We urge you to ensure that as many of your M.E. contacts, worldwide, know about this very important ME series on the “You and Yours” programme on BBC Radio 4, starting Friday 2 November and then From Monday 5 – 12 November 2007.
In the first of a special series on ME, David Puttnam producer of Chariots of Fire, Bugsy Malone and The Killing Fields tells how ME has affected his life and career.
If you cannot listen, live, at 12.04pm, just after the midday news, daily, it may be possible to “listen again” after 3pm here:
(or go to the BBC website and search for “You and Yours” if the link does not work).
You may also wish to contribute to their discussion board here
I have submitted this fundamental question about M.E. (below), which I hope they will ask contributors during the week but, whether they do or not, everyone is very welcome to come to our forum and discuss it here
(or, if the link does not work, go to www.mefreeforall.org , click on “forum” in the menu, left, log in, go to “ME Community Room” and join in the debate.
You and Yours ME Series: Fundamental question for contributors.
Before you broadcast even the first programme in this series, M.E . sufferers will be grateful that You and Yours is giving this unprecedented focus to their serious neurological illness, so often hidden away because of its debilitating symptoms, which keep many sufferers invisible and for giving the series its correct name, M.E., not the fudge CFS/ME which, so many of us believe, is seriously impeding research progress in finding the physical cause of this illness which, in turn, should suggest appropriate treatment towards cure.
The term Myalgic Encephalomyelitis (from myalgic, meaning muscle pain, encephalo-, relating to the brain and spinal cord and itis-, meaning inflammation) should be restored. There is ample research evidence to support all its elements, including the most controversial part, inflammation, which has caused some to prefer Myalgic Encepahlopathy but, even with this version of M.E., there is no place for “fatigue”.
The overwhelming feeling of lethargy, which M.E.sufferers experience, is not the same as tiredness we all usually understand. It does not come on with the expenditure of physical or mental exercise but is omnipresent for no such effort. Nor is it refreshed by any number of hours of sleep as normal fatigue is. In addition, there is an extraordinarily long period of recovery time following even a minuscule amount of effort (“post exertional malaise”) and there is a whole range of symptoms, including muscle pain in all limbs, poor memory and concentration, poor mobility, dizziness etc. that the word ‘fatigue’ alone does not encompass. The main problem with ‘chronic fatigue’ is that it is too broad, too all-inclusive, to be of any discriminatory value and, as a result, tends to dilute any research findings. For example, people routinely have chronic fatigue after any illness, or surgery. I can’t think of an illness that does not have fatigue following it.This is not to belittle chronic fatigue; it is very debilitating thing to have but it is to make the distinction between it and M.E.
Will you ask any contributor who uses the term CFS/ME: Does the ‘/’ between them mean “and” or “or”? Are you talking about one illness, ‘CFS’ and another illness, ‘ M.E.’ ? Do you think that M.E. is one of a number of illnesses under the umbrella CFS? Do you think CFS and M.E. are synonymous and interchangeable? Along with other organisations, worldwide, ME Free For All. org advocates dropping CFS altogether as unhelpful to all. For example, since chronic fatigue, follows every illness, you might as well say Illness/ME. It is of no more discriminatory value than that. If you assert that M.E. and CFS are synonymous and interchangeable, why use two terms? Why not drop one altogether? You wouldn’t say Rubella/German Measles because both are the same. You wouldn’t say Measles/German Measles because they are discretely different. You wouldn’t say Chronic Fatigue Syndrome/German Measles (or any other illness) because it would be too generalised to be of any value.
The tangled mess due to lack of agreement about terminology is not merely a semantic one, which impedes research progress into the physical cause of M.E., it also has very serious deleterious consequences for recommending treatments that are not appropriate for people with M.E. and may even be harmful to some. Since M.E. is, crudely, indiscriminately, bundled in with all other illnesses having chronic fatigue as a principal symptom (and what would that not include?) sufferers are offered only two management techniques, Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET), the first of which has no lasting benefit for people with M.E. and the second of which (as research by the 25% Group, which represents severely affected people with ME, shows) makes up to 82% of sufferers worse after it, some irrecoverably so, in wheelchairs or bed-bound.
I look forward to seeing whether You and Yours presenters can manage to get an unequivocal answer from some contributors in this week that many of us have not been able to secure in decades of trying.
With thanks for this important initiative, on behalf of the whole M.E. community.
Dr John Greensmith
(Research Psychologist, diagnosed M.E. 19 years, now suffering bad relapse, some days requiring bed-rest, some up but not dressed.)