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ME/CFS South Australia Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.


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Recovery from CFS – another view

Tuesday 1 July 2008

Recovery from CFSWe’ve had a message from Society member Anne Kennedy expressing her concern about the contents of Alexandra Barton’s book, Recovery from CFS – 50 personal stories [original news item here].

Anne said in her message: “The book extols all sorts of weird and wonderful approaches to ME/CFS. I believe that it is essential that a responsible ME/CFS society should present the other side of the argument to the members/users of the website. John Greensmith has done a good job of presenting the other side of the argument in a letter he wrote on the topic.”

Dr John Greensmith in his response points out the dangers of believing that CFS can be overcome by diet, willpower or determination.

Here is Dr John Greensmith’s response:

There is no doubt that improving your diet and being determined to recover from any illness is positive advice (PS Alexandra Barton, The Spark, Issue 53, May-Aug 2008) but for people who have M.E. (Myalgic Encephalomyelitis) it is most often not sufficient to bring about a cure.

Paradoxically, her advice may be very disappointing for M.E. sufferers because, when having tried everything that Alexandra suggests - and from which she got better - but it hasn't worked for them, they are left to conclude, either that they haven't followed it properly, or that they really are incurable, which may not, in reality, be the case because, first, they may not have the same illness that Alexandra (and the other cases in her book "Recovery from CFS - 50 Personal Stories") had and secondly, they may not be incurable if biomedical research shows us the cause of M.E. and leads us to a cure. Sadly, this proper scientific route is not being properly publicly funded.

We need to be much more precise about diagnostic terminology. Although they are commonly taken to be equivalent, M.E. is neither synonymous with Chronic Fatigue Syndrome (CFS), nor is it an illness to be bundled with others under this catch-all umbrella term, which is so indiscriminate a label that there is not an illness to which it might not be applied. Whatever is the cause of the ubiquitous and omnipresent overwhelming lassitude from which people with M.E. suffer, it is not fatigue as we normally understand it. It does not come on, as tiredness usually does, after physical or mental exertion and it does not dissipate with any amount of sleep. In addition, M.E. sufferers have a range of symptoms (including muscle pain, swollen glands, cognitive dysfunction, slow recovery after minuscule effort and dizziness), which 'fatigue' alone does not cover. M.E. sufferers do not have chronic fatigue.

People with illnesses, in which chronic fatigue may be a consequential symptom and from which they may recover in time, do not have M.E. They are not the same and should not be treated as such.

Most people with M.E. are not depressed. Sure, they are, quite understandably, fed up with being unable to work, or go to school, with the decline in their standard of living on benefits, social isolation and fractured relationships, on top of the physically disabling symptoms of M.E. but this is not the same as clinical depression, which may occur for no such obvious reasons and these states, too, should not be treated in the same way. There is no evidence of any lasting benefit, without relapse, for people with M.E. from one of the recommended treatments, Cognitive Behaviour Therapy (CBT) and the other Graded Exercise Treatment (GET) actually makes more M.E. sufferers worse after it, some irrecoverably so. You can't talk your way out of M.E.

Yes, M.E, sufferers should expect some benefit from improving their diet and adopting a positive attitude but they should not expect a cure, or be led to believe that other M.E. sufferers have been cured these ways.

Yours sincerely
Dr John H Greensmith
ME Free For All. org



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