natural plant product. It relieves many of the symptoms, boosts energy levels and acts like an anti-depressant on low mood.

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Rosiecat said on 04 December 2011

Hi, I was diagnosed with PVFS 11 years ago when I was 41 years old. Made some sort of recovery and have suffered two relapses in this condition, had to leave work 6 months ago, still very unwell, perhaps coupled with menopause and low body weight, very low blood pressure, the list is endless.
my main issue is the lack of recognition within my GP surgery, I am unable to consult any of my GP's due to the feeling that I am not being taken seriously. Spend many days at home, only able to go for shopping once every two weeks. I live alone with my cat and feel that, I have and can only expect now that I must help myself, I am taking mineral therapy and multivitamins at the moment.
Looking forward to getting my life back, I do understand this will take time, as I have been unwell for 11 years now.
I certainly do not feel depressed within myself, although my thoughts and feelings of sheer frustration with the lack of support from the NHS is what upsets me most..

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JeniL said on 24 November 2011

The reason Pacing and the Other self-help techniques you mentioned here are helpful with CFS is that they are treatment protocols for Adrenal Fatigue. CBT and GET do not really help CFF from my experience. Treatment protocol that helps the immune system, Adrenals and calming the Nervous System are best, these can include Nutrition, Lifestyle changes specific to enhancing immunity, Adrenal function and calming the Nervous System, EFT, NLP, TC Accupunture, gentle/sitting Smile Tai Chi and simple yoga stretches, Mindfulness Meditation.

Interestingly this section is the same advice for people with Adrenal Fatigue:

The following recommendations may also help:

Avoid stressful situations.
Avoid alcohol, caffeine, sugar and sweeteners.
Avoid other food and drink that you are sensitive to.
Eat small, regular meals.
Spend time relaxing.

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JeniL said on 24 November 2011

Came here to see if the NHS has caught up with the latest research & developing more effective treatments that work better, but I see not. The thinking & treatment protocol seems no different from 10 years ago, it's just more accessible.

"CBT helps you realise that your problems are often created by you." Really not a helpful attitude NHS, no wonder the treatments are not effective! If this is the case, why does CBT not help many people with CFS & why doesn't it cure CFS if CFS a mental problem? I'm sorry NHS, but CBT and GET do nothing to help a body overwhelmed with virus(s). Multiple Viruses caused my body to be in this state & go into a flight or fight response, affecting adrenals & causing 'CFS'. The only treatment protocols that have helped me have targeted the Immune System, Adrenals & calming the Nervous System (EFT based NLP helps calm Nervous System Response & helps the Adrenals as it targets physical mind-body response, rather than CBT 'Talking therapy' which does not seem to do much over placebo effect). Had Glandular fever when younger & believe as it stays in the body it has contributed to my immune system being overwhelmed by a later unknown virus or a combination of viruses/immunisations/chemical pollution/stress. Every standard blood test I've had consistently shown high White Blood Count, which shows my body is fighting a VIRUS. GPs seem to just ignore this & say everything is okay. Yes I don't have cancer or liver disease & I'm thankful for that, but a prolonged viral infection lasting 12 years is not fun or good for the body or mental health. I often hear people complain when they've had the flu and been off their feet for a couple of weeks - Imagine having permanent, fluctuating flu for 12 years and you are closer to understanding CFS. Immune & Adrenal Deficiency Syndrome, would be a more accurate name for this serious illness with Chronic Fatigue as a symptom alongside dizziness, etc.

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User336369 said on 28 September 2011

I have had ME/CFS for 5 years now and initially was housebound and very ill. My GP has been brilliant but the stigma, discrimination and blatantly abusive emphasis on 'psychiatric origin' of this illness is appalling. How dare the NHS abuse patients in this way? Especially when, like me, you have a clear aetiology and cause for the illness. The NICE guidelines need to be updated to the Canadian criteria and the illness taken seriously and given a proper name. ME/CFS is a bucket diagnosis with too much emphasis on fatigue - yes it is a significant factor (most days I feel like I have been hit by a bus) but it is NOT the only factor. To keep harping on about fatigue belittles the condition. You'd think the medical profession would have learned from the way it abused MS patients wouldn't you? It took the advent of the MRI to prove it as a valid illness and we could be decades away from a similar development for ME/CFS. Just because the test doesn't exist yet, doesn't mean the illness isn't real. The majority of chronic conditions can envoke depression etc but those patients are not just dismissed like we are. It is not 'all in our minds' or our age or anything else. Please stop insulting us and start approaching this illness properly - you could start by ditching the psychiatrists who have hijacked this condition.

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Seviyorumcok said on 24 September 2011

Thank you to jonajona34

This is what we need to do. So we can alert the public that what us cfs/me/fm sufferer's are going through on a daily bais is real! My life is just an existance and I hate people who are condescending to this condition!

They have never experienced chronic faigue or chronic pain so therefore some of the public don't seem to understand how devastating this condition is. It needs to be publicised more and the GP's need to be more understanding.

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Crazza said on 15 June 2011

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

drmyhill.co.uk


Best of luck to you all

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jonajona34 said on 29 May 2011

theres a petition above for all cfs/me sufferers in the uk,who feel that funds raised etc for this life wrecking illness can sign to, no more psychiatric research into me/cfs,and instead finding the real cause for this illness,and maybe one day a possible treatment or cure,instead of sufferers being binned into the psychiatric waste bin and left on our own to suffer in silence.you will have to copy the link and type into the web yourself,many thanks.

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Relapses

A relapse is when your symptoms get worse for some time, so you are unable to function at the level you previously were.

Relapses are a common part of CFS and can be caused by a number of factors, such as an infection or an unplanned activity. Sometimes there may not be a clear cause.

The healthcare professionals treating you can help you manage your relapse, by:

  • including more breaks with your current levels of activities
  • teaching you relaxation and breathing techniques
  • encouraging you to be optimistic about your recovery

Over time and with treatment, many people with CFS begin to show improvement.

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