Black Day for PWME in the UK and Globally

Discussion in 'Fibromyalgia Main Forum' started by tansy, Feb 18, 2011.

  1. tansy

    tansy New Member

    Yesterday the results of the heavily criticised PACE trials in the UK were published. The media headlines were misleading and the study weak, but that won't stop many, including health professionals, assuming that all we need to do is exercise more.

    The Pacing was their own form of Adaptive Pacing that makes no allowances for bad patches, ie patients have to carry out an agreed level of activity regardless of whether they're having a good or bad day. There is no description of what traditional treatments were given.

    PACE used the Oxford Criteria so anyone with higher than normal levels of tiredness or fatigue would qualify but then went on to claim their particular form of CBT and GET was a successful treatment for ME and CFS.

    There are valid concerns of a knock on effect globaly.

    This is just one of yesterday's newspaper reports.

    and this is from the BBC's website
    [This Message was Edited on 02/19/2011]
  2. tansy

    tansy New Member

    In one of the comments below the report on the PACE trial in The Guardian it was pointed out that the Newcastle CFS Service found 53% of the patients referred in a 14 month period had been mis-diagnosed (J.Newton et al)
    [This Message was Edited on 02/19/2011]
  3. 3gs

    3gs New Member

    Hi tansy

    They are never going to "get it" until they get this dd them selfs. The level of ignorance in this day and age is shocking.
  4. TigerLilea

    TigerLilea Active Member

    Hi Tansy - This story was also reported here in Canada; yesterday on the CBC television, and then today in the newspapers. I'd say that 95% of the time when a story includes CBT and GET, the story originates from the UK.
  5. tansy

    tansy New Member

    Hi 3gs. Anyone with an invisible illness is always going to have a degree of difficulty even with medical professionals. I have found some people can take the consequences of these DDs seriously even though they've not experienced them personally, it's the ignorant know it alls who tend to be the worst.

    The Wessely School, and their colleagues worldwide, have been able to take advantage of the political climate and they have well documented links with the Insurance Industry. When a former UK govt minister decided the way to cut back on state payments to the chronically sick and disabled was to involve the Insurance Industry they opened the door for the Wessely School, the rest, as they say, is history.

    Yes I agree, the level of ignorance today is shocking.
  6. tansy

    tansy New Member

    Hi Tigerlilea. The UK and The Netherlands are probably the worst. Gijs Bleijenberg and Hans Knoop, from The Netherlands, authored the editorial in the Lancet. They work along the same lines as the Wessely School and claim and very high level of success for their own CBT and GET programmes.

    Unfortunately what the Wessely School do and write influences attitudes in other countries too.

    What this expensive trial highlights most of all is the need for a clearer and tighter definition. The Wessely School, and their supporters, have muddied the waters to such a degree that every published paper needs to be read with a critical eye. Unfortunately many medical professionals and journalists take what they see at face value.

    [This Message was Edited on 02/20/2011]
  7. tansy

    tansy New Member

    It would appear the CEO of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, Kim McCleary, feels treatments like those used in the PACE trial should be made widely available in the US too.
    Thanks Simpsons for posting this on another thread.

    I have nothing against CBT, or similar therapies, if patients feel it would help them cope when it's delivered by health professionals who understand the illness as described in the Canadian Criteria and Guidelines.
    [This Message was Edited on 02/20/2011]
  8. tansy

    tansy New Member

    The headlines in many of the UK newpapers were very similar, this is because they got their information from the Science and Media Centre. Simon Wessely is a member of the centre's advisory panel.

    In the Daily Mail today a recent comment (#174) stated the press release did not reflect the full study, others have pointed this out too. So it's more of the same old spin.
    [This Message was Edited on 02/20/2011]
  9. slowdreamer

    slowdreamer New Member

    Hi Tansy,
    Bouquets to you for all your good work..
    The pace trial report appeared in a Guardian equivalent paper here in Oz at the weekend'
    i have written to the paper challenging them to do a bit of investigative journalism .
    Who knows but for now i am switching off..I admire what you do but I refuse to focus on this latest example of stupidity and abuse of a community of very unwell people.

    I agree the diagnostic problem is glaring and I believe intelligent independent minded researchers will realize that..I don't think the politics are as bad here as in U.K. Figure here in Victoria Oz suggest that doctors are misdiagnosing Cfs about 50% of the time..
    Yes they are calling CFS depression and hence the muddlement of treatments.!!
    Take care Tansy
  10. tansy

    tansy New Member

    Hi Slowdreamer. This scandal needs to be exposed worldwide if things are to change. It reflects badly on the science community as a whole so they should be the ones challenging it's discrepencies.

    Yep 50% sounds about right, bad news for PWME and those patients who have other conditions that need to be treated properly.

    Take care Slowdreamer and thanks.
  11. tansy

    tansy New Member
  12. tansy

    tansy New Member

    Collective International Professional Response to PACE Required? Feel free to REPOST this to proffesionals and campainers.

    Dear All,

    I write in response to the just-published results of the UK MRC/DWP-backed PACE Trial on 'CFS/ME' in The Lancet[1]. Which, amidst controversy and formal complaints to UK Government Ministers and the Medical Research Council claims that: "CBT and GET can safely be added to SMC [Standard Medical Care] to moderately improve outcomes for chronic fatigue syndrome, but APT [Adaptive Pacing Therapy] is not an effective addition." The full pdf version of the published Lancet PACE Trial paper is attached herewith.

    Apart from rightly raised concerns about methodology, patient selection criteria and conflicts of interest, in my view, essentially what Professor Peter White et al have done with the PACE Trial is conflated two diseases that the WHO rightly categorises separately - neurological 'ME/PVFS' (ICD-10-G93.3) and psychiatric 'Fatigue Syndrome' (ICD-10-F.48.0) - and misrepresented the latter as the former.

    The PACE Trial is thereby an effective response to Professor Simon Wessely's call for such an approach in his article in the British Medical Journal back in 2003 - where he misrepresented WHO ME/PVFS taxonomy as merely the patients' own "lay label" and then advocated tactics of what he called "constructive relabelling" to humour and mislead patients whilst advancing a questionable psychiatric agenda:

    "Our challenge arises when patients have named their condition in a way that leaves doctors uncomfortable, as occurred with chronic fatigue syndrome. It may seem that adopting the lay label endorses the implicit causal theory and reinforces perceived disability. For better or worse, the medical profession has lost the monopoly on naming conditions, and rejecting lay terms can needlessly alienate patients. A compromise strategy is "constructive labelling," expanding on the lay name. It would mean treating chronic fatigue syndrome as a legitimate illness, acknowledging that it may have a viral trigger (as many patients report), while gradually expanding the understanding of the condition to incorporate the psychological and social dimensions." ['Managing patients with inexplicable health problems.' Simon Wessely, Baruch Fischhoff. BMJ 2003;326-595-7. doi:10.1136/bmj.326.7389.595]:

    Read the PACE Trial manuals in the light of Wessely's BMJ words and ask yourself if the inherent misleading and manipulation of research subjects described therein should have passed genuine scientific ethics standards:

    At the request of many beleaguered ME patients, Professor Malcolm Hooper has bravely laboured to expose what he identifies as serious scientific flaws in the PACE Trial and the MRC approach. His brief and erudite response to the PACE/Lancet press-release is attached herewith and available online at:
    Professor Hooper's more detailed critique of PACE/MRC and formal complaint is available at:

    The UK National Institute for Health and Clinical Excellence (NICE) have already said that they will review their 'CFS/ME' Guideline 53 when the PACE Trial is published: having previously refused to do so on the basis of biomedical research evidence presented to them - even though the Guideline was due for a scheduled three-yearly review last August. With the published PACE Trial results under their belt, NICE are widely expected to firm-up their behavioural guideline and make it harder for doctors to treat 'CFS/ME' patients in any way other than with CBT/GET in spite of growing international evidence contraindicating such an approach.

    Their is also concern of serious conflicts of interest at the UK Department of Work and Pensions (DWP) who part-funded the PACE Trial. Like the permanent health insurance industry, the DWP has a potential financial vested interest if patients' disability can be portrayed as caused by or largely exacerbated by behavioural factors. Thus the UK parliamentarian Gibson Group on the Scientific Research into ME rightly warned in its 2006 report:

    “There have been numerous cases where advisers to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical ‘expert’ in a field of high controversy requires a different methodology of benefit assessment.” [2].

    Such is the broad establishment head of steam supporting insurance-industry-linked psychological approaches to misrepresented patients with the neuro-immune disease classified by the WHO at ICD-10-G93.3 (ME/PVFS), that the PACE Trial results are likely to have a major adverse effect upon such patients around the world as well as in the UK. I believe therefore that a considered collective professional response to the PACE Trial from biomedical ME specialists and interested professionals/academics around the world is urgently needed: a joint statement or joint academic paper condemning what amounts to an abuse of both scientific process and international medical taxonomy. I hope that the ME community, together with responsible professionals, can work to produce such a response.

    Anglia ME Action (UK).
    19 February 2011.


    [1] Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial
    Professor PD White et al. The Lancet, Early Online Publication, 18 February 2011

    [2] Page 30 - The Report of the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into Causes and Treatment. November 2006.] At the GSRME House of Commons Website:
  13. tansy

    tansy New Member
  14. tansy

    tansy New Member

    As published in the Guardian today.

    LetterME – the truth about exercise and therapy

    The Guardian, Thursday 24 February 2011

    Article history. Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley (Report, 18 February) writes that patient groups "insist it is a physical disease, which probably has a viral cause".

    Research co-funded by The Young ME Sufferers Trust and published by Dundee University last year revealed abnormalities in children's blood consistent with persistent viral infection. The trust deals with childhood cases so severe that sufferers cannot swallow and have to be tube-fed. Too weak to walk, they need to be carried and suffer unbearable neuropathic pain.

    Professor Malcolm Hooper points out that the World Health Organisation classifies ME as a neurological disorder but that the PACE researchers selected patients on criteria that exclude neurological disorders. They claim that graded exercise therapy (GET) and cognitive behaviour therapy (CBT) promote recovery. However, in the latest study of GET and CBT for people with chronic fatigue syndrome, researchers concluded that the treatment resulted in worse physical function and bodily pain scores (Clinical Rheumatology, 15 January 2011). In the practical experience of the families we help, we found children's symptoms are exacerbated with GET, and a period of extended convalescence is needed to enable their strength to return.

    In 2010, we were honoured to receive the Queen's Award for Voluntary Service (the MBE for volunteer groups) and we feel it important that we distance ourselves from comments in the article by the Association of Young People with ME, calling for the PACE trial to be replicated in children. Such misguided views have already caused too much distress to patients and families.

    Jane Colby FRSA

    Executive director, The Young ME Sufferers Trust
  15. tansy

    tansy New Member

    When Misguided Doctors Can Do More Harm Than Good.

    [This Message was Edited on 03/01/2011]
  16. simpsons

    simpsons Member

    very well worded by the wpi

    we are lucky enough to have me research uk fighting for the children with recent studies showing infection in children and the work they have done on the heart along with invest in me are doing working in co ordination wpi so we can get correct research and testing done in the uk to work and provide evidence against the wessely and ester crawley school also the stirling work that Tymes trust do for children standing up against the ayme.

    It s now even more important than ever that we combine our efforts worldwide on me awareness day and throughout the month to raise awareness and educate

  17. tansy

    tansy New Member

    Hi simpsons. We are lucky to have them working hard on our behalves and demonstrating ME is not learned sickness behaviour.

    Our biggest challenge is getting the Govt to take them, and the patient organisations who genuinely represent PWME, seriously. AfME and AYME have made doing so very difficult.

  18. tansy

    tansy New Member
  19. simpsons

    simpsons Member

    yes some good publicity for me awareness day this year needs to be done, the invisable need to be made visable and the science based tests that show the persistant infections and other tests that show illness.

    in fact i believe that a month long campaign is needed. its hard with the science media and prof w and his control but it can be done.

    the australian me.cfs is a good press release and the tymes trust will fight hard,

    charles shepherd needs to write up his research surveys into a paper to be released with such large no s taking part

    again fund raising would be easier if we could get some good pr this year, last year there was some big news that drowned out me awareness day in the uk

    i wonder when the research that judy and annetter spoke of at christmas will be released,

    afme must change the patients who belong to this group should withdraw their funding by stopping membership but many are unaware of how they are being betrayed

    trudy chalder ayme should learn some basic science as it is criminal that she is medical advisor for a childrens charity. ester is the new wessely

    i note a recent article about ester ranson and her daughter who has if my memory serves me right has now been dx with celiac so her claims that lightening process cures ME are ridiculous and shamefull that she never had her daughter tested for celiac until now

    science and the facts are the way forward,

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