Feedback on the RSM conference 28th May

Discussion in 'Fibromyalgia Main Forum' started by tansy, May 3, 2008.

  1. tansy

    tansy New Member


    As previously announced, the ME Association was allowed to set up a
    display stand at the meeting on Chronic Fatigue Syndrome (NB: no
    mention of ME in the official title) for health professionals (only)
    that was held that at the Royal Society of Medicine (RSM) on Monday
    28 April.

    During the day, myself and Tony Britton were able to talk to a
    considerable number of those attending about the key issues
    concerning people with ME/CFS - in particular the scandalous lack of
    MRC funding for biomedical research; the challenges to the NICE
    guideline; and problems with new guidance on benefits (from the
    Department of Work and Pensions) and occupational health (from NHS
    Plus). We were also able to distribute quite a lot of MEA literature
    covering these concerns, as well as providing information from the
    Tymes Trust and details of the forthcoming biomedical conference
    organised by Invest in ME.

    The meeting was opened by Dr John Scadding, Dean of the RSM. During
    his short opening address Dr Scadding referred to the fact that there
    was a demonstration going on outside and that this reflected the fact
    that there were deep concerns coming from the patient community about
    the content of this conference. There was no criticism of the
    demonstration and I understand that RSM staff took refreshments out
    to those involved later in the day. So a well conducted demonstration
    appears to have been effective in bringing these concerns to the
    attention of the Medical Establishment.

    I spoke to Dr Scadding before the meeting started and it looks as
    though the RSM is keen to put on a meeting in the next academic year
    for both patients and doctors as part of their programme that brings
    patients and doctors together. We have agreed to discuss this
    proposal in more detail at a later date.

    I had originally intended to stay for the full day and attend all the
    presentations. Unfortunately, I was unable to do so as I also had to
    attend an important family funeral in the afternoon.

    My report is therefore confined to the first presentation given by
    Professor Peter White. I had to leave half way through questions - so
    there may be additional points of interest that are not included in
    this summary.

    Dr Charles Shepherd
    Hon Medical Adviser, ME Association

    PROFESSOR PETER WHITE: Professor of Medicine at Bart's and the London
    School of Medicine

    PRESENTATION TITLE: What is Chronic Fatigue Syndrome? And What is ME?

    What is CFS?

    Peter White started off by summarising the five ways in which he
    believed chronic fatigue and chronic fatigue syndrome, the name
    preferred by most physicians, can be classified using ICD10:

    a.. F48: neurasthenia

    a.. F45.3 somatoform autonomic dysfunction
    b.. F45.9 somatoform disorder, unspecified

    a.. R53 malaise and fatigue
    b.. R54 senile asthenia
    [CS note: The only place that ME appears in ICD10 is in the neurology
    chapter under G93:3; CFS is also indexed to G93:3]

    He then summarised the 7 different research criteria that have been
    published for CFS in adults and children:

    a.. CDC Holmes
    b.. Australian
    c.. Oxford
    d.. London
    e.. CDC 1994
    f.. CDC Revised 2003

    However, as there is no evidence of a CDC defined CFS out there in
    the general population, this is not a useful criteria to use for
    clinical diagnosis.

    Peter White also pointed out how research (eg the Witchita
    epidemiological study) indicates that for every patient with CDC
    diagnosed CFS there are far more people in the population with
    chronic disabling fatigue.

    He then considered the three different clinical definitions that can
    be applied to CFS:

    a.. Canadian Criteria
    b.. NICE criteria (ie fatigue plus one symptom from the NICE list)
    c.. Royal College of Paediatricians and Child Health criteria

    and what he felt were their relative value in clinical practice,
    especially in regard to their use of lists of symptoms in addition to

    Peter White pointed out that as more symptoms are used to define a
    core illness the more likely it is that people with a psychiatric
    illness will be brought into the definition.

    [CS note: Most members of the public probably don't realise that as a
    rough rule of thumb many doctors work on roughly the same basis - the
    more ' non red flag' symptoms someone has above 5 in number, the more
    likely they are to have a psychiatric illness.]

    Peter White considered that the Canadian Criteria had too many
    symptoms (8 in all) from long lists of grouped symptoms - some of
    which (eg ataxia) had an uncertain relationship to CFS. As a result
    he could not recommend the use of the Canadian Criteria for the
    clinical diagnosis of CFS.

    The new NICE criteria, which only require fatigue plus four symptoms,
    allows a diagnosis to be made around four months and are, he felt,

    The RCPCH criteria were his 'Gold Star' choice when it came to making
    a clinical diagnosis of CFS.

    What is ME?

    Peter White gave a brief summary of events at the Royal Free Hospital
    back in 1955, the editorial in the Lancet introducing the term
    ME/myalgic encephalomyelitis, and pointed out that some of the
    clinical features of ME (eg cranial nerve palsies) were not seen in
    individual cases today.

    ME implied an incurable organic neurological illness that was
    originally defined on the basis of symptoms and signs found in
    outbreaks/epidemics. However, a conference at the RSM in 1978 had
    helped to legitimise a move from ME being an illness that occurred in
    epidemics to an endemic one.

    To back this up, part of the presentation on ME was accompanied by a
    slide using the front cover of the January issue of ME Essential
    magazine with a photo of a severely affected lady in a wheelchair.

    Peter White believed (on the basis of a piece of research) that
    having a label of ME carried a worse prognosis than having a label of

    ME is, therefore, a name/diagnosis that is not helpful for doctors to

    Lumpers and Splitters

    The final part of this presentation looked at the issue of lumping or
    splitting - in other words do conditions such as CFS form part of a
    spectrum of overlapping disorders or are they more distinct clinical

    Peter White's conclusion is that CFS is likely to be heterogeneous
    (ie composed of diverse elements) in nature when it comes to
    pathophysiology/causation whereas it is more useful to regard CFS as
    homogeneous (ie of the same kind) when considering treatments.

    PW Conclusion:

    'The reality is that mind and body cannot be divided and illnesses
    such as CFS/ME involve "both", like most chronic diseases. The ME-CFS
    debate may be remembered in future more as one of the tipping point
    for the rejection of Cartesian dualism than for diseases that lie

    What conclusion would be a doctor with no prior interest in ME/CFS
    come away with?

    Had I been a doctor attending this meeting with no prior or
    specialist interest in ME/CFS I would have come away with the
    conclusion that:

    a.. CFS is by far the best name for this illness
    b.. CFS affects both mind and body
    c.. Research criteria for CFS aren't helpful for making a clinical
    d.. The best diagnostic criteria to use for making a diagnosis of CFS
    are those produced by NICE and the RCPCH
    e.. Canadian Criteria are not helpful for making a diagnosis of CFS
    f.. There is a safe and effective treatment for people with CFS:
    graded exercise therapy

    a.. The term ME is best avoided as it refers to an illness with
    neurological signs that occurred in outbreaks some time ago - such as
    the one at the Royal Free Hospital
    b.. Giving people a label of ME, implying a serious and possibly
    incurable neurological disease, is likely to lead to a less
    favourable prognosis
  2. tansy

    tansy New Member

    demonstrates why we need a name change and a more spcific criteria. It is his aim to widen the criteria further on the gounds there are more patients he, and his fellow psychobabblers, can treat successfullu.

    Peter White's beliefs and assertions further domonstrate why many of the chronic fatigue centres in the UK are unsuitable for patients with ME (Ramsay and Canadian definitions).

    The CDC want a similar approach adopted in the US and even provide a link, on their website, to the NICE guidelines.

    Mezombie, and others, are working hard to get the Canadian Definition and guidelines accepted in the US. The account of Peter's White talk above explains why this campaign is so important.

    tc, Tansy
  3. tansy

    tansy New Member

    May be reposted

    RSM CFS Conference: an ETA for webcast
    May be reposted

    RSM CFS Conference update on release of webcast

    This morning (27 June) I telephoned the office of Mr Ian Balmer, Chief
    Executive of the Royal Society of Medicine for an update on the release of a
    webcast of the presentations made at the RSM's CFS conference on 28 April.

    I spoke to Mr Balmer's PA, Ms Joanna Rose, who told me the following:

    That Power Point slides used during the presentations are expected to be
    available from the RSM website from next Monday.

    That a webcast of the presentations is expected to be completed and
    available from the website by the end of next week.

    I asked Ms Rose whether all the presentations would be available on the
    website since there had been some concerns that permission might not yet
    have been obtained from all presenters: Ms Rose advised me that it was her
    understanding that all presentations will be included.

    The page on the RSM website for RSM webcasts is:

    I will update as soon as I can confirm that the Powerpoint Presentations
    have been published.

    Suzy Chapman