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Michael Sharpe: "Chronic fatigue syndrome: Neurological, mental or both" incl. PACE

Discussion in 'Latest ME/CFS Research' started by Dolphin, Apr 25, 2011.

  1. Wildcat

    Wildcat Senior Member

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    Hi Enid,

    its very refreshing and encouraging to hear of neurologists (and doctors from other disciplines) taking ME seriously (despite not knowing what to do). But unfortunately its a case of individuals being sensible and medically minded enough to do so. The issue is that they should ALL have been issued with guidelines based on the Canadian Criteria, and informed by the substantial evidence from the nearly 5,000 published research studies that confirm biomedical abnormalities in ME, despite not knowing ultimately yet what the cause is

    So its very important to hear about the exceptions to the constructed fiction that Neurologists don't as a whole believe that ME is a physical disease.

    If they were given the full range of research on ME the majority might perceive the disease more accurately.
  2. Enid

    Enid Senior Member

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    Quite agree Wildcat - and we all know who held everything up with mumbo jumbo theories. What was particularly frightening was one of many collapses - stretchered into A & E (basic tests) coming too to find 3 very junior Docs telling me they had a new theory - "all in the mind" and sent a psychiatrist in. So these "somatisation" theories were obviously taught at medical school. That was 8 years ago, just hope the Psych stranglehold on ME has/will be broken now - Canadian Criteria adopted in total - all medics taught from medical school on.
  3. Dolphin

    Dolphin Senior Member

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    I think what needs to be factored into any discussion is the prevalence of Munchausen's Syndrome by Proxy and the like. I'm not convinced it is that high especially in a form that looks like M.E.

    I think a problem is that professionals get into much more trouble for missing a case of child abuse than for diagnosing it when it's not there. Expecting 100% sensitivity (or close to it) of a system of diagnosis means the specificity will likely drop a little or sometimes a lot unless the system is careful designed.
    Perhaps in some situations in society, the harm caused may not be as great as giving somebody with ME a MSbP diagnosis/inappropriately forcing them to exercise which could cause long-term harm.
    Also, it is a bit different to a lot of areas in medicine where harm avoidance is very important - drugs for example may only cause bad side effects to a small percentage but this may be enough for it not to be able to go on the market.
  4. Snow Leopard

    Snow Leopard Senior Member

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    Unfortunately your experiences are perhaps the exception and not the norm.


    The articles in question are:
    http://www.sciencedirect.com/scienc...69c6c576aaecdfb17995b817769322f0&searchtype=a

    http://www.sciencedirect.com/scienc...62438ae8628f5607101066fc2da8188b&searchtype=a

    http://www.sciencedirect.com/scienc...da79b9c6234434d137f9f1b140f0c99e&searchtype=a
  5. In Vitro Infidelium

    In Vitro Infidelium Guest

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    What is there to 'defend' ? If Wessely, White and Sharpe have exercised "control" of the medical and public perception of ME, how have they achieved that without compliance and/or collaboration from politicians, public servants, all medical disciplines via the Royal Colleges, the BMA and the media ? And how does this have anything to do with a very few outrageous examples of medicalised abuse ? No one (outside of the IoM) has ever sought to justify the Ean Proctor case, but it was 23 years ago in a jurisdiction that at the time still applied corporal punishment as a criminal sanction, including for homosexuality. What does the Proctor case tell us about anything more general and relevent to the present ? Certainly Wessely's role is less than flattering and it shows him as being an arrogant twat unable to gague the likely effects of his interventions - but Wessley wasn't Ean Proctor's doctor and had no control over his care.

    That Wesely, White and Sharpe have been very deft at communicating is undoutedly true, but there has been no alternative medical model vocalised by any other group of medics or specialism - are W,W&S wizards who have struck everyone else dumb and have the media and and the whole medical profession in their thrall ? Of course not. If conceptions such as Munchhausen By Proxy are a threat to children's well being, then that threat extends far beyond CFS affected children, as has been proved, MSBP was an invention of Roy Meadow who was a paediatrician with no formal psychiatric training (he claimed inspiration from Anna Freud) and Meadow was eventually struck off by the BMC . MSBP is now widely considered an unsafe diagnosis, although there are attempts to rename it - Factitious Disorder by Proxy .

    Wessely, White and Sharpe have done no more than 95% of all medical professional in terms of advancing their careers along the lines of least resistance, their ideas on CFS have prospered because no one else in medicine has found value in challenging those ideas. If we want change, then that change has to be advanced on a wide medical basis such that there is broad support throughout the medica profession, - making it a battle with psychiatrists based on long held grievences will simply confirm existing biases. After all what medic in their right mind wants to get involved with a ptaient group that appears intent on perpetually replaying the medical equivalent of the Battle of The Boyne

    IVI
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    To be clear, Sharpe's comments are based on the survey that Snow Leopard has linked to. Certainly there were, prior to the 2004 NICE guildelines, numbers of Neurologists interested in CFS, however none seem to have put up much of fight in the refocissing of services and have been happy to be 'reassigned'. Interestingly the BRI which once dealt with CFS as a neurology specilsm, now deals with it in Rheumatology. Disease interest is subject to fashion and it should be a surprise if UK neurology currently does not see CFS as a promising field.

    IVI
  7. Wildcat

    Wildcat Senior Member

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    In Vitro Fidelium wrote: What does the Proctor case tell us about anything more general and relevent to the present ? Certainly Wessely's role is less than flattering and it shows him as being an arrogant twat unable to gague the likely effects of his interventions - but Wessley wasn't Ean Proctor's doctor and had no control over his care.




    @ In Vitro Fidelium: Professor (then Dr) Wessely most definitely was instrumental in the sectioning of Euan Proctor. I wonder why you attempt to minimise Professor Wesselys influence in the Euan Proctor case, as his influence went way beyond that of the generalised "arrogant twat"?



    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm

    On 11th July 2001, the Daily Telegraph published an article which clearly showed that children and adolescents were being forcibly removed from their parents and placed in psychiatric care, sometimes with the backing of a Court Order (How the law is being used to force treatment on children parents of ME sufferers are being victimised by the Children Act. The Countess of Mar; Daily Telegraph, 11th July 2001).

    Wessely was first involved in this practice in 1988, just two years after he obtained his MRCPsych, when on 3rd June he wrote about 12 year old Ean Procter: I did not perform a physical examination but was told there was no evidence of any physical pathology. Ean had lost the ability to speak, which Wessely asserted was elective mutatism (sic).

    Wessely wrote: I have considerable experience in the subject of myalgic encephalomyelitis. I feel that Ean needs a long period of separation from his parents. For this reason, I support the application made by your department for wardship.

    On 10th June 1988 Wessely provided another report on Ean Procter, in which he wrote: I did not order any investigations. Ean cannot be suffering from any primary organic illness, be it myalgic encephalomyelitis or any other. Ean has a primary psychological illness (and) requires skilled rehabilitation to regain lost function. I therefore support the efforts being made to ensure Ean receives appropriate treatment. After his signature, Wessely wrote: Approved under Section 12, Mental Health Act 1983.

    That same month, without ever having spoken to Eans parents, social workers supported by psychiatrists, armed with a Court Order that had been specially signed on a Sunday and in the presence of police officers, forcibly removed the sick child from his distraught parents.

    Wesselys involvement with the wardship of Ean Procter is incontrovertibly established, yet in a Channel 4 News programme on 26th August 1998 in which the forcible removal of another child with ME/CFS was being discussed, when asked by the presenter Sheena McDonald if there can ever be a case for the coercive approach in situations involving the forcible removal of a child with ME/CFS from the parents, Wessely replied: I think its so rare. I mean, its never happened to me. Wesselys elective amnesia was broadcast on national television for all to see.
  8. Wildcat

    Wildcat Senior Member

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    In Vitro Fidelium wrote: "After all what medic in their right mind wants to get involved with a ptaient group that appears intent on perpetually replaying the medical equivalent of the Battle of The Boyne"


    Don't you mean "A patient group that has been persistently PORTRAYED by the very psychiatirsts whose influence we are discussing as "replaying the medical equivalent of the Battle of the Boyne".

    By the way the Battle of the Boyne is hardly a relevent historical reference, being a battle fought between between two rival claimants of the English, Scottish and Irish thrones in 1669.
  9. Wildcat

    Wildcat Senior Member

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    Correction - The Battle of the Boyne took place in 1690 and should be placed in the context of the prededing English Civil War.

    The quest for recognistion of their illness and humane treatment by disenfranchised and very sick people in the late 20th and early 21st Century does not equate to historical military battles, however interesting military history may be.
  10. Wildcat

    Wildcat Senior Member

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    It really is interesting how ME sufferers are persistently *Portrayed* as "Angry" for merely writing.


    HIV AIDS sufferers held a protest that closed the San Fransisco Golden Gate Bridge in an attempt to bring the attention of the public to the seriousness of their illness and its neglect.


    ME sufferers have held a small number of polite, restrained, lawful static protests outside the DOH, the MRC, Gresham College and Barts Hospital, with placards and leaflets. Photo records of those patient protests attest to the 'normality' and reasonable demeanor and behaviour of the small number of patients able to attend.

    Hardly the "Angry" patient population portrayed by those seeking to discredit ME sufferers by caricaturing them as "Angry".


    ME sufferers are hardly a raucous antisocial mob. So why the persistent portrayal of them as more "Angry" than any other patient group?
  11. Wildcat

    Wildcat Senior Member

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    Can you imagine the national media and medical journal coverage if an ME sufferers' protest closed Westminster Bridge?
  12. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    A quick interjection about proposals for ICD-11.

    The iCAT collaborative authoring platform through which the ICD-11 Alpha Draft was being prepared was taken out of the public domain last November.

    This has been replaced with a Beta drafting iCAT platform currently accessible only to WHO, ICD Revision Steering Group, Topic Advisory Group members, Working Group members, IT technicians and external reviewers of proposals and content.

    I am waiting for the WHO's Dr B stn, who contacted me a couple of weeks ago, to clarify when ICD Revision intends to place the Beta Drafting platform back in the public domain for limited public interaction and input. A date of 16 May was being discussed at the ICD Revision Process Alpha Evaluation Meeting, held in Geneva, in April.

    Targets for the Beta Draft have been running behind schedule and when the Beta platform is released it may not be as advanced as ICD Revision had projected by May 2011, in terms of population of "Content Model" parameters and the development of the software on which the multi authoring platform operates.

    In the meantime, screenshots of the proposals for CFS in ICD-11 as they stood at November, last year, can be seen in this Phoenix Rising post:

    Post #81

    http://forums.phoenixrising.me/show...E.-Association&p=167301&viewfull=1#post167301

    Note that "Gj92* Chronic fatigue syndrome" is proposed as a Chapter 6 Diseases of the nervous system ICD Title term with a Definition and other "Content Model" parameters;

    * "Gj92" is a "Sorting code" and not the ICD-11 code.

    in the "Terms" Tab for Gj92 Chronic fatigue syndrome, "Benign myalgic encephalomyelitis" is listed as an Inclusion to "Gj92 Chronic fatigue syndrome".

    in the Chapter 5 "Details" for F48.0 Neurasthenia

    postviral fatigue syndrome is specified as an Exclusion to F48.0 Neurasthenia with the Reference

    "G93.3 -> Gj92 Chronic fatigue syndrome"


    in Chapter 18 "Details" for R53 Malaise and Fatigue

    fatigue syndrome postviral [sic] is specified as an Exclusion to R53 Malaise and Fatigue with the Reference

    G93.3 -> Gj92 Chronic fatigue syndrome

    Go here for screenshots


    Suzy Chapman
  13. Enid

    Enid Senior Member

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    Can I add a thought about the areas of specialisation IV speaks of and the difficulties - the compartmentalism one meets over a long period of investigations - bowel problems/neurological/endocrine/gynae etc. each their own. In the early days I instinctivley asked my GP if someone could consider the whole collection of symptoms from well to problems in all areas. She herself said "and it's getting more and more specialised". ME just does not fit into this sort of diagnostic model - separate "organs"/systems - combination of many abnormalities (neurological predominate of course and any sly attempt to reclassify is scandalous). Thanks to Suzy and all her hard work.
  14. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    @ In Vitro Infidelium

    Apologies if you've already been asked and answered this question: you are evidently invested in chronic fatigue syndrome, you maintain a blog, post here, post on the MEA's main site and edit the Wikipedia Talk page for CFS.

    Is your interest in CFS from the perspective of a patient, a carer or a professional and if a professional, what is your field?

    Suzy
  15. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Enid, you might be interested to know that there is an ICD-11 Discussion Document which discusses the concept of a "Multisystem Chapter" for ICD-11.

    ICD-11 Discussion Document Multisystem Chapter

    [12 pp Word doc; Discussion document: Multisystem Chapter, authors: Aym, Chalmers, Chute, Jakob.]

    which can be downloaded from this page on the ICD-11 Revision site

    Suzy
  16. In Vitro Infidelium

    In Vitro Infidelium Guest

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    Invested yes, although this pseudonymous account is purposefully largely apersonal for reasons I started to explore on the CFSMiirror blog (although that project is somewhat stalled) As I wrote in the first blog post Hospitals are full of Sick People I was originally diagnosed with PVFS, although Im inclined to accept a broadly inclusive disease description while symptomology remains the only defining characteristic.

    As far as perspective is concerned I dislike terms such as patient and sufferer as these are (IMO) case specific designations, for instance while I may be a patient in relation to receiving medical care, that is a very time limited relationship, and while I do indeed sufferer from a chronic illness, that is only a very small aspect of what forms my perspective . I appreciate however there is no easy alternative to using patient and sufferer although my preference is to use the somewhat clumsy M.E/CFS affected person/people which Ive noted a few others have used elsewhere this term does have the (dis)/advantage of not distinguishing between suffers, carers, relatives, friends etc, on balance I think this is advantageous and doesnt in general actually worsen the pre-existing problem of sufferers being talked for . Ive been ill for too long to have any field of professional expertise.

    IVI
  17. Enid

    Enid Senior Member

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    Thanks for your post 115 Suzy - at least I have a brother (Prof Neurology - well aware of the interaction of systems - one thing/failure leads to others) - not the basic thinking of say GPs - I've actually seen a Surgery with a notice to patients "no more than two symptoms at a time". As patients we are so to speak "off the radar" from the beginning.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    An evil man. He's sounding even more like Wessely than before.

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