Mother and daughter speak about the effects of ME (From Gazette Series)

Liza-Jane Gillsepie, as all other journalists, has been briefed that there are around 250,000 people in the UK with M.E. (Myalgic Encephalomyelitis), which is also known as Chronic Fatigue Syndrome (CFS) and she reports it (Mother and daughter from Thornbury speak about the effects of ME, Thornbury Gazette, 4 May 2010), as all journalists do, without further questioning the source of either the statistics, or the use of the word "fatigue" which is so crucial here.

Shall we do it now? No one knows how many people have M.E. because there isn't a figure for it. There is an estimate for ME/CFS of between 0.2% and 0.4% of the population, the upper limit of which is about 250,00 (aha, there it is). But, wait, how many of the people in the ME/CFS bundle have M.E.? Well, it depends on how you define M.E. There is indisputable postmortem evidence of inflammation in the spinal cord of people who have died after having M.E. to justify its name (Myalgic, means relating to the muscles; encephlo, the brain and -myelitis, inflammation of the spinal cord) but, in people living with M.E. there is, as yet, no definitive diagnostic test - such as a blood test, as for Diabetes, or a scan, as for Multiple Sclerosis; nor is there a universally agreed set of criteria for a firm diagnosis. This is largely because of an appalling lack of funding to find any such biological markers. You won't find unless you look and you can't count until you've found.

Scientists and researchers normally try to refine the group they are studying by focusing on what its members have in common and eliminating from this group those people who do not share these characteristics but, in a topsy turvy way, while some researchers are trying to do this, others have increased the size and variability of the data set by introducing the term Chronic Fatigue Syndrome,

If you break up the elements of CFS in the same way (chronic, for some unspecified period of time; fatigue, a vague symptom of tiredness; syndrome, a set of heterogeneous symptoms, some of which some sufferers - but not all - have with different degrees of severity) you will see that it is so vague and in discriminatory that it could apply to any condition at all; yet it only gets clamped to M.E. Why not CFS/MS, CFS/Parkinsons, CFS/Getting over a bout of flu ... or any other you can think of. I don't know how the Department of Health, in the UK, or the Centers for Disease Control, in America, came to impose any top limit at all; the term is such a catch-all, it may as well be infinity. So long as ME/CFS are linked this way, you will never get an accurate count of the people with M.E. or, for that matter, any of the other conditions within Chronic Fatigue Syndrome. CFS is seriously holding us back and needs to be rendered extinct before any of us can make any progress.

To help calculate a more accurate number of M.E. sufferers, in the meantime, we can, at least be confident of some things that M.E. is and some things that it is not. It's certainly not laziness or hypochondria, when sufferers had a previously good attendance record at work or school and yearn to get back there and it is not hypochondria or attention seeking, when their visits to the doctor's surgery have always been for quite reasonable concerns that needed attention or treatment. M.E. is not fatigue, as we normally understand it - as those who prefer CFS, freely admit, and yet continue to use it synonymously. It does not come on as tiredness normally does with physical and mental effort but is ever-present for no such expenditure of energy. Nor is it refreshed by any number of hours of sleep. They are different things altogether, need different names and their different mechanisms need to be understood. Nor is M.E. a psychiatric illness, yet the only recommendation by NICE (National Institute for Health and Clinical Excellence) is for two management techniques, Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET), even though all the research - including the evidence from the advocates and practitioners themselves - shows that CBT is ineffective and GET makes a majority worse, some irrecoverably so.

On the other hand, M.E. sufferers do have some particularly noticeable symptoms in common that people with other conditions in the ME/CFS parcel do not have, which make for sensible study to separate them. One is a kind of dizziness and unsteadiness on the feet, called Orthostatic Intolerance and the other, which is called post exertional malaise, means that any effort expended requires a much longer recovery period than one would normally expect.

This Research Psychologist and veteran M.E. sufferer of 22 years suggests that the logical approach is to, first, refine the group of M.E. sufferers by extracting it from the polluted soup of Chronic Fatigue Syndrome conditions; next try to find the similarities that these people have in common which make it likely that they do have M.E. and the differences from other known illnesses, which exclude or make that diagnosis unlikely; then give them a battery of tests to see if we can pin it down more firmly, in the hope of suggesting appropriate treatment towards recovery and, hopefully, a cure. Until a strategy of this sort is adopted, people like Helen, me and however many there are like us, will remain ill for even more years than we've endured it now.

Yours sincerely
drjohngreensmith@mef
reeforall.org
Dr John H Greensmith
ME Free For All.org

Hi Helen, I am 36 and have had ME for 4 years. Although I am lucky to be married to a lovely man I too miss socialising with my friends dreadfully and understand how lonely and isolated you must feel. My advice for what it is worth is to get online and chat to other ME sufferers. Perhaps you could set up a page on Facebook for people your age in your area? It helps me to be able to chat to others in the same boat as me and I also can keep tabs on what my friends are up to even if i can't always join in. I am mostly housebound so this is my lifeline to the outside world. I wish you luck and get your Mum to write to your local MP and health trust highlighting your condition, we shouldn't have to fight for help when we are so ill but as life is unfair we have no other choice. It's great you have raised awareness via this news article every little bit of awareness helps. Also I would like to thank Dr Greenwood for his intelligent and informed comment.

RECOVERY FROM CFS - 50 Personal Stories is a book available from Amazon containing the stories of 50 people who recovered from M.E. back to normal health. Each man, woman and child in the book was diagnosed by a specialist as having M.E. and all used different methods of recovery. This is a positive book containing many helpful suggestions and even contact numbers for many of the authors. You can get FREE stories from the book from my website: www.alexbarton.co.uk
. Good luck with your own recovery.

I wonder why, since she says that all the case studies in the book that she edited had a diagnosis of M.E. (Myalgic Encephalomyelitis), Alexandra Barton did not call her book, "Recovery from M.E. - 50 Personal Stories" instead?"

It begs the question whether Alex considers that M.E. is synonymous and interchangeable with Chronic Fatigue Syndrome, or that it is a subset of CFS. In fact, it is neither. There is already sufficient postmortem evidence of inflammation of the spinal cord to justify the name Myalgic Encephalomyelitis and categorisation as a neurological, not psychiatric or somatoform illness. It is not at all like tiredness, as we normally understand it - as those who prefer CFS freely admit - but is ever-present and is not refreshed by any amount of sleep at all. The two things are quite different; deserve different names and different treatment.

In any case, even if any of the treatments, in Alex's armoury, either singly or in combination, have any great benefit for people with CFS - and this is questionable - all the research evidence for the NICE (National Institute for Health and Clinical Excellence) recommended management strategies of Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET) - including that of the same people who advocate and practise them - shows that CBT is ineffective for M.E. sufferers and GET makes a majority worse. Long term M.E. patients, who have tried everything on offer, are an easy target for unproven, unregulated and expensive radical treatments. Despite extravagant claims of very high percentages of recovery, from 85 to 100% (yes, every person who came to them!), the number of people remaining ill with M.E. for decades remains the same and there is no significant return to work, school, or resumption of a previously normally healthy life.

While it may be sensible to have a well-balanced diet and healthy lifestyle, with the right amount of activity or exercise, without overdoing things, there doesn't seem to be anything available to be purchased at Alex's business website, or even more expensively from others, who have the much higher overheads of a prestigious Harley Street address, that cannot be had freely from your GP, community nurse, The British Nutrition Foundation, BBC Health or other free websites, written by qualified people.

The main problem is that the adoption of the ME/CFS hybrid has polluted the data set making it impossible to extrapolate any findings from CFS to M.E. It is likely that most, if not all of these cases, did not have M.E. but some condition in the catch-all CFS bundle and may well have got better, in time, without any treatment, just the normal healing process of the body with time.

I think it is important that this information is available side-by-side at every place where Alex freely advertises her book, in order that M.E. sufferers may make an informed choice about whether to buy it and follow its guidance, lest false hopes are raised then are dashed, or unrealistic dreams promised that cannot be fulfilled

I wonder how many people with a diagnosis of M.E. (and I mean Myalgic Encephalomyelitis, not any other name taken to be its equivalent) bought her book, followed its recommendations and were cured, or recovered significantly? Common observation, statistical estimates remaining unchanged and research evidence suggest none and that is the conclusion I will go with unless Alex, or anyone else, can persuade me otherwise.

drjohngreensmith@mef
reeforall.org
Dr John H Greensmith
ME Free For All.org