Myalgic Encephalopathy (ME) also known as Chronic Fatigue Syndrome (CFS) affects an estimated 250,000 people in the UK. It’s thought that 60-70% of sufferers are female, and are normally aged between their early 20s and 40s.
Characteristic symptoms of ME include an intense physical and mental exhaustion which can be brought on from the simplest tasks such as using a computer or conversation.
Other symptoms include muscle pain or twitching, intolerance to exercise, cognitive dysfunction such as clumsiness, and sensitivity to light.
ME can weaken the immune system meaning that sufferers are left prone to infections. As a result, swollen glands and headaches are common.
Due to the long term nature of the condition individuals are often subject to depression, frustration and mood swings.
Despite the chronic exhaustion, ME sufferers commonly find falling asleep a huge task- despite being in serious need for it. Even when they do manage to rest, individuals are left lethargic and inadequately energised.
While some sufferers only experience mild symptoms, in the majority of cases they are so severe that sufferers’ lives are totally disrupted.
The effects of these symptoms can be devastating, forcing sufferers to give up work and social activities completely and leaving them housebound for months or even years in some cases. It doesn’t help that it is still not known exactly what causes the condition, although many factors have been linked to triggering it. These include a poor diet with a heavy reliance on processed foods, prolonged stress, hypersensitivity to vaccinations, artificial food additives, smoking, alcohol, viral infections and repeat courses of antibiotics.
How debilitated people are from ME can change from person to person and from day to day.
Many students around the UK are affected by ME and find leading a typical student life very difficult. As well as having to be careful about overloading themselves with work and their social lives, ME sufferers find the lack of general knowledge of the condition intensely frustrating.
Emma has ME and graduated last year. “One of the difficulties of having M.E. is that often you look okay on the outside but you’re actually feeling awful on the inside, so it’s hard for others to realise you’re not well.”
Predictable and unpredictable relapses are common which can mean that students find it difficult to juggle deadlines especially as relapses can often be triggered by stress.
A small amount of people with the condition manage to return to completely normal health, but this can take a long time to achieve. Most people with ME are affected at fluctuating levels with good and bad periods. Some are severely debilitated long term and can be bed ridden for years needing a lot of support. Continued deterioration is unusual but does happen.
In these cases it is important to rule out any other illnesses that ME could be confused with. Younger people, especially children, seem to recover better than older people.
The diagnosis of ME can pose a problem as ME symptoms are similar to those present in a number of other medical conditions. In addition, there are no research findings which can confirm the diagnosis. As a result the diagnosis of the condition is normally made via a process of elimination (the exclusion of other conditions).
The illness has an individual element – an individual’s particular version is unlikely to be the same as anyone else’s. As a result, one may find that a treatment which relieves particular symptoms for someone else may not do the same for another – indeed it could even make the situation much worse. On the other hand, a treatment which someone else found to be of little use could be useful to another sufferer.
There is no cure for ME, so treatment focuses on the symptoms. The effectiveness of treatments depends on how ME affects you. Early diagnosis, balancing rest with activity, medication to control certain symptoms and self-help measures can all help.
Simply diagnosing ME and giving specialist advice about how to deal with it can help.
Cognitive Behavioural Therapy (CBT) aims to change the way one may think, behave and feel. By talking to a professional, it is possible to identify the thoughts and feelings that are causing certain behaviours. CBT helps to manage the emotional impact of the symptoms. For some people, it is one of the most effective treatments for ME.
Antidepressants are occasionally prescribed and can be useful for people who are suffering with depression together with ME.
Over-the-counter painkillers can help to ease muscle and joint pain and headaches. Stronger painkillers can also be prescribed by the GP, although they should only be for short-term use.
Another option is that of Graded Exercise Therapy (GET) which involves a structured activity management programme that aims for a gradual increase in aerobic exercise, such as swimming or walking. Patients tailor their exercise programme adapted to their own physical capacity.
GET should only be carried out by a trained specialist with experience in ME. Patients are advised not to exceed the exercise duration or intensity they have been given.
Randomised controlled trials evaluating GET found it had an overall beneficial effect on fatigue. However, studies have shown higher drop-out rates than for CBT.
Many people claim complementary and alternative therapies to be the way forward in the treatment of ME. The evidence however is lacking, and thus their use is not advised, even though some people, who use these therapies for symptom control, claim that they are helpful.
ME is a hugely debilitating condition. Through greater awareness of the disorder, sufferers and non-sufferers alike may be able to understand the nature and consequences of suffering with the condition. If you are concerned, or would like further information then contact your GP. Support is available from Action for ME (www. afme.org.uk).
1. John
The comments on CBT/GET in this article are fairly ill-informed.
CBT when used for ME is not the same as described in this article, which describe how it is used in other chronic conditions, but rather more akin to attempted brainwashing, ie the changing of ‘dysfunctional cognitions’ and/or ‘abnormal illness beliefs’, with the principle ‘abnormal illness belief’ in question actually being the patient’s belief that they suffer from any disease to begin with instead of the presumed behavorial illness the CBT therapist believes them to be.(1) It is not used to help a patient cope with their illness, but rather in an attempt to convince them they do not suffer from any illness at all!
In an interview on the subject, Dr. Charles Shepard, Medical Advisor to the ME Association, had the following to say- “I think there’s a certain degree of empire building going on here amongst the psychiatric and psychological professions. CBT seems to be sort of moving into all kinds of illnesses.
ATKINSON But it is used for physical things.
SHEPHERD It is used for physical things and this is perhaps the argument that NICE would make – that it’s used sometimes with the management of cancer and serious physical illnesses like Multiple Sclerosis. But I think this argument is disingenuous, it’s not a primary form of treatment there as is being recommended for people with ME CFS and if you went along to a cancer specialist and were just offered CBT as the primary form of treatment you’d be quite horrified, in fact you’d probably think you were being treated with medical negligence.”(2)
The notion of CBT being used to treat ‘abnormal illness beliefs’ is also expressed by Gijs Bleijenberg, who has authored several different papers on the subject. In a letter to The Lancet, Prof. Bleijenberg stated that CBT was indeed meant to be ‘curative’, with the final step of this ‘cure’ consisting of the patient simply ceasing to ‘label’ themselves as suffering from CFS!(3)
This extremely prejudiced, ill informed and harmful view goes in direct contrast to the numerous papers published on the subject of abnormal responses to exercise in CFS patients, with responses ranging anywhere from decreased blood flow to the brain, increased complement activation, altered muscle membrane excitibility, increased oxidative stress, immune activation, etc. and can very well actually cause harm to the patient.(4)
This is substantiated numerous times over by the results of no less than ten different surveys of patient groups conducted in several countries over many years, with CBT/GET being the two treatments most often cited to be either ineffective or to actually make patients worse.(5) Of course these common findings of exercise studies in ME-CFS are ignored by CBT researchers.
These problems are compounded by the exceedingly poor methodologies used by CBT researchers in their studies on CFS in addition to their omitting large portions of the biomedical ME-CFS literature in their papers. Not one single CBT study has included objective measurements of improvement in their results, such as the use of actometers.
In fact, one study authored by Judith Prins along with Prof. Bleijenberg did use actometers in an attempt to measure patient’s activity levels but when the results came back and showed no increase in the activity levels of the treatment group vs. controls, the results were simply omitted from the final paper and the study declared a sucess. It was only several years later in a government report of the Netherlands that this data came to light(6), which is a textbook example of selective reporting of one’s findings. The fact that results like these are not included in finished papers along with CBT researchers’ common practice of excluding the high drop out rates you mention(which are widely considered to be a proxy measure of harm) from the final calculations results in considerable harm being done to patients and is a subject which needs to be more closely examined by legitimate researchers, the general public, and hopefully reporters such as yourselves.
1. http://www.bmj.com/cgi/content/full/330/7494/790
2. http://www.bbc.co.uk/radio4/youandyours/transcripts_2007_45_wed_03.shtml
3. http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(02)08577-X/fulltext
4. http://www.ncbi.nlm.nih.gov/pubmed/19855350?ordinalpos=2&;itool=Email.EmailReport.Pubmed_ReportSelector.Pubmed_RVDocSum
5. http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0906E&;L=CO-CURE&P=R427&I=-3&X=67137F0978ED271BAE&Y
6. Van Essen, M and de Winter, LJM. Cognitieve gedragstherapie by het vermoeidheidssyndroom (cognitive behaviour therapy for chronic fatigue syndrome). Report from the College voor Zorgverzekeringen. Amstelveen: Holland. June 27th, 2002. Bijlage B. Table 2. p. 57.
2. Jamie
I keep misreading the headline here as ‘Magical encephalopathy’.
3. Alex Barton
If you want to hear about methods of recovery and people who have recovered from CFS/ME a new book “RECOVERY FROM CFS – 50 Personal Stories” is now available from Amazon. 50 stories of recovery from men, women and children from 6 different countries diagnosed with CFS, who have regained good health and returned to a normal life. They describe how they recovered and recommend therapies, books, websites and some even give contact details for those needing support. A positive and uplifting book full of resources for anyone with CFS or their carers. FREE stories from the book available from www.alexbarton.co.uk
4. Tom K
Just thought I’d write and say I was impressed by John’s post (post #1).
The correct link for reference 5 is: http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0906E&;L=CO-CURE&P=R427&I=-3&m=18611 or, if that doesn’t work, try a short link that shouldn’t be affected by any “break-up”: http://tinyurl.com/ydqncyx