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Some Open Questions to Dr Shepherd & the UK ME Association.

Discussion in 'Action Alerts and Advocacy' started by Anglia ME Action (UK), Sep 30, 2010.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    pictureofhealth wrote:


    From the Summary of the most recent MEA meeting of the Board of Trustees:

    "The MEA is now in a position to fund new research in addition to current commitments and the funding that has been set aside to help set up a UK tissue and post-mortem bank. Information on the work of the RRF can be downloaded from the research section of the MEA website."

    Source: Summaries of ME Association Board of Trustees meetings held on 6th and 7th of September 2010 and AGM (Annual General Meeting) held on 7th September: http://www.meassociation.org.uk/?p=1659

    I don't think this UK tissue and post-mortem bank project is actually off the ground, yet.

    Suzy
  2. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    Picture of health wrote: "As a patient, I have long been convinced that post mortem studies could provide the only way forward out of our conundrum. Therefore I am v much looking forward to reading the post mortem findings in this UK MEA study and paper and hearing the summary at the research conference later this year."

    All very well if the post-mortem studies are properly objective and done on patients that actually had Myalgic Encephalomyelitis and that it was diagnosed according to rigorous criteria using proper and full biomedical investigation when they were alive. The chances of that happening are however worryingly slim in my opinion. There are questions over Dr Shepherd's objectivity on such matters and therefore that of said study:
    1. He has already abandonded a 50+ year Ramsay definition that is essentially codified by the WHO in ICD 10 and has adopted and promoted an unproven broader 'opathy' definition of which a cardinal sign is, according to various medical dictionaries: p { margin-bottom: 0.21cm: "The hallmark of encephalopathy is an altered mental state".
    2. Dr Shepherd argued strongly against The ME Association and the ME Community adopting/using the Carruthers et al Diagnostic Protocols/Criteria.

    If this study was being done on patients that had been diagnosed by Dr Byron Hyde, for example, I would have confidence that it actually was a study on genuine ME patients. As things stand however, I think the MEA study has every possibility of being one that will falsely claim that genuine ME patients do not have Encephalomyelitis on the basis of post-mortem studies done on patients who never fulfilled genuine criteria for diagnosing ME in the first place. QED and even more aggrivation for genuine ME patients daily struggling with genuine Encephalomyelitis.
  3. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    Dr Charles Shepherd, Medical Advisor to The Myalgic Encephalopathy Association (UK) has asked me to post his below comments on the Phoenix Rising Bulletin Board, which in this instance, I am happy to comply and they are presented herewith my personal response to him of 4 Oct 2010. I hope that, in future, Dr Shepherd will respond directly on Phoenix Rising.

    Best wishes,
    Kev Short
    contact@angliameaction.org.uk


    Dear Dr Shepherd,

    With reference to your message below which I note states that it "MAY BE REPOSTED". "In the interests of balance and fairness" as you put it, you could quite simply register yourself on the Phoenix Rising message board via the web address you have just given to me and respond with your own point of view directly. You seem to have spent an unusual amount of time over the years emailing on various ME patient message boards, including at least one in the USA (Co-Cure), for a busy doctor so I can't quite see why you would not want to do so on Phoenix Rising (one of the better bulletin boards).

    However, on this occasion, I will comply with your request as you seem to be claiming that I have misrepresented you in some way. I most certainly do not feel that I have intentionally done this. I am struggling with my health presently and will have to more fully respond to all of your points and partial answers to my original questions at some later date. In the meantime, I shall briefly comment on four matters arising:

    Firstly, regarding the MEA and the Canadian Criteria. In my opinion I think it is entirely fair to say that you strongly cautioned MEA members against adopting the 'Canadian' Criteria - regardless of how you eventually voted on the matter in the end. Moreover, I don't think there is anyone, including Dr Bruce Carruthers, who would say that the Canadian Criteria are flawless, but for you to prefer the 'London Criteria' over the Canadian Protocols, as you apparently have done, is, for someone who is supposed to be an advocate for ME patients, frankly, shocking.

    Secondly, You say you prepared a detailed response to my original questions but I find that response inadequate and incomplete. For example, I specifically asked in my original questions if either you personally, or The ME Association (MEA), had lobbied the WHO to prefer the term ME-opathy over ME-itis. You have answered in the negative regarding The MEA but you have not made clear to me what you personally have done regarding the WHO in this respect.

    Thirdly, I note that you claim that you "have always argued in favour of properly investigating people with a possible diagnosis of ME/CFS" and I would therefore be interested in your detailed comments upon the following two documents by Professor Hooper & Sally Montague entitled:
    CONCEPTS OF ACCOUNTABILITY -
    http://meactionuk.org.uk/CONCEPTS_OF_ACCOUNTABILITY.htm
    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 -
    http://meactionuk.org.uk/Comments_on_advice_given_(by_a_member_of_the_Key_Group).htm

    Fourthly, you state that "in proposing the term encephalopathy about 10 years ago I was not seeking to alter the way in which ME is clinically described. However, if you are going to persuade the medical establishment that ME is a distinct clinical and pathological entity..."
    I am again shocked at your comments. The World Health Organisation has formally recognised ME as "a distinct clinical and pathological entity" since 1969. The majority of the World's Governments / Health Ministries subscribe to such medical taxonomy. Our own Department of Health, Ministers and Parliament in the UK have repeatedly confirmed subscription to such taxonomy. That seems like an awful lot of "establishment" recognition to me and it also seems to me that you are effectively attempting to disestablish such recognition by your advocating abandonment of the recognised term? The whole point of my challenge to you on such matters is that I do not believe unilateral abandonment of ICD10 G93.3 terminology by you and the ME Association then replacing it with an Encephalopathy label (that many medical dictionaries describe thus, "The hallmark of encephalopathy is an altered mental state") is ultimately as helpful to ME patients as you claim. Quite the opposite.

    To conclude here; you have criticised me "in the interests of balance and fairness..." yet what about balance and fairness to all of your new members who are not informed of the pitfalls of the MEA and its medical advisor abandoning WHO taxonomy when they join, who are ignorant of the fact that the MEA is out on a limb on medical taxonomy and who are effectively being mis-sold when they hand over money to what they think is a Myalgic Encephalomyelitis charity when it is actually something different?

    I will return to such points in the future when my health and other commitments are better suited.

    Kev Short.
    contact@angliameaction.org.uk
    p { margin-bottom: 0.21cm; }

    p { margin-bottom: 0.21cm; }

    On 04/10/10 11:44, Charles Shepherd wrote:
    Kevin

    In the interests of balance and fairness please could you add this (unedited) information to the Phoenix Rising message board discussion that you have initiated on this topic.

    http://www.forums.aboutmecfs.org/showthread.php?7861-Some-Open-Questions-to-Dr-Shepherd-amp-the-UK-ME-Association.

    Regards

    CS

    ______________________________________________________________________________________________________________________________________________________________________


    MAY BE REPOSTED

    Having spent a considerable amount of time preparing a detailed response to the open questions from Kevin Short about the decision of The MEA to use the term encephalopathy (as well as encephalomyelitis) I was surprised to receive a rather offensive email from someone who had been reading the overseas (US) public message board where my response is now being discussed:

    As this thread of messages contains some inaccurate and misleading statements (some of which are simply tedious repeats of misinformation that goes round and round the internet) about what the The MEA is doing re post-mortem research, as well as what are claimed to be my personal views on other issues, I have provided some brief corrections and clarification:


    CANADIAN CRITERIA

    I have never 'argued strongly against' the MEA adopting the Canadian guidelines. During the period that this was being discussed by MEA members, I wrote an article for the MEA magazine that summarised where I (and other doctors) have constructive criticisms about some of the clinical and diagnostic guidance. I have also pointed out that there are specific recommendations in the management guidance that would make it very difficult for an official body here in the UK (eg Dept of Health) to endorse or recommend some of these therapeutic interventions. So, in the overall conclusion to this article I stated ...while the Canadian guidelines are a very useful contribution, they are unlikely to be acceptable to UK medical decision makers without modification. Despite these concerns I still voted in favour of the MEA adopting the Canadian criteria (and still have a photocopy of my voting form) - as did the majority of MEA members. Total MEA membership votes in favour were 197; votes against were 144. The decision was happily accepted by MEA trustees and we now distribute copies of this guidance to MEA members, advertise the fact quite prominently in every single issue of the MEA magazine, and refer to the Canadian clinical guidance in our booklet for health professionals (ME/CFS/PVFS - An Exploration of the Key Clinical Issues).


    INVESTIGATION OF PEOPLE WITH ME/CFS

    I have always argued in favour of properly investigating people with a possible diagnosis of ME/CFS and the MEA booklet for health professionals devotes almost three pages to this crucial aspect of clinical/diagnostic assessment. The MEA guidance contains a long list of investigations that should be carried out in all cases and a further long list - including neuroimaging and infective disease screening - that depends on individual clinical circumstances. The MEA differential diagnosis table on page 15 (table 3) is the most comprehensive that I am aware of.

    I made similar recommendations regarding clinical and diagnostic assessment when I was a member of The Chief Medical Officer's Working group. Some were accepted. Others were not.

    In relation to the CMO WG report, I concluded (as did everyone else at the time) that there was not enough consistent evidence to recommend that antiviral testing (ie RNaseL testing), CFS urinary markers (CFSUMs) or neuroimaging should be form part of the routine investigation process.


    POST-MORTEM RESEARCH

    Obtaining post-mortem material from people who have died from ME or CFS is a complex, sensitive and time-consuming process.

    It is made even more complicated by the tragic circumstances in which these deaths frequently occur; the need to remove and preserve certain key neuronal tissues within a very short period of time following a death (ie ideally within 24 hours); and the need to carry out expert neuropathological dissection of the spinal cord. This is why the tissue bank feasibility study has been looking in detail at the way in which tissues are sourced, collected and removed after death, transferred and stored at a brain bank, and then ultimately used for research This academic research study is also examining all the legal, ethical and financial issues involved and includes face-to-face discussions with people who have ME/CFS..

    So instead of the present process whereby I try to follow up cases with the relatives and doctors involved when a death is notified to the MEA, the intention is to set up a donor register of volunteers that will contain comprehensive on-going details of their clinical situation - symptoms, investigations, diagnosis, co-morbidities, progression etc - so that all of this detailed clinical information is readily available at the time of death. This is very similar to the way in which brain and tissue banks for Alzheimer's and Parkinson's Disease currently operate, and with whom we are working on the current proposal.

    And if you are going to try and prove the hypothesis that people with ME have significant and on-going inflammation within their brain and spinal cord (ie encephalomyelitis) and so have a pathologically distinct illness from CFS then you are going to have to look at tissues from donors who currently come under the whole ME/CFS umbrella. So we will not be restricting the donor register to people who have self-diagnosed or doctor-diagnosed ME.

    As far as existing post-mortem material is concerned, some of this information is already in the public domain. What I can say in addition is that having obtained all the clinical information possible I am satisfied that the deaths involved so far are severe and genuine cases of ME and/or CFS.

    Setting up a post-mortem brain and tissue bank for ME/CFS is going to take a lot of time, effort and fundraising and it is something that I hope the whole ME community would wish to support. Fortunately, financial support has been forthcoming in the form of Ed Stafford's epic Amazon Walk and now a major donation from the people of Northern Ireland:http://www.meassociation.org.uk/?p=2184


    RAMSAY ME

    Finally, in proposing the term encephalopathy about 10 years ago I was not seeking to alter the way in which ME is clinically described. However, if you are going to persuade the medical establishment that ME is a distinct clinical and pathological entity that is worthy of research you are going to have to produce a research definition that is acceptable to the research community - hence my involvement with the development of the London criteria. Sadly, the almost complete removal of the term ME from medical journals and the research agenda starting in the mid to late 1980s has meant that this is unlikely to occur without the sort of clear pathological evidence that post-mortem studies may turn up.

    Fact of Life...


    Dr Charles Shepherd
    Hon Medical Adviser, ME Association

    MEA website: http://www.meassociation.org.uk

    ENDS


  4. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032


    Clin Pathol doi:10.1136/jcp.2010.082032
    Short report

    Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS

    Eliana M Lacerda1, Luis Nacul1, Derek Pheby2, Charles Shepherd3, Peter Spencer4

    + Author Affiliations

    1London School of Hygiene & Tropical Medicine, EPH/NPHIRU/CFS/ME Observatory, London, UK
    2Buckinghamshire New University, Uxbridge; and CFS/ME Observatory, London, UK
    3The ME Association, Gawcott, Buckinghamshire, UK
    4Action for ME, Bristol, UK

    Correspondence to


    Dr Eliana M Lacerda, London School of Hygiene & Tropical Medicine, EPH/NPHIRU/ CFS/ME Observatory, Keppel Street, London EC1E 7HT, UK; Eliana.Lacerda@lshtm.ac.uk

    Accepted 7 September 2010
    Published Online First 5 October 2010

    Abstract
    Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition, the aetiology of which remains controversial, and there is still no consensus on its nature and determination. It has rarely been studied in post-mortem examinations, despite increasing evidence of abnormalities from neuroimaging studies.

    Aim To ascertain the feasibility of developing a national post-mortem ME/CFS tissue bank in the UK, to enhance studies on aetiology and pathogenesis, including cell and tissue abnormalities associated with the condition.

    Methods The case study was carried out combining qualitative methods, ie, key informant interviews, focus group discussions with people with ME/CFS, and a workshop with experts in ME/CFS or in tissue banking.

    Results and conclusions The study results suggest that the establishment of the post-mortem ME/CFS tissue bank is both desirable and feasible, and would be acceptable to the possible tissue donors, provided that some issues were explicitly addressed.

    -------

    Ed: All authors members of the National ME Observatory Steering Group

    With acknowledgement to the person who sent me the link for this abstract.
  5. Mark

    Mark Acting CEO

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    Firstly I would like to apologise for my rather clumsy post earlier in this thread. My thanks to Jace for her much better explanation of the relevant terms, and my apologies to Sherby and to anyone else who was confused by my off-topic sidetrack about xenotropism and polytropism. All very poor on my part, I'm very sorry about that.

    I want to echo what Kevin said in regard to Dr Shepherd's response to him, asking Kevin to repost his reply on the Phoenix Rising thread:

    I quite agree that it would be far preferable for Dr Shepherd to post here directly. I was very pleased to see his prompt response on the MEA website to the issues raised here, and he stated there that he is pleased to see this particular debate reaching the US, so for a start I hope we can all agree that it is good to have this discussion as openly and directly as possible. I'm sure Phoenix Rising will be quite happy to welcome Dr Shepherd as a member (without that implying any endorsement of him or of the MEA, of course). Jenny Spotila of the CAA is also a member here, a not dissimilar scenario, and I do believe that such direct channels of communication are of enormous benefit to us all. Wasting our time writing about how "X asked me to post this here, please contact me here to get in touch with him", etc etc, is unnecessary: let's cut out the middlemen and save our energies to focus on the important issues.

    I have not studied the detail of this thread in any great depth, although I have quickly read through all the posts, and Dr Shepherd's replies. Having been somewhat outspoken in my earlier post, I want to say very clearly now that 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, and I'm prepared to be corrected on that point. I must say though, that neither term is likely to turn out to be an accurate description of the condition(s) we are referring to when we speak of ME/CFS, when the medical basis of these conditions is finally understood. XAND seems to have as much scientific evidence in its favour as anything else right now, for example, and "Myalgic Encephalomyelitis" doesn't emphasise the well-documented immune abnormalities particularly well either.

    As I say: I retain an open mind regarding Dr Shepherd, and perhaps this discussion will help me to make up my mind regarding some of the criticism I've read of him and of the MEA. But I must say this: I am not medically trained, although I take a keen amateur interest, and so I often find myself having to form my provisional views of organisations and individuals based on other clues. In that context, this quote from Dr Shepherd does not inspire me with confidence, since regarding a matter of which I do know a little - Phoenix Rising itself - the following seems misleading and unfair, and I do hope this is merely a consequence of Dr Shepherd being put on the defensive by the questions posed here by Kevin:

    It seems to me a shame that Dr Shepherd has characterised Phoenix Rising in this way - and that he appears not to have named or referenced us when describing just as "a US public message board"; this seems a similar approach to that taken previously when members here voted in the MEA internet poll (another episode which was less than impressive to me on the MEA's part). These seem to be signs that the MEA is taking an unnecessarily antagonistic stance towards this site, which I find hard to understand - I do hope we can correct any false impressions of us on this thread.

    The association of an offensive email which Dr Shepherd says he has received (behaviour I absolutely do not condone) with this message board, strikes me as an insinuation against Phoenix Rising, and not at all a fair one. The description of Phoenix Rising as an "overseas (US)" board is also misleading, especially since every single poster on this thread is a UK resident, and we are proud to have many members from all over the world. Phoenix Rising is a "US" site in one respect only, that its founder is a US citizen. In fact I think I'm right in saying that a majority of the moderation team are not from the US. And finally the characterisation of this thread as "inaccurate and misleading statements (some of which are simply tedious repeats of misinformation that goes round and round the internet)" doesn't go down too well either, especially since I have yet to see anything to indicate that anything anybody has said on this thread is factually incorrect. I've just scanned through once again and I'm still wondering what the "inaccurate and misleading statements" are, but perhaps I will understand either when I have time to read through everything more thoroughly, or when Dr Shepherd registers here to point out the inaccuracies directly and specifically.

    This strong form of wording, apparently attacking Phoenix Rising and criticising this thread in particular, is perhaps understandable if Dr Shepherd is on the defensive, and that too would be understandable given that the thread's title is a direct challenge to the MEA and to Dr Shepherd. But I do think the tone of the discussion is nevertheless civil and well-argued, as we always strive to be here, so I hope Dr Shepherd will register here and engage in discussion directly with the ME/CFS patients on this board. There are hundreds of UK ME/CFS patients who are members of this site, and our total membership is at least three times that of the MEA by my calculations, so this does seem to me to be an absolutely appropriate place for the UK's oldest ME charity to engage directly.
  6. Anglia ME Action (UK)

    Anglia ME Action (UK)

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    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
  7. Angela Kennedy

    Angela Kennedy *****

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    Mmn. I've tried to find those 'recognised encephalopathies'. Few of them seem to be actually recognised conditions. I'm still looking.
  8. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Kevin Short writes:


    It is worth noting that in the current version of ICD, ICD-10, there are no definitions nor any other textual content for either Postviral fatigue syndrome or (Benign) myalgic encephalomyelitis currently classified at G93.3 in ICD-10: Volume 1: The Tabular List, Chapter VI (6): Diseases of the nervous system under the parent term G93: Other disorders of brain, and in the case of Chronic fatigue syndrome, indexed to G93.3 in Volume 3: The Alphabetical Index.

    Therefore, "classic WHO-ICD10-G93.3 Myalgic Encephalomyelitis/ME" is meaningless since what ICD currently understands by the term "Myalgic Encephalomyelitis" is unspecified; also unknown, is what ICD considers the relationship between Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and Chronic fatigue syndrome to be, since in ICD-10, the relationship between the three terms is also unspecified.

    Similarly, references to the "WHO ICD-10 definition of ME" or the "official WHO definition" that we sometimes see on websites and in comments to media articles are meaningless, since there is no defintion of ME in ICD-10.


    For ICD-11, ICD concepts (units, entities or categories) will be defined through the use of multiple parameters according to a common "Content Model" [1].

    The content model is made up of three different parts:

    A) Descriptive Characteristics
    ICD Concept Title
    Hierarchy, Type and Use
    Textual Definition
    Terms
    Index Terms
    Synonyms
    Inclusion Terms
    Exclusion Terms

    B) Clinical Description
    Manifestation Properties
    Signs & Symptoms
    Findings
    Temporal Properties
    Severity Properties
    Functional Properties
    Treatment Properties
    Diagnostic Rules
    Reason For Encounter

    C) Formal Characteristics
    Body Structure
    Morphologic Abnormality
    Causal Properties
    Mechanisms/ Agents
    Risk Factors
    Genomic Characteristics
    Dysfunction


    [1] User Manual [Content Model User Guide, 53 pp Word doc]
    Key ICD-11document: Identifies the basic properties needed to define any ICD concept (unit, entity or category) through the use of multiple parameters:
    http://dxrevisionwatch.files.wordpress.com/2010/10/icd1120alpha20user20guide202620september1.doc

    [2] Update on the ICD-11 Alpha Draft at 06.09.10
    Dx Revision Watch: http://wp.me/pKrrB-MD
  9. currer

    currer Senior Member

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    Hi all!
    Can we support each other please? Dr Shepherd has worked hard for years to help ME sufferers. It is relatively unimportant what the disease is called as long as it doesn't imply we are bonkers. The most important thing is to help the people who are trying to help us.
    I understand that we are ill and this disease can make the best of us anxious and disturbed. We also have to advocate for ourselves and have to face stigma and discrimination in our lives. This damages us. But we have driven doctors away from working in this field because we attack them. We need to encourage new young doctors to develop an interest in working in ME. Too much squabbling drives them away and plays into the hands of those who say we are not right in the head. I do not think we are to blame because we are ill and damaged by the harm inflicted by living in a society that ignores and disparages our suffering. However we need to find the strength to work in a positive way and not criticise people over minor disagreements.
    Marty likes this.
  10. Angela Kennedy

    Angela Kennedy *****

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    Uh? Squabbling? Not right in the head? minor disagreements? anxious and disturbed? driving doctors away?

    Are you being ironic? Or is this from the 'ad hominem the ME/CFS community' handbook? I'm beginning to think there is one somewhere...
    Wildcat likes this.
  11. Wildcat

    Wildcat Senior Member

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    Currer:
    "But we have driven doctors away from working in this field because we attack them. We need to encourage new young doctors to develop an interest in working in ME. Too much squabbling drives them away and plays into the hands of those who say we are not right in the head."


    Hi, out of interest, Currer, where did you hear or read that story?
  12. currer

    currer Senior Member

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    I was told it by a doctor running a medical school who wanted to encourage postgraduate medical students (non psychiatric ones) to take an interest in CFS/ME. His concern was that the few non psychiatric doctors interested in CFS/ME will retire and no-one will take their place.
    CFS/ME patients are often so (justifiably) angry and desperate that their energy is displaced onto the people who are trying to help them. The world of many CFS/ME patients is very small (because they are so ill) so irritations are magnified. I know what I am saying because I have done the same thing myself - and always regretted it afterwards. We carry the stigma of this illness every day. We never know what others really think of us and we live with constant financial stress. On top of this we have to fight for ourselves because few help us. This makes us stressed and paranoid. Ordinary people have no experience of this complex discrimination and damage (unique to this illness) and they are sometimes affronted by our behaviour without understanding the root causes. It is unwise to alienate people who want to help us. Why would a young doctor want to work with us if he/she had to constantly fend off criticism? Criticism he/she would not have to face in another specialty? I do not think that work in CFS/ME is ever highly paid or prestigious work either so why not do something easier to pay the mortgage?
  13. Wildcat

    Wildcat Senior Member

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    Unfortunately it very much sounds like you have been spun a yarn, Currer.

    The rest of the disability movement worldwide has fought for years to remove the yoke of infantilisation - we don't really need it in the ME community. We certainly don't need, as a community, to internalise the infantilisation that is part of the silencing of the ME community from without.

    You do appear to be labouring under a number of illusions about the "behaviour" of ME patients -
    Min likes this.
  14. Wildcat

    Wildcat Senior Member

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    Currer wrote:
    "I was told it by a doctor running a medical school who wanted to encourage postgraduate medical students (non psychiatric ones) to take an interest in CFS/ME. His concern was that the few non psychiatric doctors interested in CFS/ME will retire and no-one will take their place."

    But its interesting to hear what myths may be circulating in medical schools - mythmaking being a prominent feature of the UK ME policy of the last two decades.
    Min likes this.
  15. currer

    currer Senior Member

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    One of the problems in setting up the CFS/ME services in Britain was that not enough non-psychiatric doctors showed an interest in the setting up of the new service or working n the new clinics. If only psychiatrists are interested in CFS/ME then the illness will continue to be interpreted in psychiatric terms. We need people from other specialties to work in this illness.
    The government, whatever its' policy, cannot force doctors to work in a field they don't want to work in. This results in a circular situation where the only feedback the government can obtain about ME comes from the doctors who work in its' clinics - who are overwhelmingly psychiatrists.
  16. Angela Kennedy

    Angela Kennedy *****

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    And where are you getting THIS narrative from?
  17. Mark

    Mark Acting CEO

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    Hi Currer. I too am very big on the point that we need to work together as much as possible, and to try to take the heat out of the situation as much as possible. But I also feel I ought to caution to you that some of the language in your post could be seen as a little inflammatory in itself. The suggestion that "this disease can make the best of us anxious and disturbed", while it's accurate I must admit (anxiety having been a significant symptom for me), seems a bit out of place - I don't see anybody on this thread whose critiques are anxious or disturbed.

    This whole business of us 'attacking doctors who try to help us' is complicated. That accusation is levelled quite frequently at patients, and it can't be denied that there's sometimes an aggressive edge in the way some people lobby. But we don't have any place for that sort of behaviour here on Phoenix Rising in any case. And I must say that the person who I've seen to be most keen to emphasise this whole point is Simon Wessely himself, and in a very misleading and manipulative way. SW is somebody else who says he is here to help us, but I don't see that as a very credible claim given his behaviour - albeit that it's certainly possible that he believes in what he's doing.

    Wessely seems to miss no opportunity to tell other researchers things along the lines of 'Oh it's a great shame that so many doctors and researchers are put off by the aggressive behaviour of patients towards them, we have great need of more talent in CFS research, but it's hard to persuade people to get involved because they get such awful flak...please do get involved though, it's very rewarding...'. Similarly when he and his ilk warn doctors that they might naturally become disgusted by us - he implicitly condones and encourages that disgraceful phenomenon. I think a psychologist is well aware that saying things like that is likely to put people off in itself, it just seems like a way of enhancing that image of us as angry nutters. Very easy to play up to with people who are so neglected and abused, and very easy to exploit as a self-fulfilling prophecy.

    And the truth of the matter is this. Researchers and physicians who are obviously honestly interested in ME/CFS research on the basis of trusting and listening to patients, and based on the belief that it is a disease, an illness, needing biomedical research, and not a 'BioPsychoSocial' condition - those sort of researchers are supported, loved, lauded, praised by the ME/CFS community. The warmth of the community towards those who are seen to be genuinely trying to help them is overwhelming! Witness the thousands of letters of support for Dr Myhill in her GMC hearing. Witness the love that has been poured on the WPI. Dr Mikovits was sent a gift of a free spa bath recently by a group of patients who thought she looked tired at the XMRV Workshop! The doctors and researchers who are genuinely interested in helping us all seem to me to get huge support from the community. Even if those people sometimes say or find things we don't like, or don't want to be the case - John Coffin, Jonathon Kerr - we can see that they are clearly on our side and we stand by them. That's what I've seen, anyway.

    I am very confused about Dr Shepherd. I haven't seen anything he or the MEA have written or done which seems to justify the political objections to him or them, and yet at the same time, there does seem to be a large body of well-informed opinion against him. One way or another, I think that's a huge and fundamental problem for ME sufferers, which is why I'm hoping he will join this site and debate with his detractors here.

    I have read what Dr Shepherd wrote about the name change, and he does seem to me to see ME as a physical condition and not a psychological one. For example this quote from him seems quite clear:
    One does have to be careful here because the modern "mind/body" arguments of people like Simon Wessely often do read as if they are talking about a physical illness and yet when you unpick them, they are more subtle than that. But the above doesn't sound like the language of a psychosomatic theorist to me, closet or otherwise.

    So I am confused about this. I've glanced at some of the links Kevin posted, from which I can conclude that individuals whose work I respect a lot, like Hooper, Williams and Walker, appear to associate Dr Shepherd as an apologist for the psychiatric lobby. But without seeing any evidence that this is really the case, I can't make that judgement. I'm not prepared to accept that Dr Shepherd is some kind of spy working for the enemy based on comments like these, and that interpretation seems to go against what I've seen him saying publicly.

    The best way I can sum up my opinion as it stands is as follows. Taking the example of the name change, on balance, it seems to me that it was not a good idea. On further reading of this thread I note that removing "myelitis" also removes "inflammation" and leaves basically "painful disorder of the brain", as well as flying in the face of the campaign objective to get the UK authorities to stick to the WHO categories. I'm interested to learn more about these "encephalopathies" that Angela can't track down. At some point I will pick one or two details like that, drill down to the detail until I understand them, and then make up my mind about the whole thing. But for now it just seems to me that the name change was and is an unhelpful move, but it does not particularly make me suspicious of Dr Shepherd's motives.

    The following seems to me to be the crucial point, and it's perhaps a very hard one to make, but I do believe in it strongly; I've said this a few times before and I'll say it again, because it's one thing I'm quite certain of, having myself been attacked here in the past and having had my motives questioned, an experience that has given me some good level of certainty about the dynamics.

    I believe it is quite wrong, and unhelpful, and stupid, and unscientific, and impossible, and I would even argue immoral, to attempt to look inside somebody's head and interpret what might be going on inside their mind that is causing their physical illness, or their behaviour. I think that's unscientific because it is talking about an essence - the mind - that is by definition private, and which nobody has access to but the owner of that mind. In the absence of any kind of telepathy, and in view of what we learnt from Descartes, I just think there is nothing solid one can investigate there, in terms of what's going on in somebody else's mind. One can't even be certain, philosophically speaking, that anybody else has a mind. That analysis is the essence of my objection to the psychiatric/psychological approaches to unexplained illnesses and to ME/CFS in particular. I think it's completely wrong to do this, it is a mistake, it is something humanity needs to learn not to do.

    And by the same token, I can't look inside Dr Shepherd's mind and surmise about his motivations, his secret objectives, or anything else that is based on conjecture and circumstantial evidence - such as the idea that the name change he appears to support is somehow a devious way of undermining us politically. Even if it's correct that the name change from -itis to -opathy is a bad idea, that doesn't imply that the people arguing for that change are doing so to deliberately undermine us. To make that sort of argument seems to me to parallel the sort of thing that psychologists do when they speculate that hidden psychological factors underlie our illness or behaviour. Instead, we should just stick to the arguments, ditch the ad hominem parts, and not get into the game of questioning people's motives. I know that important arguments of course do become emotional, but we save ourselves an awful lot of stress if we just stick to the issues and don't try to get inside other people's heads. If there is a smoking gun regarding Dr Shepherd's motivations in relation to ME, I certainly haven't seen it yet, so until I do, I'll continue to assume that he is somebody who has done a huge amount of work for ME sufferers over the years, and who doesn't deserve to be attacked personally - but doesn't have to be automatically agreed with either.

    And I repeat that I hope he will join Phoenix Rising to represent his point of view directly, and save others the trouble of acting as his apologist.
  18. Martlet

    Martlet Senior Member

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    Mark

    I wanted to go back to your first post in this thread where you say:

    "Encephalo" generally refers to the brain.

    Encephalomyelitis refers to INFLAMMATION of the spinal cord and brain and can be caused by various pathogens.

    Encephalopathy refers to injury to or disease of the brain, some types of which can be fatal while other types are transient. Adding "opathy" rather than "myelitis" doesn't minimise the illness at all.
  19. Mark

    Mark Acting CEO

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    Hi Martlet. Yes my earlier post was clumsy, I did apologise. Jace has explained it better earlier in this thread.

    The feeling people have expressed in this thread is that removing reference to inflammation and to the spinal cord does reduce the strength of what the name means. So many CFS specialists talk about chronic inflammation, that it does seem to me odd to remove that from the name. But I guess at the time this name change happened, there was less evidence re: inflammation?

    Wikipedia on encephalopathy does challenge what people have said on this thread though, and confirms what Dr Shepherd has said:
    http://en.wikipedia.org/wiki/Encephalopathy
    There is nothing in this wiki entry even hinting about psychological factors, just viruses and toxic insult and Lyme and Hashimoto's and loads and loads of other extremely relevant stuff.

    The list of encephalopathies Dr Shepherd mentioned is right there, too.

    So: I'm afraid that on further examination of the controversy, I don't get it folks. Why is inflammation of the spinal cord such a critical thing to drop from the name, and what is so weak about the term Encephalopathy? I can't see what's "watered down" about that term, on examination of the evidence. On the contrary: it seems more solid to me, because it removes one source of potential objection to the term ME - that inflammation of spinal cord is unproven. Whereas myalgic encephalopathy is pretty much indisputable, if you have symptoms like brain-fog, OI etc, and pain: it's asserting strongly that it's a pathology, not a psychological condition.

    The only real issue I have uppermost in my mind about the whole business of the name "myalgic encephalowhatever" now is: what about those whose illness is more characterised by ideopathic immune dysfunction than by severe neurological symptoms? I've had OI, short-term memory problems, dysregulation re: heat/cold, nervous twitches, concentration problems, personality changes, loads of stuff like that, and those do all come back whenever I'm relapsing, but I never used to see my illness as neurological until I compared notes with people here; instead I still do see the acquired immune vulnerabilities, the MCS etc, as the fundamental thing, and those things never go away no matter how much I improve.

    I only get the neurological symptoms whenever I'm exposed to all these immune challenges that I spent years eliminating from my lifestyle. If that really means I don't have ME but something different, then fine. But CFS would still be a terrible name for what I have, and the pattern still seems more like ME than anything else, so where does all this leave people like me, if it so happens that my spinal cord is not inflamed? Does anybody have evidence that their spinal cord is inflamed?!
  20. Angela Kennedy

    Angela Kennedy *****

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    Regarding the encephlopathies listed on wikipedia:

    Wikipedia is not a reliable knowledge source, especially the Lyme pages. There are massive ideological issues and power games at play there (have a look at the talk pages for example). Also remember anyone can edit.

    To ascertain whether a certain encephalopathy term is officially accepted in the medical/scientific lexicon we have to look elsewhere.

    Are they listed in the WHO ICD classification, for example? How often is the term used, and by who?

    Looking at that list of encephalopathies, some of them are not substantiated well.

    Kevin - could you give an example of where myalgic encephalopathy is associated with psychological disorder?

    My position is that Shepherd's apparent unilateral introducing of myalgic encephalopathy was invalid and wrong- and has had adverse effects on the stability of the terminology, and his belief that absence of much evidence means evidence of absence is fallacious. The way it was taken up BY VOTE and a CAMPAIGN by Shepherd goes against scientific process. The whole thing is a mess.

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