Dr Charles Shepherd, the UK MEA and the OPATHY Questions.
Dear Mark/All,
Thank you for your response, it is appreciated.
Mark states: "I personally have no particular prejudice or firm opinion regarding the ME Association, nor of Dr. Shepherd himself. I must say that I do personally find his arguments in favour of the term "encephalopathy" to be quite strong, and in particular, the list of similar recognised encephalopathies seems a very strong point to me. It does seem to me that, in terms of the medical evidence, the term "encephalopathy" does have quite a bit going for it as compared to "encephalomyelitis", although I am not speaking as a medic or researcher but as a patient"
Firstly, I would strongly urge you all to read the background documents concerning Dr Shepherd that I previously mentioned again cited below. The context here is VERY important and patients are not served well by judging Dr Shepherd's actions in isolation.
Secondly, Dr Shepherd may himself have suffered with an encephalOPATHY as a result of chicken pox as a young adult and been very ill in the early stages but that does not necessarily mean that his illness was classic WHO-ICD10-G93.3 Myalgic Encephalomyelitis/ME. Compared to most classic ME patients it can be argued that Dr Shepherd has been professionally very active over the years, regularly travelling around the country. His level of recovery and activity seems to me to differ from most patients that I know of with classic ME.
Thirdly, Dr Shepherd does NOT have a substantial record of specialist clinical practice with ME patients. Professor Nancy Klimas however most certainly does and I would ask you, and others to mark her recent words on inflammation/encephalomyelITIS. In a radio interview on 19th September 2010, Professor Klimas was emphatic:
there is a chronic inflammation, neuro-inflammation, and it upsets the whole balance of your systemsthe patients become terribly ill. The immune system is really cranked up; its a tremendous amount of inflammation. I think that if doctors could get this in their heads that its sort of like lupus or one of these really inflammatory disordersit is that level of inflammation. Theres a tremendous amount of inflammatory stuff going on, and theres a lot of inflammation in the brain itself
http://www.litemiami.com/spotlite/index.aspx
Fourthly, note also that Professor Anthony Komaroff clearly and unequivocally states that the scientific evidence strongly underpins the World Health Organisation classification of ME/Post Viral Fatigue Syndrome (WHO ICD10 G93.3) as an EncephalomyelITIS:
there is now abundant evidence of measurable abnormalities in the central nervous system and the autonomic nervous system in people with this illness. That makes it neurologicalThats why I think it makes senseto call it Myalgic Encephalomyelitisbecause I think those two words adequately classify or describe an underlying biology that tests have shown to be the case
http://www.masscfids.org/news-a-events/2/221
I could cite more such specialist evidence and will return to this matter in the future but, for now, will leave the last word on this point to Professor Malcolm Hooper who, in a personal email to me of 4 October 2010, summed the situation up perfectly:
"I thought the encephalopathy question was dead as a dodo- apparently not. The evidence for an inflammatory process or processes underlying ME is incontrovertible as I have made clear in my Southampton presentation- ME is an -itis not an opathy; pathology (Choudhuri- Sophia Mirza), RNase-L story, genetics (Jonathan Kerr) studies, Patarca monograph etc."
(Professor Malcolm Hooper - email to Anglia ME Action, 4 October 2010).
Fifthly, Dr Shepherd perversely claims that he is seeking to aid the medical establishment's recognition of the illness by abandoning WHO ICD10-G93.3 medical taxonomy and then shockingly cites his input into the "London Criteria" in his highly questionable claim to be helping patients. On such matters I would draw your attention to some of the comments (with permission to quote) sent to me by Canadian ME specialist, Dr Byron Hyde, who has few international equals in terms of the comprehensiveness and numbers of ME patients he has examined:
"The two London criteria were composed largely by a group of experts in psychiatry who to the best of my knowledge see only psychiatric patients, who reputedly do no scientific in-depth investigation of their patients and more often than not, no investigation into the anatomical and physiological pathology of patient illness at all. In effect they have no idea of why these patients are ill.
Since many psychiatric patients are extremely fatigued by the medications that psychiatrists prescribe, it is understandable that the psychiatrists wish to blame the patient rather than their own prescribing habits. If their patients are true psychiatric patients, it is more than possible that they can at times be made to admit to any degree of symptoms real or imagined. The London panel of psychiatrists who largely invented the London Definitions have in effect, re-invented psychiatric disease by their London definition, definitions which have for all purposes never been used except to qualify for grant money or to have their musings accepted by accredited journals. Psychiatrists have never actually looked at M.E. and CFS patients from a scientific perspective, literally dragging these patients back into the dark ages of medicine.
There is another problem with their so called London Definitions. These were poor copies of the original 1988 CDC definition which in turn was invented by 15 "experts," who, with the exception of approximately 4 persons on that committee, had never seen before or after the publication of this 1988 definition any M.E. or CFS patients. In addition, these 11 of 15 experts to the best of my knowledge never published before or after any papers on CFS or M.E.
One of the four believed that CFS was a psychiatric disease. A second had serious brain pathology and eventually died from this pathology. It is my estimation that he had a significant fatigue syndrome that he personally blamed on CFS. Had he investigated his brain pathology as I suggested to him, his brain cancer might have been found early enough such that he might still be living today. You cannot embark on any scientific research by the CDC or London CFS definitions without first ruling out the pathological and pathophysiological causes of a patient's symptoms. This has never been systematically been done. CFS is not a disease. CFS is simply a group of incredibly poor definitions attempting to pigeon hole a group of severely disabled patients with missed serious anatomical and patho-physiological disease.
In effect the London Definitions are a bad copy of an appalling 1988 CDC definition, a definition which cannot be used to distinguish CFS from any pathology unless the patient is totally investigated to rule out non-psychiatric pathological or pathophysiological causes of memory & cognitive dysfunction or fatigue. It is appalling that such an investigation has never been systematically performed on these severely disabled patients.
It is my belief that the London definitions were developed for two purposes, (1) to obtain grant money from the NIH/CDC bank, money which never came and (2) to support their own mistaken belief that CFS was a psychiatric disease, thus corralling both M.E. and CFS patients for their own personal psychiatric gain."
(Dr Byron Hyde, Nightingale Research Foundation, in a personal email to Anglia ME Action on 5 October 2010).
Sixthly, given such controversy over medical taxonomy and Dr Shepherd's strong personal pre-existing views and involvement in the matter, patients should be extremely worried over The ME Association backed brain/CNS tissue study and the diagnostic selection criteria used for the deceased patients who are the subject of this study. There is a very real danger that this study will examine the brain/CNS tissues of patients who did NOT actually have properly diagnosed genuine ICD10-G93.3 ME in the first place and the absence of Encephalomyelitis in such non-ME patients will then be strongly used to FALSELY declare that genuine ME patients do not suffer from Encephalomyelitis.
Seventhly, to understand a major reason why all this is vitally important I would direct you to the words of someone who, above all others, has worked to shift ME patients from being recognised as biomedically ill to being viewed and treated as suffering from mental illness, one Professor Simon Wessely:
It may seem that adopting the lay label (of ME) reinforces the perceived disability. A compromise strategy is constructive labelling: it would mean treating chronic fatigue syndrome as a legitimate illness while gradually expanding understanding of the condition to incorporate the psychological and social dimensions. The recent adoption by the UK Medical Research Council and the chief medical officers report of the term CFS/ME reflects such a compromise
(BMJ 2003;326:595-597 doi:10.1136/bmj.326.7389.595; Simon Wessely, Baruch Fischhoff; Managing patients with inexplicable health problems).
http://www.bmj.com/cgi/content/full/326/7389/595
http://www.bmj.com/cgi/reprint/326/7389/595
Finally, look again at the medical dictionary definitions of EncephalOPATHY and note how common that wording such as the following is: "The hallmark of encephalopathy is an altered mental state." Whether by default or design, it is my concerned contention that not only do Dr Shepherd's actions on opathy etc go against the grain of genuine ME science and expertise, not only do they abandon decades of WHO medical taxonomy, they in my view actively facilitate the perverse step-by-step efforts of the psychiatric lobby to gradually relabel physical Myalgic Encephalomyelitis as a psychiatric fatigue syndrome. Adopting the OPATHY term is, in Simon Wessely's words, "expanding understanding of the condition to incorporate the psychological and social dimensions."
It is my URGENT concern therefore (given the ongoing 11th revision of the WHO ICD) that Dr Shepherd has been actively lobbying the World Health Organisation (and UK government agencies) to drop the current classification of the illness for one which will ultimately lead to patient harm. It is very telling in my view that I have now twice directly asked Dr Shepherd about his actions on such matters with regard to the WHO and he has not answered me. I therefore say again, do not judge Dr Shepherd's recent words and actions in absence of context, please do have a look at my earlier cited documents, now re-pasted below, and please do, politely, call Dr Shepherd to account for his actions and words regarding ME patients. This is important. Dr Bruce Carruthers did not give the following strongly-worded warning re Dr Shepherd's activities for nothing:
The Politics around this are horrendous, and the motive for any name change would seem to have less than the good of mankind at heart. I would not favour any kind of name change, since -itis is well established in the name ME, and there is no good reason for changing it, since - opathy would not reduce our state of ignorance re ME but serve to further confuse everyone- perhaps that is one of the motives behind the suggestion."
(Dr Bruce Carruthers, 2005 in an email to Anglia ME Action with a view to such comments being made publicly known after I spoke with him in person about such concerns at his Norfolk UK lecture on ME/PVFS/CFS. The email text is viewable online with additional comment on the INVEST IN ME website at:
www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm
Kev Short,
contact@angliameaction.org.uk
CONTEXT DOCUMENTATION:
1. Take a look at page 11 of the CORPORATE COLLUSION document by Margaret Williams, where you will see a summary of some of the concerns about Dr Shepherd and The ME Association. The document is also available online at:
http://meactionuk.org.uk/Corporate_Collusion_2.htm
2. Two other important documents in this respect are entitled CONCEPTS OF ACCOUNTABILITY by Sally Montague & Professor Malcolm Hooper and, by the same authors, CONCERNS ABOUT THE FORTHCOMING UK CHIEF MEDICAL OFFICERS REPORT ON ME AND CFS, NOTABLY THE INTENTION TO ADVISE CLINICIANS THAT ONLY LIMITED INVESTIGATIONS ARE NECESSARY - both are available online at:
http://meactionuk.org.uk/CONCEPTS_OF_ACCOUNTABILITY.htm
http://meactionuk.org.uk/Comments_on...Key_Group).htm
3. A very important book (available to order online) containing coverage of issues regarding Dr Shepherd and The ME Association is by Martin J Walker and is entitled:
SKEWED: Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.
Slingshot Publications. ISBN 0 9519646 4X. Available at Amazon and direct from the author at:
http://www.slingshotpublications.com/skewed.html
