1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

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. Anglia ME Action (UK)

    Anglia ME Action (UK)

    Messages:
    26
    Likes:
    1
    Some Open Questions to Dr Charles Shepherd and the UK Myalgic EncephalOPATHY Association:

    Re Dr Shepherd's internet post of 28 September 2010:

    "The new MEA website was launched today:
    http://www.meassociation.org.uk"

    I note that the MEA website headline welcome comments state:

    "Welcome to The ME Association, also registered as The ME Society. We provide information, support and practical advice for people who are affected by ME/CFS/PVFS (Myalgic Encephalopathy/Chronic Fatigue Syndrome/Post Viral Fatigue Syndrome), their families and carers. We also fund and support research, and offer education and training."

    I would appreciate it if Dr Shepherd/ The Myalgic Encephalopathy Association would please publicly answer the following questions?

    1. Where, precisely, the disease entity "Myalgic Ecephalopathy" appears in the tenth revision of the World Health Organisation of the International Classification of Diseases as operative in the UK or, alternatively would they confirm that it does not appear there?

    2. Is the ME Association aware of the fact that past UK Government Ministers and the Department of Health have stated their formal acceptance of of WHO ICD 10 section G93.3 disease taxonomy concerning Benign Myalgic Encephalomyelitis (ME) and Post Viral Fatigue Syndrome (PVFS)?

    3. Why did The ME Association change its name from one indicating a disease entity formally recognised by the WHO ICD 10 (Myalgic EncephaloMYELITIS) to one indicating a disease entity with no such WHO recognition (Myalgic EncephalOPATHY)?

    4. What steps did the ME Association take to inform members of the pitfalls of abandoning WHO disease taxonomy in re-naming itself and please would you tell me if the ME Association have logged concerns and objections made by your membership on this point and if and where such concerns can be viewed?

    5. Has either Dr Shepherd personally or the organisation now known as The Myalgic EncephalOPATHY Association ever made any representations to the World Health Organisation in the past ten years to ask them to in any way change the wording/ categorisation of Benign Myalgic Encephalomyelitis / Post Viral Fatigue Syndrome (also referred to in the ICD 10 index as Chronic Fatigue Syndrome) currently listed in ICD 10 at section G93.3?

    6. What is Dr Shepherd's/ The ME Association's response to the following concerned comments of Dr Bruce Carruthers, principle author of the International/ Canadian ME/CFS Diagnostic and Treatment Protocols on the question of using the name Myalgic EncephalOPATHY in place of the WHO-recognised term Myalgic EncephaloMYELITIS?

    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).

    Note that this quotation was emailed to me personally by Dr Carruthers in 2005 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

    I have asked these questions publicly because I believe they are a matter of important public interest: particularly given ongoing steps by the WHO to undertake an 11th revision of their ICD, given the said relaunching of The Myalgic EncephalOPATHY Association website and given the fact that The Myalgic EncepalOPATHY Association charges Myalgic EncephaloMYELITIS patients money for membership and services. I am concerned that, in failing to regularly and adequately draw their members' and potential members attention to such concerns on disease labelling/taxonomy regarding the 'opathy' question, the ME Association may be effectively misleading them as to the true World Health Organisation classification of their illness and the pitfalls of not adhering to WHO ICD 10 classification as it currently applies in the United Kingdom.

    Public answers to such concerns/ questions by Dr Shepherd and The ME Association would therefore be most welcome.

    Kevin Short.
    contact@angliameaction.org.uk

    [Permission to repost].
    justy likes this.
  2. Sasha

    Sasha Fine, thank you

    Messages:
    8,039
    Likes:
    6,825
    UK
    Hi Anglia - have you contacted the ME Assocation to ask them these questions directly or to alert them to the fact that you've posted them here?

    I sometimes see open letters in the newspapers and wonder if the writer has actually contacted the person they're directed at!
  3. Min

    Min Senior Member

    Messages:
    1,183
    Likes:
    1,178
    UK
    The change of name to 'Encephalopathy' was the reason I left.
  4. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Hi, Anglia,
    May I first thank you for your excellent submission to the GMC re the Dr. Myhill case? It is brilliant work, and I suggest that everyone in the UK at least takes the time to read it. I have attached a copy here.

    This name business is so important. Our disease is called Myalgic Encephalomyelitis. It is how it is referenced in WHO, as you so rightly say. Name changes confuse the issues, and allow for misinformation. Why would one of our advocate organisations want to muddy the waters like this?

    It's not as bad as the CDC's CFS, but all the same, no, no, no!

    Can I make a general plea, re naming our neuro-immune disease? Can we, until a better consensus arises, only refer to ME (Myalgic Encephalomyelitis) with people who will understand that, and use ME/CFS for those uneducated about the disease, who would not understand the term ME alone?

    Rant over.

    Attached Files:

  5. garcia

    garcia Aristocrat Extraordinaire

    Messages:
    933
    Likes:
    102
    London, UK
    Yes Sasha, these questions have been sent directly to Charles Shepherd/Me Association. I for one am eagerly awaiting his reply.

    Well done Kevin!
  6. Sasha

    Sasha Fine, thank you

    Messages:
    8,039
    Likes:
    6,825
    UK
    Thanks, Garcia!
  7. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    I'm confused. Can you tell me what is the difference between Myalgic EncephalOPATHY and Myalgic Encephalomyelitis .

    Thanks in advance.
  8. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,442
    Likes:
    1,940
    London
    In case anyone doesn't know

    the MEA put it as a question to their members to vote on the name change. I'm a MEA member and I voted against the change. The majority of people who voted did vote for it though sadly.
  9. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    So if enough people had voted for it, the name of the illness could have been supercalifragilisticexpialidocious...
    justy and peggy-sue like this.
  10. Mark

    Mark Acting CEO

    Messages:
    4,527
    Likes:
    2,004
    Sofa, UK
    Thanks for some more great work bringing this issue to our attention Kevin!

    Without wanting to wade to deep into the controversy, I'll just note that it's theoretically a good thing to be open to one's membership to decide key issues, but I have reason to suspect that the MEA has a rather dishonest approach to "democracy", after their weird comments about their internet poll recently.

    Some members may recall that they warned they would have to report the "unusual voting patterns" on the poll (regarding preferred priorities for government discussion of ME/CFS) after it was linked to here and elsewhere and members were encouraged (by some) to vote for XMRV (and actually, I didn't personally cast my vote that way in the end anyway, because it didn't seem to me to be the most appropriate political priority for that particular meeting).

    I just couldn't understand the MEA's case, saying that all this would have "skewed the results", given that those voting can reasonably be presumed to have ME themselves and so their opinions are at least as valid and representative as any other visitors to the MEA site.

    But of even greater concern: they warned that they would "have to bring this to the attention" when they presented the poll to the govt committee!!! That freaked me out: the idea that a tiny little internet poll was being presented at a high level as if it were representative of patient opinion!

    Add the fact that the number of people voting had to be very small anyway, for our handful of XMRV votes to skew the results significantly. That really set alarm bells ringing. To me, the same pattern seems to apply with the name-change vote. It's so easy to present that by saying "here's an article describing why we want to change the name, we need your approval, please vote for or against". In any such scenario, sadly it's the case that a significant enough proportion of people will automatically vote for whatever they're asked to rubber-stamp, as an unthinking "act of support". Organisational procedural issues work that way more often than not in my experience. eg: "Technically, we need you all to vote to approve the accounts..."

    Anyway...regarding Sherby's request for an explanation: I'll have a go at it, with a little educated guesswork along the way. The point I think is this: the "myelitis" bit refers to demyelination: degeneration of the protective myelin sheath around the nervous system, which is the main clinical feature of Multiple Sclerosis. Whereas "opathy" would basically mean "some kind of problem with".

    Very roughly...
    Myalgic = pain;
    Encephalo = relating to spinal cord;
    myelitis = problem with myelin sheath
    opathy = some more general kind of dysfunction.

    So it would seem that the point they are making with the name change is: there is no good evidence of demyelination, we're not convinced about the myelitis part, so we think this is a more accurate name.

    It seems to me like a pretty technical, nitpicking word-game and rather short-sighted. As I was reflecting the other day: the 'S' in 'AIDS' refers to "syndrome" - but how appropriate is that name now? Really, the 'S' doesn't belong any more. But how practical, realistic, or helpful would it be to change the name now?

    ETA: And when you think about it, at least for many of us (myself included), "AIDS" would be a far more accurate name than any of the others. I have ideopathic (unknown cause) immune deficiency (or dysfunction), and I'm solidly convinced it was "Acquired" (somehow), so an "Acquired Immune Deficiency Syndrome" is exactly what I do have. There may be more to it, but I definitely do have "an AIDS"...

    So fine: sometimes the names become a bit inaccurate. Really we should just live with these things. And the most important point has been made earlier in this thread: you really should stick with the name the WHO calls it, and everyone else calls it, otherwise you just cause confusion: if you think the name should change, then campaign to the WHO on that issue, but if you change your organisation's name, you just make people wonder if you're talking about the same thing. Given the UK history of divergence from the WHO diagnostic criteria in this area, it seems like an inept political decision, at least...

    Similar issues apply to XMRV incidentally. I noticed a good point made about this somewhere (I forget where) the other day. As follows...

    XMRV = Xenotropic ( Murine Leukaemia Virus - Related ) Virus

    Or does it?

    Actually, on further reflection I realise that it really means:

    XMRV = (Xenotropic Murine Leukaemia Virus) - Related Virus

    In other words: The "X" means that the MLV that XMRV is related to is Xenotropic. It doesn't mean that XMRV itself is Xenotropic (with respect to mice - it infects other species but not mice).

    Similarly the PMRV sequences found by Alter/Lo are not necessarily sequences from polytropic viruses. Rather, they are sequences more closely related to P-MLVs than to X-MLVs.

    To know whether the actual "HMRV" or "HGRV" viruses detected are themselves "X" or "P" would require an attempt to infect mice with them: as far as I'm aware this has not been attempted.

    Just because these new gammaretroviruses are closely related to polytropic forms, doesn't mean that they themselves are polytropic. The full viruses sequenced by Alter/Lo may conceivably have lost the ability to infect mice. If you're following this, you may guess the rather curious word-game that's coming: it's possible that Alter/Lo's Polytropic Murine Leukaemia Virus Related Viruses are themselves actually Xenotropic! Would that then make them Xenotropic Polytropic Murine Leukaemia Virus Related Viruses?! And mean they are also XMRVs, MLVRVS, HGRVS, HXPMLVRVs...all those could be justified for the same virus...

    I do hope I've got that right and I'm not just introducing yet more unnecessary confusion. :) The article I read the other day, inspiring me to make this observation, really cast a new light on just how much of a technicality this XMRV vs PMRV question really is. Just as the 4 "PMRVs" are all viruses, there's a good case to say that they are all also XMRV's - because they are indeed viruses that are related to Xenotropic MLVs. They're slightly more closely related to Polytropic MLVs (and even that is just going by numbers to decide what's "related", which may turn out to be inaccurate as and when the "family tree" is understood), but they too are closely related to Xenotropic MLVs - so XMRV is not technically an incorrect name for them, it's just not as accurate as PMRV seems to be at the moment - even that might change!

    So anyway: the point of this diversion (sorry to go off-topic, hope it was of interest!) is to highlight that messing about with names generally only increases confusion, and I think the best plan in general is to stick with the simple but perhaps technically inaccurate names that have gained common usage: AIDS, XMRV, and Myalgic Encephalomyelitis.

    One final observation. I have mentioned ME/CFS to many friends and acquaintances recently. Almost without exception, people put on a blank expression: they've never heard of it. When I say "CFS: Chronic Fatigue Syndrome", again, the same blank look. When I repeat "ME ?" they generally say "Oh yes, I've heard of ME". So my conclusion is that ME is indeed the right term to be using, in the UK at least, if only for the purposes of recognition. After all, CFS was coined and adopted for reasons antithetical to our interests, and has been used to muddy the waters: the only reason we have to use it at all is because it's the term used in the US, and because many people have that diagnosis and need to find their way to sites like this. IMO. :D
  11. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,442
    Likes:
    1,940
    London
    Exactly Angela, the name of the association would have been "...."

    The Charities Commission may have had something to say about it (as they did when AFME tried to change their name)
  12. Sherby

    Sherby Sherby

    Messages:
    91
    Likes:
    0
    London UK
    Thanks Mark for the very well explained meaning of the opathy part. The rest of your post went straight over my head though. Will stick to the easier stuff in future.:confused:
  13. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

    Messages:
    1,795
    Likes:
    521
    UK

    As I could not remember the year in which the name change was ratified, the following information has been provided by Tony Britton, ME Association Press and Publicity:

    The decision by the ME Association to use the term "myalgic encephalopathy" in their title and company documents dates back almost ten years.

    The decision was discussed by the Association's Scientific and Medical Advisory Panel at the time.

    It was also discussed and debated by ME Association members at an EGM (Extraordinary General Meeting).

    This resulted in a vote being taken at the EGM on the name change that was held in London on 14 July 2001.

    1274 MEA members voted in favour of using the term myalgic encephalopathy. 43 voted against.

    -------------------------------------

    The Charity Commission entry for the ME Association records the change thus:

    http://www.charity-commission.gov.u...steredCharityNumber=801279&SubsidiaryNumber=0

    801279 - THE MYALGIC ENCEPHALOPATHY ASSOCIATION LIMITED

    Date registered 05 April 1989

    Other names
    MYALGIC ENCEPHALOMYELITIS ASSOCIATION (Old Name )
    THE MYALGIC ENCEPHALOMYELITIS ASSOCIATION (Old Name )
    THE MYALGIC ENCEPHALOPATHY ASSOCIATION (Old Name )
    THE ME SOCIETY (Working Name )
    THE ME ASSOCIATION (Working Name )

    Governing document
    MEMORANDUM AND ARTICLES OF ASSOCIATION INCORPORATED 16TH MARCH 1989 AS AMENDED BY SPECIAL RESOLUTIONS DATED 15TH JUNE 1991, 14TH JULY 2001 AND 3RD SEPTEMBER 2005.

    Ed: The MEA registered the name "The ME Society" in late 2008 and I had some correspondence with Neil Riley, Chair, Board of Trustees at the time.

    ------------

    The UK Association of Young People with ME (AYME) introduced the term "myalgic encephalopathy" into their literature, without comment, around the year 2000. At a later stage, they ran a ballot of their membership on whether the name should be formalised.

    -------------

    From a post of mine, on my own Yahoo Group, dated July 2005:

    "It is AYME who are asking their members to vote towards the formalisation of the use of the term 'opathy'.

    They are making this decision via an informal postal vote and a show of hands at their conference.

    Although AYME have been using the 'opathy' term since 2000, they are still listed on the Charity Commission site and on legal documents such as their Annual Report and Year end Accounts as:

    http://www.charity-commission.gov.uk/registeredcharities/showcharity.asp?remchar=&chyno=1082059

    MEMORANDUM AND ARTICLES OF ASSOCIATION INCORPORATED 27TH APRIL 2000

    Objects 1. TO ACT AS AS [sic] ASSOCIATION FOR YOUNG PEOPLE SUFFERING FROM THE DISORDER KNOWN AS MYALGIC ENCEPHALOMYELITIS (ME).

    They have been told by the Charity Commission that they must legally change the name to reflect the terminology they have been using informally for several years and this would mean changing the Mem & Arts as the MEA did several years ago."

    -----------------

    AYME's membership voted in favour of formal adoption of the use of "myalgic encephalopathy".

    The organisation is currently listed on the Charity Commission site thus:

    http://www.charity-commission.gov.u...teredCharityNumber=1082059&SubsidiaryNumber=0

    1082059 - ASSOCIATION OF YOUNG PEOPLE WITH ME LIMITED

    Date registered 17 August 2000

    Other names AYME (Working Name )

    Governing document MEMORANDUM AND ARTICLES OF ASSOCIATION INCORPORATED 27TH APRIL 2000 AS AMENDED BY RESOLUTION PASSED 13 AUGUST 2005

    Area of benefit NOT DEFINED

    Charitable objects 1. TO ACT AS AS ASSOCIATION FOR YOUNG PEOPLE SUFFERING FROM THE DISORDER KNOWN AS MYALGIC ENCEPHALOPATHY (ME). 11. TO WORK ON BEHALF OF THOSE YOUNG PEOPLE WHOSE LIVES ARE AFFECTED BY ME THROUGH MEDIA COVERAGE, REPRESENTATIONS TO GOVERNMENT AND OTHER AGENCIES, THROUGH TALKS, PRESENTATIONS AND THE FUNDING OF RESEARCH. 111. TO PROVIDE A SUPPORT NETWORK FOR YOUNG PEOPLE SUFFERING THROUGH ME THROUGH COUNSELLING, THERAPY AND WELFARE BENEFITS ADVICE AND TO PROMOTE CAMPAIGNS FOR THE RECOGNITION, DIAGNOSIS, TREATMENT AND ACCEPTANCE OF ME.

    ------------

    Action for M.E. also uses the term "myalgic encephalopathy" in its literature.
  14. jace

    jace Off the fence

    Messages:
    855
    Likes:
    170
    England
    Hi Mark, I hope you don't mind an expanded version of your information regarding the meanings of Encephalomyelitis (Inflammation of the brain and spinal chord) and Encephalopathy (non-specific problem of the brain, leaving out the spinal chord connexion)

    Myalgic = Muscular pain or tenderness, especially when diffuse and nonspecific
    Encephalo = comes from the Greek " enkephalon" meaning brain
    myelitis = inflammation/disease of spinal chord "itis" is the suffix for inflamation eg colitis = colon inflammation. many other examples
    opathy = The suffix "opathy" implies no specific type of pathology, so the term myelopathy is more general than myelitis.

    So Encephalopathy denotes a less specific disease, and leaves out the spinal chord connexion. Not as great a belittling of our disease as CFS, but not something to be encouraged, none the less. One seriously wonders why a ME "advocacy" organisation would embrace this change.
  15. Dolphin

    Dolphin Senior Member

    Messages:
    6,701
    Likes:
    5,514
  16. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    From Shepherd's account:

    So, does this mean that Shepherd himself thought up the name Myalgic Encephalopathy unilaterally? Did he publish arguments for the term in a peer review journal?

    Other thing - spasmophilia is a French term usually for Chronic fatigue- NOT Chronic Fatigue Syndrome... ?
  17. Anglia ME Action (UK)

    Anglia ME Action (UK)

    Messages:
    26
    Likes:
    1
    Dear All,

    I can confirm, that I did email my open questions to The Myalgic Encphalopathy Association / Dr Charles Shepherd diirectly as well as publicly. I have pasted the private response from Dr Shepherd below as he has made it public. I find his response unsatisfactory and will be returning to this subject publicly soon. However, my health has crashed somewhat and I need to deal with that for a couple of days. I firmly believe that Dr Shepherd and the Myalgic Encephalopathy charity are seriously letting ME patients down and that this has to be addressed. The ME Association has taken many thousands of pounds of ME sufferers' money and has not, in my view, given or giving the service it should. I also think that people need to be aware of a controversial history concerning Dr Shepherd and the MEA and should start by looking at the following:

    Firstly, take a look at section 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

    Secondly, 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_advice_given_(by_a_member_of_the_Key_Group).htm

    Thirdly, 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

    Best wishes,

    Kev Short
    contact@angliameaction.org.uk

    Text of email to me from Dr Charles Shepherd received 1 October 2010:

    Kevin

    This a slightly revised version of the reply that I placed on Local ME late last night.

    It is now being placed on the MEA website as well.

    Regards

    CS


    Use of the term myalgic encephalopathy on the new ME Association website

    Medical conditions of uncertain or unknown causation often accumulate a number of names which may or may not appear in WHO ICD10 (World Health Organisation International Classification of Diseases number 10). This is perfectly understandable given the fact that medical research is continually moving on and producing new information on disease causation and treatment which may, in turn, be relevant to the way in which the disease is named and classified.

    ME/CFS is no exception and has been called 'a disease of many names'. In America, it is also known as CFIDS (chronic fatigue and immune dysfunction syndrome); in Japan low natural killer cell syndrome; and in France it is sometimes called Spasmophilie. The discovery of XMRV, and a possible link to ME/CFS, has also led to the recent proposal that a new name based on XMRV and the associated neuroimmune disorder (ie X-associated neuroimmune disease/XAMD) could/should now be used in those people with ME/CFS who are XMRV+ve..

    Historically, I took the view that following publication of the 1996 Royal Colleges Report into ME/CFS, which resulted in a determined effort by some doctors to completely remove the term myalgic encephalomyelitis from UK medical language (and this had already largely occurred at the time as far as international medical publications and research was concerned) that it was time to put forward a new name that would keep the initials ME but could not be criticised as being pathologically inaccurate by doctors - as was/is frequently the case with the encephalomyelitis part of ME. Hence the introduction of the term myalgic encephalopathy..

    Since then, the term myalgic encephalopathy has become accepted by many doctors, as well as the Department of Health and other official bodies in both the UK and overseas. This initiative has therefore had a degree of success in taking the heat out of the intense medical arguments surrounding the name encephalomyelitis and helped to ensure that ME is still being used, but without hostility, by at least some doctors.

    The decision by The ME Association to use the term myalgic encephalopathy in their title and company documents dates back almost ten years . The decision was fully discussed by our Scientific and Medical Advisory Panel at the time. It was also discussed, debated and voted on by MEA members at an EGM (Extraordinary General Meeting) that was held in London on 14 July 2001. 1274 MEA members voted in favour of using the term myalgic encephalopathy. 43 voted against.

    The MEA has not consulted with, or written to the WHO on this proposal and myalgic encephalopathy is not listed in WHO ICD10. But this does not prevent doctors, people with ME/CFS, or official/government bodies using the term if and wherever they want to . The MEA and myself use both encephalomyelitis and encephalopathy. For example, I normally use encephalomyelitis when doing media work and in joint initiatives with other ME/CFS charities but tend to use encephalopathy when speaking to doctors. There is no intention to try and force people or organisations to use this alternative name. It has just been put forward as a proposal for discussion and a way of allowing doctors to use the term ME when they would otherwise refuse to do so because of the term encephalomyelitis.. But everyone is free to make up their mind on whether and when it would be more helpful to use either option.

    I remain open-minded about what may be happening in the central and peripheral nervous system in ME/CFS. However, I do not believe that there is any robust research evidence, at present, to confirm the use of the term encephalomyelitis - inferring significant and active inflammation involving the brain and spinal cord. I believe that encephalopathy, meaning a significant abnormality in various aspects of normal brain function, is a more appropriate name to use in our current state of knowledge regarding the neuroscience of ME/CFS..

    I am one of a very small number of doctors who is actively trying to resolve the mystery of what is happening to the central and peripheral nervous system in ME/CFS through the use of post-mortem tissue research. To do this I am involved in various aspects of post-mortem tissue research and the MEA is currently raising funds, funding post-mortem research activity, and carrying out a feasibility study - all with the intention of setting up a UK based post-mortem tissue and brain bank. This is now the subject of a paper that is currently being prepared for publication. Some preliminary results from recent post-mortems are also due to be presented at an international research conference later this year. And while the already reported finding of dorsal root ganglionitis (which can also occur in Sjogren's syndrome and varicella zoster infection) in one ME/CFS post-mortem case is very interesting, it does not equal encephalomyelitis.

    If it does turn out that this type of research demonstrates the presence of encephalomyelitis in the brain and spinal cords of people with ME/CFS there will be no need to consider any other name for this illness.

    More information on the post-mortem research that is being funded and carried out by the MEA Ramsay Research Fund can be found on the MEA website: http://www.meassociation.org.uk/?page_id=1086

    More information on the use of the term encephalopathy:

    The reason why so many clinicians and researchers now either refuse, or are extremely reluctant to use the term ME - as myalgic encephalomyelitis - is due to the continuing lack of sound research evidence to demonstrate that the principle pathological feature in ME/CFS is a widespread inflammatory change taking place within the brain (ie encephalitis) and the spinal cord (ie myelitis). And while there is undoubtedly some evidence of past or present inflammatory changes (+/- immune system dysregulation) within the central nervous system taking place in some people with ME/CFS (mainly in research defined CFS cases) this is not the sort of evidence that would confirm a clinical or pathological diagnosis of encephalomyelitis to a neurologist.

    Evidence of past or present inflammation within the CNS can have a number of explanations and care needs to be taken to avoid drawing conclusions from existing research studies (the results of neuroimaging studies in people with research defined CFS in particular) that cannot be justified on scientific grounds. Adopting this approach is also likely to be counter-productive when it comes to challenging medical opinion on the issue of nomenclature.

    Consequently, some doctors, including myself, have proposed that the term encephalopathy should replace encephalomyelitis (as the E in ME) on the grounds that encephalopathy is a far more appropriate description of the neurological symptoms, signs and investigative abnormalities (neuroimaging and neuroendocrine in particular) that have been described in the literature.

    Encephalopathy is also a term that doctors cannot simply dismiss on the grounds that it is pathologically inaccurate in relation to ME (or research defined cases of CFS).

    There does, however, continue to be considerable confusion over what an encephalopathy is with some people claiming, quite wrongly, that it is a relatively benign psychiatric diagnosis rather than a serious medical diagnosis with neurological symptoms and complications.


    To provide some clarification, some of the key features of an encephalopathy (all of which are consistent with ME/research defined CFS) are listed below:

    1 A significant and sometimes diffuse disorder of the brain that can involve both changes to structure and function.

    2 A permanent or reversible neurological disorder than can be caused by infections (viral, bacterial, prion), metabolic or mitochondrial dysfunction, exposure to toxins (eg drugs, chemicals, pesticides), lack of oxygen or blood supply to the brain.

    3 A disorder that commonly produces serious disturbances in cognitive function - involving memory, concentration etc.

    4 Other neurological symptoms that can be found in an encephalopathy include myoclonus (twitching of muscles or muscle groups), poor co-ordination of limb movements, nystagmus (involuntary eye movements), tremor, muscle atrophy and weakness, dysequilibrium and unsteady gait, paraesthesiae (sensory disturbances), hypothalamic dysfunction and heat intolerance, orthostatic intolerance and postural hypotension.

    5 More serious neurological symptoms, as described in section 4.2.1.2 of the Chief Medical Officer's report into ME/CFS (eg seizures), can also be found in encephalopathies.

    6 Mood disturbances can occur - as they sometimes do in ME/CFS.

    7 Objective abnormalities can be found on neuroimaging, spinal fluid examination and electroencephalograms - depending on the cause of the encephalopathy.

    8 Some encephalopathies are fatal.


    Examples of some well recognised encephalopathies include:

    Bovine spongiform encephalopathy ('mad cow disease')

    Coxsackie virus encephalopathy

    Diabetic encephalopathy

    Enteroviral encephalopathy

    Glycine encephalopathy - a paediatric metabolic encephalopathy

    Hashimoto's encephalopathy - associated with Hashimoto's thyroiditis

    HIV encephalopathy (and AIDS dementia complex)

    Hepatitis C encephalopathy

    HHV-6 encephalopathy

    HTLV encephalopathy

    Hypoxic ischaemic encephalopathy - from decreased oxygenation to the brain

    Liver (cirrhotic) encephalopathy - from advanced cirrhosis of the liver

    Lyme disease encephalopathy

    Mitochondrial encephalopathy (and MELAS) - involving damage to mitochondrial DNA

    Mycoplasma encephalopathy

    Sarcoid encephalopathy

    Toxic encephalopathy - often leading to permanent brain damage

    Uraemic encephalopathy - build up of toxins in renal failure

    Wernicke's (thiamine deficiency) encephalopathy

    These are all very serious medical conditions with neurological complications and symptoms. They are not psychiatric conditions and they are not treated with psychiatric interventions.


    This is an important debate and I am pleased that it is now taking place in America as well as here in the UK.

    Dr Charles Shepherd
    Hon Medical Adviser, MEA


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

    ENDS
  18. Anglia ME Action (UK)

    Anglia ME Action (UK)

    Messages:
    26
    Likes:
    1
    Sorry, "section 11" of the CORPORATE COLLUSION document in my last post should have read page 11. I'm refering to the section entitled:
    "The Wessely School psychiatric lobby and ME/CFS patients charities"

    p { margin-bottom: 0.21cm; } Firstly, 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
  19. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

    Messages:
    534
    Likes:
    1
    Europe
    MEA's Post Mortem Research

    QUOTE: "I remain open-minded about what may be happening in the central and peripheral nervous system in ME/CFS. However, I do not believe that there is any robust research evidence, at present, to confirm the use of the term encephalomyelitis - inferring significant and active inflammation involving the brain and spinal cord. I believe that encephalopathy, meaning a significant abnormality in various aspects of normal brain function, is a more appropriate name to use in our current state of knowledge regarding the neuroscience of ME/CFS..

    I am one of a very small number of doctors who is actively trying to resolve the mystery of what is happening to the central and peripheral nervous system in ME/CFS through the use of post-mortem tissue research. To do this I am involved in various aspects of post-mortem tissue research and the MEA is currently raising funds, funding post-mortem research activity, and carrying out a feasibility study - all with the intention of setting up a UK based post-mortem tissue and brain bank. This is now the subject of a paper that is currently being prepared for publication. Some preliminary results from recent post-mortems are also due to be presented at an international research conference later this year. And while the already reported finding of dorsal root ganglionitis (which can also occur in Sjogren's syndrome and varicella zoster infection) in one ME/CFS post-mortem case is very interesting, it does not equal encephalomyelitis.

    If it does turn out that this type of research demonstrates the presence of encephalomyelitis in the brain and spinal cords of people with ME/CFS there will be no need to consider any other name for this illness." END QUOTE

    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.

    I think if demonstrable signs of inflammation and/or any obvious abnormal physical findings are detected in post mortem studies, this will be definitive evidence that no doctor, scientist, public health body, politician, pharmaceutical or insurance company provider can ignore. Not one of them - even the UK ones - could be that stupid.
  20. Angela Kennedy

    Angela Kennedy *****

    Messages:
    1,026
    Likes:
    152
    Essex, UK
    But - there are not many ME post mortem brains available I should imagine. There will also remain the problem of how were they diagnosed (which criteria). Even a positive correlation therefore would not be definitive proof of encephalomyelitis. However, negative results will not be proof of absence of encephalomyelitis.

    The 'encephalopathy' debacle is about lack of knowledge and failure to establish methodical, clear scientific illness categories. Its about inappropriate unscientific conflation of terms, and lack of knowledge leading to multiple, contested terms for illness entities.

    It's a mess, with real-world adverse effects, and those claiming scientific authority on this matter bear the responsibility for this.

See more popular forum discussions.

Share This Page