1. Patients launch a $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!
Patient Experience: "What Bronllys taught me about pacing."
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course...
Discuss the article on the Forums.

Psychology Eases CFS new research pub in NY times

Discussion in 'Latest ME/CFS Research' started by taniaaust1, Feb 17, 2011.

  1. taniaaust1

    taniaaust1 Senior Member

    Messages:
    6,754
    Likes:
    3,331
    Sth Australia
  2. It made me cry. Ty for posting this, taniaaust1...I read it but was too sick to figure out the forums to post. Been a long time since I was here.
  3. Mark

    Mark Acting CEO

    Messages:
    4,412
    Likes:
    1,714
    Sofa, UK
    It's lovely to see you again bluebird, even though under such horrible circumstances. I'm close to tears myself, but rage is the dominant emotion right now...there just aren't any words for this...
  4. alex3619

    alex3619 Senior Member

    Messages:
    5,969
    Likes:
    7,837
    Logan, Queensland, Australia
    Hi, even if you are too ill or angry to reply to this article, please recommend the few good articles on there so they drown out the bad ones. Bye, Alex
  5. Grape Funk

    Grape Funk Senior Member

    Messages:
    112
    Likes:
    0
    USA
    This was not the Newcastle study where the university was given 1.5mil pounds, was it?
  6. Grape Funk

    Grape Funk Senior Member

    Messages:
    112
    Likes:
    0
    USA
    After reading the article, i was not nearly frustrated like some would be. Though after browsing through about the first 10 comments, the vexing process started. How ignorant a world can be is a shame. That's how it goes when you only listen to what is preached in the mainstream and where money dominates.
  7. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    72
    Switzerland/Spain (Valencia)
    * them

    Actually the title is quite ok, yes, this may be true for chonic fatigue. But that's not what we (most of us) have. I don't even bother reading it all.

    We have to unite or at least coordinate as well as possible, because united we can stand up to this and counter it. And it might be a good idea to form associations of health professionals and scientists that are knowledgable about CFS and view things in a reasonable way, like ASSSEM in Spain, for example (http://www.asssem.org/). I think doctors and people in politics and the administration might listen to them more than to patients.

    We have to support good research to end all of this crap and if necesary take it to the streets. I know that's very hard to do with our health. The planned demonstration in front of the CDC is a very good idea. Can you copy that in the UK? Let them hear us, until they come to reason.

    I'm sure you can make people realize their symptoms less, if you apply certain techniques to them, but is this the way to go? Certainly not, it only adresses the symptoms and not even in a very succesful way. It's like telling someone with a bleeding wound to ignore the pain. Even if that person could do that, it would not be smart, because the pain is the body's way to tell you something is not right. If you ignore the pain and eventually bleed to death, you're not really helped. Why don't those people focus on what's wrong with us and try to fix it for a change.
  8. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    72
    Switzerland/Spain (Valencia)
    Hmmmm... I think in the UK you really might have a slight corruption problem, didn't two or so years ago a mp use taxpayer money to clean the moat around his manor? :angel: Or another one said something like "i'm like a taxi, you pay and i go where you want me to"...
  9. lucy

    lucy Senior Member

    Messages:
    102
    Likes:
    2
    Yeah, comments make it difficult not to get angry. But who should we get angry at? People are using their brains, where it is written inside "fatigue - you have it if you get tired after physical activities or involvement in mental work. Rest and sleep recommended." Our discussions about the name usually lead nowhere, with good options for a new name, but always stops there. The action should be like this: we finally choose a new name on the agreement by at least X000 patients which excludes the word fatigue, then we use the new name everywhere from now on and change it wherever we have access. We also write to different websites asking to change it until when we google for it, no CFS comes up. Then such comments will not show up.
  10. Snow Leopard

    Snow Leopard Senior Member

    Messages:
    2,166
    Likes:
    1,424
    Australia
    The best way to debunk those comments is to point out the reality - that they are ignorant of the scientific literature.
  11. carol

    carol

    Messages:
    35
    Likes:
    2
    I live in the UK and I feel totally without any healthcare now, completely thrown out of normal society. Totally used by people who know how to manipulate the system and keep cashing in on our misery, and abandoned by the medical profession who are fed up with us. I feel I can't fight back, I am in bed without the ability to mount a media campaign like they can. The cynicism those Dr's have displayed is beyond belief, manipulating the trial to get the result they wanted. What happenned to "do no harm". What is the point anymore Where are the Dr's who believe us. The scientists and media were there to tear holes in the WPI study, why can't the same rigorous annihilation happen to this study? What have we ever done to society that merits this punishment? If they now roll out GET to ALL ME sufferers they will have a medical catastrophy on their hands. Perhaps that is what will have to happen before the truth will out. People will have to die in droves before change happens.
  12. Wildcat

    Wildcat Senior Member

    Messages:
    503
    Likes:
    272
    England
    This is the notorious PACE Trial, the Jewel in the Crown of Professors PD White, Michael Sharpe and Simon Wessely's (psychiatrists) CBT/Graded Exersise agenda.

    The recruitment for PACE started in 2005 and it has cost the British Taxpayers 5% million. The PACE trial was funded by ring fenced Medical Research Council money (taxpayers money) and by the DWP.
  13. Wildcat

    Wildcat Senior Member

    Messages:
    503
    Likes:
    272
    England
    By Anglia ME Action UK via Co Cure
    .

    Anglia ME Action (UK).
    contact@angliameaction.org.uk
    18 February 2011.

    [Permission to repost].

    .

    .
    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."


    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 - copy attached herewith]
    http://www.bmj.com/cgi/content/full/326/7389/595
    http://www.bmj.com/cgi/reprint/326/7389/595


    Read the PACE Trial manuals in the light of Wessely's BMJ words.



    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 available online at:
    http://www.meactionuk.org.uk/Hooper-response-to-PACE-Trial-Press-Release.htm

    Professor Hooper's more detailed critique of PACE/MRC and formal complaint is available at:
    http://www.meactionuk.org.uk/magical-medicine.htm


    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 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 medical specialists, can work to produce such a response.


    Anglia ME Action (UK).
    contact@angliameaction.org.uk
    18 February 2011.

    [Permission to repost].

    ENDNOTES:

    [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
    doi:10.1016/S0140-6736(11)
    60096-2
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/abstract
    http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(11)60096-2/fulltext#
    http://download.thelancet.com/pdfs/...66496:-237c741a:12e382b6f7d:-d641298025501163

    [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:
    www.erythos.com/gibsonenquiry/index.html


    --- ENDS ---

See more popular forum discussions.

Share This Page