Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

(PACE Trial, etc.) Misleading medical research underpins disability cuts - Centre for Welfare Reform

Discussion in 'General ME/CFS News' started by Dolphin, Apr 14, 2016.

  1. Dolphin

    Dolphin Senior Member

    Messages:
    10,680
    Likes:
    28,203
    http://www.centreforwelfarereform.org/news/misleading-mability-cuts/00270.html

     
    L'engle, actup, Woolie and 37 others like this.
  2. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    There's another webpage on their website, that introduces the full report...
    http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html

     
    L'engle, actup, Woolie and 10 others like this.
  3. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
  4. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)


     
  5. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    Fabulous. Especially as it's about the BPS model and benefits, ie a much wider focus than just ME patients, so more people may feel affected / concerned by it.
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    Waited five years for criticism of the PACE trial to take off... now there's so much of it I can barely keep up.
     
  7. actup

    actup Senior Member

    Messages:
    162
    Likes:
    471
    Pacific NW
    Additional insightful commentary by Ysabelle Stewart (I don't do twitter but find threads easy to read) on paper by George Faulkner.


    Following article explains UK government's complicity with disability insurers in long term plan to cut disability payments. Worth a read! http://www.newstatesman.com/politic...changes-government-doesnt-want-you-know-about
     
  8. actup

    actup Senior Member

    Messages:
    162
    Likes:
    471
    Pacific NW
    Do go to actual twitter feed for all all of her comments on topic.
     
  9. JohnCB

    JohnCB Immoderate

    Messages:
    350
    Likes:
    2,566
    England
    I read this through last night. It is about more than PACE. It does cover points about PACE that have been covered elsewhere but not in as much detail. I was a little disappointed that it did not give the credit due to ME campaigners, Tom Kindlon in particular, who did the initial analysis of PACE. Of course this work was done to make everyone aware of what has happened and so it is a good thing that it is getting further coverage.

    What this report does do, and I think does well, is go into the wider background in which PACE is set. It does explain why PACE is such a difficult beast and why simply showing that the science is just plain wrong seems to have so little effect. PACE is presented here as an example, the prime example, of a political/medical process that is happening. Much of the report goes beyond what is covered in the studies we already know well. It is very useful, it is also very scary, from this point of view.

    It is also good to see the work done by Tom, et al, getting wider coverage. It may be part of a process where the work done will get taken up by wider disabilty and political communities who perhaps still think that ME is about being rather tired. If ME/CFS is taken up as a banner in wider campaigns, it could make a huge change to general awareness.

    I recommend taking a look at this report, perhaps even skipping the bits discussing PACE in particular and understanding the wider politics of the CBT and biopsychosocial movements. It does suggest there is some real skullduggery in the background and it would be very interesting if these issues are taken up by investigators who understand the political and medical worlds.
     
    L'engle, moosie, Woolie and 6 others like this.
  10. Dolphin

    Dolphin Senior Member

    Messages:
    10,680
    Likes:
    28,203
    http://www.hetalternatief.org/CGT GET PACE Analyse Faulkner 2016 1331.htm

     
  11. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,387
    Likes:
    8,271
    Thanks.
    I have received quite a fair amount of credit/mentions in the last 6 months or so between David Tuller's articles, comments by James Coyne, etc. which is nice and means I don't worry so much in other situations.

    Three of my pieces are included in the references so I do get acknowledged in a way.

    I'm very glad George Faulkner has gone to the trouble of writing such a piece which must have involved a lot of time and effort. He has explored angles that I have not written formally about.
     
    L'engle, actup, Woolie and 12 others like this.
  12. Dolphin

    Dolphin Senior Member

    Messages:
    10,680
    Likes:
    28,203
     
    Woolie and Bob like this.
  13. medfeb

    medfeb Senior Member

    Messages:
    470
    Likes:
    1,853
    Agree - these parts are well worth reading.
     
    moosie likes this.
  14. Luther Blissett

    Luther Blissett Senior Member

    Messages:
    724
    Likes:
    4,106
    Yorkshire, England
    A nice companion piece from the more sociological side is;

    Illness as ‘Deviance’, Work as Glittering Salvation and the ‘Psyching-up’ of the Medical Model: Strategies for Getting The Sick ‘Back To Work’.

    http://blacktrianglecampaign.org/20...strategies-for-getting-the-sick-back-to-work/





     
    L'engle, moosie, Woolie and 7 others like this.
  15. Freddy

    Freddy

    Messages:
    59
    Likes:
    205
    Simply brilliant! And putting all our experiences in a larger context.

    But I can't help laughing, is the following part of the article not the best irony ever?

    ...For instance, in 2012 Lord Freud defend the 'reform' of Disability Living Allowance in the House of Lords by saying:
    "...we have gone for the biopsychosocial model. That model has now garnered very significant academic support, as those noble Lords to whom I sent that very interesting piece of research will recognise."

    Unfortunately it turns out that the research that Lord Freud refers to is often deeply flawed. ...


    Freud, mhh, I think I know this name...
    No joke, it's the great-grandson of good old Sigmund! :)That made my day!
     
    Last edited: Apr 15, 2016
    L'engle, moosie, Woolie and 3 others like this.
  16. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    I've now read quite a chunk of this report, and... wow, wow, wow, wow, wow... this is an exceptional project...

    It's an impressive report; it's well argued, and its exceptionally well researched, and meticulously referenced. And the author creates a seamless narrative while citing a large number of sources.

    It focuses especially on the corruption surrounding the biopsychosocial model, in a political, historical and academic context. And I've learned quite a lot from it. It illuminated (with a broad context) quite a number of issues that we often talk about, and I found myself saying "aha", "aha", "aha", throughout the text as I recognised behaviours and as the wider context explained much of the behaviour of the psychiatric lobby to me. I found it quite an eye opener. The wider context makes it all seem even more corrupt than I had imagined!

    It raises all sorts of issues relating to: the issue of non-blind trials and subjective outcomes; the biopsychosocial model; bad research practices; false/misleading research results; withholding data; misleading media reporting, etc.; and how PACE relates to these issues. It discusses how the research evidence base for the biopsychosocial model can't be relied upon, because the research is flawed, but that the academic establishment requires it to be artificially propped up because e.g. careers rely on it. To do this, it says that patients are belittled, denigrated and targeted in a campaign to undermine them. It uses PACE as an example for all of these discussions.

    And it discusses the implications of false research outcomes, for patients, social security, the welfare state, the insurance industry and privatization of welfare benefits. It implicates PACE and associated conflicts of interest. And it does so in the context of a history and paradigm of the biopsychosocial model and politics.

    It mentions and references many recent events, such as the FOI tribunal and the latest sympathetic blogs that have been written about PACE.

    It's very interesting and it's clearly written so it's easy to read.. but if you're not up to tackling the full report, it's worth having a quick read of the one-paragraph "About the Author" and "Acknowledgements" at the very beginning. And read the forward and summary if you're feeling more adventurous. The list of references is also interesting.


    Full report:
    http://www.centreforwelfarereform.org/uploads/attachment/492/in-the-expectation-of-recovery.pdf

    The report is introduced, here:
    http://www.centreforwelfarereform.org/library/type/pdfs/in-the-expectation-of-recovery.html

    With a press release, here:
    http://www.centreforwelfarereform.org/news/misleading-mability-cuts/00270.html
     
    Last edited: Apr 16, 2016
  17. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,358
    Earth
    L'engle, moosie, TiredSam and 12 others like this.
  18. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    L'engle, TiredSam, Comet and 5 others like this.
  19. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    From HuffPo:

    This is for the 'recovery' claims in the Bleijenberg and Knoop Lancet commentary, not ones made by the PACE researchers. I think it's probably still okay to say this though. A short piece like this aimed at a general readership could never go into all the details of the different recovery claims.
     
    L'engle, Comet, Sean and 3 others like this.
  20. Bob

    Bob

    Messages:
    9,844
    Likes:
    33,947
    England (south coast)
    I think it applies to the recovery paper as well, Esther. e.g. A patient with an SF-36-PF score of 60 could be classed as 'recovered'.
     
    L'engle, Comet and Valentijn like this.

See more popular forum discussions.

Share This Page