By: Dr John H Greensmith, ME Free For All.org
The reason I am absolutely certain that Yvette Cooper's Consultant cannot reliably say that 90% of people with M.E. (Myalgic Encephalomyelitis) make a full recovery (Yvette Cooper: 'There's nothing better than politics', Guardian, 4 December 2010) is that no one in the World knows how many people have M.E. The shocking reality is that there has never been an agreed figure for M.E. sufferers. It follows, therefore, that no one could say how any percentage fares at all. This doesn't seem to stop people from doing so.
Any estimates of the hybrid Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), which is a fudged collective diagnostic term for several conditions having chronic fatigue (which M.E. sufferers do not routinely have and not having some cardinal symptoms, which M.E sufferers do have), makes matters worse because experimental research samples, from which conclusions are extrapolated to M.E. sufferers, may not have contained a single person with this dreadfully debilitating neurological condition, which is being denied its own identity. Yet this is how too many doctors and researchers, who ought to know better from school level statistics, persist in proceeding.
It is not always certain that people said to have had M.E. did actually have it but, for example, may have had a particularly severe infection of Epstein-Barr Virus (Glandular Fever), which can take 2-3 years to get over. Yvette Cooper may have been among these.
I hope that you will inform your readers of these serious caveats that must accompany any estimate given. It would be wiser not to make any wild guess until we first have a clear figure for people who have M.E., not polluted by any other illnesses.
In the meantime, this Research Psychologist and veteran M.E. sufferer of 22 years experience would suggest that Scottish TV Doctor Debbie Wake is nearer the mark when she says that, "very few M.E. sufferers recover, very few return to work." (STV, 28 January 2010). Both reckonings can't be right and we won't know for sure until we have some reliable figures, which Yvette Cooper might press for.
3 comments:
I read the interview in the Guardian & was dismayed with the casual assumptions and misinformation.
Thank you for working to correct these misapprehensions and the many others you've covered.
Vicaro.
As a severe ME person, I am happy to see you post Dr. John Greensmith's letter. It is good to read his polite but accurate rebuttal of the nonsense people promulgate about ME by asserting it is CFS or anything other than a distinct neurological entity, ME, recognised in decent medical textbooks and WHO diagnostic codes. Thank you both for telling the truth.
I am glad I didn't see this article in Saturday's Guardian, it would've made me mad. Dr Greensmith's letter is brilliant. I can only conclude that Yvette Cooper's consultant lives in a parallel universe where 90% of PWME make full recoveries. I have no idea if Yvette Cooper had ME or not but I am always suspicious of former sufferers speaking of recovery so blithely.
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