Julie Rehmeyer's 'Through the Shadowlands'
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How can we get the new biomedical consensus to stop the BPS treatment of patients ASAP?

Discussion in 'Advocacy Projects' started by Sasha, Sep 5, 2014.

  1. Sasha

    Sasha Fine, thank you

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    @justy (and @aimossy) raised this crucial question on the "science" CMRC conference thread. The conference was hugely successful in the dominance of biomedical research and a strong consensus that ME is a serious organic disease.

    This topic needs its own thread so I'm copying posts over. I hope people will pick up the discussion here (the original thread is intentionally quite narrowly focused on a discussion of the science).
     
    Last edited: Sep 5, 2014
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  2. Sasha

    Sasha Fine, thank you

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    Last edited: Sep 5, 2014
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  3. Sasha

    Sasha Fine, thank you

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    Last edited: Sep 5, 2014
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  4. Sasha

    Sasha Fine, thank you

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  5. Sasha

    Sasha Fine, thank you

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  6. Valentijn

    Valentijn Senior Member

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    Maybe if patients start suing their past and present BPS practitioners (AND their institutions) for negligence, malpractice, intentional infliction of emotional distress, any financial or physical harm done, etc?

    They call themselves experts, and there's an abundance of medical literature proving that their approach is wrong and even harmful.
     
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  7. Sasha

    Sasha Fine, thank you

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    @Jonathan Edwards - @aimossy asked you earlier what patients could do to capitalise on this strong biomedical consensus which is new for the UK, and you responded, but @justy is raising the important question of what scientists can do.

    She's right - scientists, not patients, have the clout and the access to decision-makers. What should our scientists be doing, bearing in mind the damage being done to patients right now by the BPS school?

    It shouldn't be necessary to wait until we have new treatments. New treatments aren't the issue with this particular question - it's stopping this harmful treatment as soon as possible that's important right now, before other PWME have their health irreparably damaged by it. Changing public perception of our disease as soon as possible is also enormously important, both to remove the terrible burden of the stigma that we live under and to get them to start donating money to our research charities.
     
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  8. Daisymay

    Daisymay Senior Member

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    Sasha said:

    Absolutely, but the only way this will happen I think is through the scientific community speaking out. Patients have been so effectively vilified by the psychiatrists and SMC we are not listened to. This needs the authority of the research community to come together to speak out in our defense.

    When you think about it, the psychiatric hold on this disease is much more tenuous than we may think. It is completely dependent on the medical professions/public being kept unaware of the existence of the biomedical research, research which invalidates their view.Successfully inform the medical profession/media of the scientific evidence and the psychiatric paradigm should fall.
     
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  9. OverTheHills

    OverTheHills

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    (my bold)

    We patients have the numbers to support said scientists to do that with press releases etc (either through the charities or virtual organisations like PR). The scientists would need to be prepared to 'rock the boat' of the convenient (for the Establishment) consensus, it would not be risk free for them.
     
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  10. Kati

    Kati Patient in training

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    Would a press conference talking about the conclusions of the conference that just happened be appropriate? Since the majority of the scientists there agreed, then it is time for the world to know.

    This would likely put the Science Media Center in an uncomfortable position considering who is leading the show, however it is time to put them to the test and to see if the empereur has clothes or not. There are a few journalists who could help us (Sonia Poulton being a potential one for instance)
     
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  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    I looked into press release, and the usual way to do it is to pay a wire service hundreds of dollars. This is not impossible, but it is not simple.

    Alternatively, it seems some have had limited success emailing releases directly to news stations. This is a "put in lots of effort and hope for the best" method.
     
  12. Kati

    Kati Patient in training

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    It is an opportunity for the attending physicians and the charity hosting the conference to shine. The window of opporitunity for this is quite narrow, but it has the potential to be powerful. There are not many of them in the UK, just saying.
     
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  13. alex3619

    alex3619 Senior Member

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    I have been having this debate on a private FB forum. In particular I have been trying to develop an action plan.

    There are two parts. The first is this is NOT just about ME. Psychogenic claims and interventions are an issue globally with many groups. We need an ME-independent advocacy group that links to professional organizations trying to make a change.

    The second is that we already have a model for what to do. The expert letter on the CCC and IOM issues is a guide. If we can make a very brief, and I mean VERY brief, focused letter, not diverting to other issues, and then advocate to get every doctor and scientist we know, especially if we know them personally, to sign it, then we will have a powerful advocacy tool.

    Do expect the scientists and doctors may want a different letter. This is about galvanizing them to action, not dictating that action.

    Individual legal action is an option, but its a long rocky path.
     
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  14. user9876

    user9876 Senior Member

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    One of the big issues is the overall attitudes of the medical community (often GPs) who encounter ME but don't have a huge interest or time to dig into the research. In the past they have probably seen the odd thing about CBT and GET.

    So one thing that would be good is an article about recent research directions in something like a GP's magazine. It would take someone who is good at writing about this stuff to do and perhaps some experts names to help get it in and be seen as a serious article.

    I think there needs to be a long process of drip feeding interesting stuff to a wider medical audience than just the research community so that when breakthroughs are made they are widely accepted.
     
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  15. Sasha

    Sasha Fine, thank you

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    I agree - that's an excellent idea.
     
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  16. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    Another paper out of Manchester around primary care dx, which includes some of the researchers from the FINE Trial.

    Full text, here:

    http://www.biomedcentral.com/1471-2296/15/44

    Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies

    Kerin Bayliss, Mark Goodall, Anna Chisholm, Beth Fordham, Carolyn Chew-Graham, Lisa Riste, Louise Fisher, Karina Lovell, Sarah Peters and Alison Wearden

    "In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of the biomedical model needs to be recognised. A more flexible bio-psychosocial approach is recommended..."

    and another recent one from Alison Wearden (again, full text):

    http://psycnet.apa.org/journals/hea/33/9/1092.pdf&uid=2014-35249-003&db=PA

    The impact of significant other expressed emotion on patient outcomes in chronic fatigue syndrome.
    Band R, Barrowclough C, Wearden A.

    This "over-involved" "significant other" is off to express some emotion...
     
  17. A.B.

    A.B. Senior Member

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    That is some psychiarrhea. Irrationality and passive-aggressive behaviour masquerading as "evidence based" treatment and helping patients. How can these people be so out of touch with reality?

    How can mentally sane people:

    1. Question the biomedical model because it lacks objective tests to identify some pathologies.
    2. Present the biopsychosocial model as better alternative despite it lacking objective tests for every single condition it claims to be relevant for.

    Absence of evidence is not evidence of absence (except in psychobabble land apparently).

    Patient-doctor relationships are only poor due to psychological interpretations in the first place.

    And lying to patients won't make things any better.
     
    Last edited: Sep 6, 2014
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  18. chipmunk1

    chipmunk1 Senior Member

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    Psychholes can do anything they want to do..
     
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  19. biophile

    biophile Places I'd rather be.

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    Here is a re-write:

    "In order to address barriers to the diagnosis and management of CFS/ME in primary care, the limitations of [the severe lack of funding to the] the biomedical model needs to be recognised [addressed immediately]. A more flexible [The limitations of the] bio-psychosocial approach is recommended [must now be recognised] ..."

    Failing some major breakthrough in etiology or treatment, or a massive scandal which puts intense media attention on the problems with the current practices of psychosomatic/psychological medicine, there isn't going to be a silver bullet solution to our problems. It is more akin to changing the direction of a huge oil tanker.
     
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  20. Roy S

    Roy S former DC ME/CFS lobbyist

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    I'd say admirably involved significant mother.
     
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