A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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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. alex3619

    alex3619 Senior Member

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    I have long been interested in setting up a centralized press release place for the science, a one stop shop that is totally independent of the SMC. A major charity could do this.

    We need to get the scientists and doctors more engaged in education and politics. I understand there are reasons they don't do this, lots of them, but even a little more engagement would help.
     
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  2. alex3619

    alex3619 Senior Member

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    Funny you should use that analogy, I used an iceberg: http://forums.phoenixrising.me/index.php?entries/the-winds-of-change.1597/
     
  3. Dx Revision Watch

    Dx Revision Watch Owner of Dx Revision Watch

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    This is what GPs are being fed in the UK (and it's all about saving the NHS money):

    4 page handout (that had input from Manchester):

    Guidance for health professionals on medically unexplained symptoms (MUS)

    http://dxrevisionwatch.files.wordpr...-for-health-professionals-on-mus-jan-2011.pdf

    ----------------------

    The Mind Body Approach
    - presented at ICAPT research event on 31st July 2012

    ME is mentioned at 3 mins 45 secs in from start - but worth watching the entire presentation, in which Prof Sir David Golberg's BSS (Bodily stress syndrome) is mentioned. (Goldberg chairs the ICD-11 Primary Care Consultation Group.) BSS is currently being field trialled against the S3DWG group's more SSD-like proposals for a proposed replacement for the ICD-10 Somatoform disorders.



    ----------------------

    Page 1 of 3 (but all 3 pages worth a skim):

    Notes from EACLPP Workgroup meeting in Budapest July 2011:

    http://www.eapm.eu.com/tl_files/content/eaclpp/Working Groups/EACLPP_WG_Medically_Unexplained_Symptoms_Budapest_2011.pdf

    All part of the White/Creed/Fink/Henningsen/Goldberg et al push for generalised MUS/BSS/BDS type clinics rather than for specialist service provision for CFS and ME.

    ----------------------

    [​IMG]

    PDF: Pilot of Enhanced GP Management of Patients with MUS

    I put several more new UK MUS/Persistent physical symptoms type pilot trials on my Twitter feed three of four weeks ago.

    I'll be publishing updates on ICD-11 on my site in the next couple of weeks.
     
    Last edited: Sep 6, 2014
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  4. A.B.

    A.B. Senior Member

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    I find it interesting that the BPS model is the exact opposite of what patients and biomedical researchers believe.

    - Patients emphasize importance of rest. The BPS model insists rest is harmful.
    - Patients believe in pacing. The BPS model insists on forced exercise (though GET seems to have somehow morphed into pacing in recent years).
    - Biomedical researchers believe that ME/CFS is a label for several different illnesses. The BPS models lumps IBS, fibromyalgia, CFS, whiplash, and other health problems together, insisting that they are the same condition.
    - Biomedidal researchers believe that there are significant biological abnormalities. The BPS model disagrees.
    - Patients think help from family and friends is important. The BPS model thinks supportive family and friends and family perpetuate or cause the illness.
    - Patients want biomedical research. The BPS model says biomedical research is at best unimportant, at worst harmful.
    - Patients believe lab tests are useful. The BPS model says lab testing is harmful.
    - Patients and biomedical researchers believe it's a real illness (or several). The BPS model says it's a non-illness, the false belief of having an illness.
    - Patients believe the symptoms are caused mainly by a pathological biological process. The BPS model says the symptoms are entirely caused by deconditioning and false beliefs.
    - Patients believe in objective criteria and honest doctor-patient relationships. The BPS model claims that subjective judgement is perfectly adequate, and that lying to patients is good.
    - Patients think ME/CFS is a horrible illness that causes suffering. BPS model advocates seem to believe the illness is so much fun that patients need to be convinced to abandon it.

    etc.

    It's almost as if somebody listened ME/CFS patients and researchers, and then decide to intentionally take a stance that is the exact opposite. The question is why the BPS model advocates operate like this. Is it because they believe that ME/CFS patients are suffering from false beliefs, and therefore anything they do and believe can only serve to perpetuate their false beliefs? Or is it to stall progress? Considering the relationship between the insurance industry and the BPS model, this possibility cannot readily be dismissed. Finally, the last option is that the BPS model is collective insanity.
     
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  5. DanME

    DanME Senior Member

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    I go for collective insanity. ;)

    Their Definition of Medical Unexplained Symptoms is the complete failure of Science and Medicine. As simple as that! Their conclusion, that physical symptoms, which cannot be explained, must be in our minds (which is a joke in itself, because the brain is also physical), is driven by sheer ignorance and the false belief, we know everything, which is to know about the body. And we just don't! I don't know, how a intelligent doctor or a scientist is able to promote such nonsense.

    If we discover Medical Unexplained Symptoms, we have to explain them with proper research and find their cause. End of story.
     
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  6. alex3619

    alex3619 Senior Member

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    I would call it cult-like thinking arising out of logical positivism, or the erroneous belief that you can prove something just by accumulating suggestive facts. There is a big dose of rationalization in there too, supported by confirmation bias. Further this gets supported by similar agendas, political, ideological and economic, including the insurance industry. Companies and interest groups often get behind things that say what they want. This happens in much of society.
     
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  7. Scarecrow

    Scarecrow Revolting Peasant

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    Sorry, but wasn't the point of this thread to generate ideas about how to stop the BPS treatment of patients, not to bemoan the fact that it happens or indeed to discuss the BPS model of ME/CFS?
    @Jonathan Edwards Would you have any objection to having your summaries of the researcher presentations included in a document that could be disseminated to GPs?You could be acknowledged or not as a contributor as you prefer.

    It's a small start but could raise some awareness about where ME research is heading.
     
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  8. Sasha

    Sasha Fine, thank you

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    If I had been a bit more on the ball when I set up this thread I would have requested that we stay pretty tightly on the "how to solve the problem" topic.

    The BPS have done us such damage and there's such a lot to say about the poor quality of the BPS work that it's very easy for any thread to go down either of those routes and not come back.

    But there are plenty of other threads where those things can be discussed (indeed, they can have their own threads set up for them) - I suggest we keep this one focused on the topic in the title.

    No criticism intended - it's just that I want to make sure that we do justice to this important topic.
     
  9. alex3619

    alex3619 Senior Member

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    We do need action. But we can't do it in one thread. What we understand about what is going on and the options determine what actions are desirable. This cannot be achieved without debate.

    The short of it is this. We need to create coalitions. We need allies. We need to separate debate, planning and action.

    Badly thought out action might even work against us. Over complicated action will keep people from doing it. Centralized planning will fail, at least as far as ME advocates - that may not apply to allied groups.

    To really deal with BPS we will need to put our lot in with other groups, non ME groups. Many of them are not sick.

    However too many groups are against bits of BPS, and support the rest. We need to be clear what bits of BPS we oppose, because simply saying we oppose all of it instantly paints us as radicals.

    So we cannot do this in one thread. Period. Nor can we do it in a short time frame.

    However to get things rolling, we could start with the simple and obvious.

    Nobody who is signatory to the CMRC can do much - their hands are tied. So we need other allies. Its all good saying that the mood is different, and we can capitalize on that, but we can't do that via any planned advocacy with them involved. Instead I think we should view this as a sign that others can be reached.

    Most of the support is likely to be outside of the UK. The UK scientific and medical establishments are a lost cause for now with respect to BPS, at least for CMRC members, though in time the research being done may prove crucial.

    I think the CCC/IOM letter is an example of what can be done. We need something short, simple, focused, not detouring into other issues even slightly. Then we advocate for everyone to sign it. I would be very surprised if any member of the CMRC would do so. Yet perhaps they were not the only players at the conference.

    What would that short focused message be? How do we disentangle it? Are we planning a series of letters? How about patient letters in support of our researchers and doctors? All of this depends on what we understand about what is going on, and for the most part we are all on different pages even if its the same book.

    We also need to be thinking about countering the SMC. Its not just about BPS thinking. Similarly there are big failures in EBM. So while we need clear focus on BPS, we need to not be unmindful of other issues.

    This not an easy area to work in. Its messy. Which is why I say we need debate, planning and action to be separated out.
     
    Last edited: Sep 6, 2014
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  10. alex3619

    alex3619 Senior Member

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    So far as I am concerned this is either a debate thread or it will fail, again. A planning thread would be about a single idea, such as a broad coalition, or a doctor and researcher group letter. From each of those planning threads there should be one or more action threads. For example, starting on X/Y/14 we should be trying to contact the people we know and get them to agree to sign a group letter. Here are the steps to do that: A, B, C.
     
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  11. DanME

    DanME Senior Member

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    Hmm, I don't know the exact political situation in the UK or in the US. It is highly confusing, what I got, that some advocacy and charity organisations strictly oppose the BPS and some go partly along.

    I think a compact letter signed by respected doctors and scientist would be a good idea. Fortunately, the last couple of years gave us some hard biomedical evidence for abnormalities in well conducted studies. We should use that. Maybe a letter should explain in a short and precise way those studies and findings (like CPET, Rituximab, Cytokines, Leptin, POTS and OI etc.). The hard part is, that we still don't have a final model of the disease. A lot of speculation wouldn't bring us anywhere. So why not sticking to the hard facts of the studies conducted.

    Another problem is, that all the ME advocacies and patients groups are still divided in their efforts. If we could create an international advocacy site, just for the patients, supported by a lot of different ME groups around the world, we would have an immense resource for future crowd funding and awareness campaigns (I think, Jennifer Brea thought about such a page, if I remember correctly). Imagine such a page would have 20.000 members from all over the world. It would be a lot easier to start new projects. But it seems to be a huge amount of work. On the other hand, crowd funding for medical studies is a completely new idea and it already worked very well.

    The internet is the perfect tool for us. The question is, how to use it in the most powerful way.

    Just some ideas with a huge brain fog.
     
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  12. Sasha

    Sasha Fine, thank you

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    I think that's too narrow an interpretation of the purpose of the thread. The questions raised at the beginning are what should patients, researchers and clinicians do to use what seems to be a new level of agreement among researchers that we have a serious organic disease to now push for the cessation of treating us as though we have a psychosomatic one.

    It's fine to debate what to do. It's not a planning thread, because we don't yet have a plan. I see it as a thread for coming up with a plan (or several). That's my interpretation of @aimossy and @justy's posts (which were the basis for starting the thread). Each plan could then have its own thread, if we get that far.

    I'm all for debate - but the two things that I don't see as productive in this particular context are reiterating our unhappiness about the BPS (we're all already agreed on it and once that line starts up it tends to gather steam and distract from the topic at hand) or discussing the detail of what is wrong with the science and logic of the BPS model (ditto). I think it's fine to talk about those if they are directly relevant to coming up with a plan but otherwise, I think they're off the topic of the thread.

    How does that sound?
     
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  13. alex3619

    alex3619 Senior Member

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    I have no problem that this thread is not about exploring being unhappy with BPS. However to define an action we need to define the issue. That means we need to have some basis in understanding of the issue. In my current view its very easy to go after the wrong goals, but figuring out the right goals is a tough challenge. I still think we need three levels, if not more. Debate, planning, execution.

    For example, are we against all BPS?

    Are we against just psychogenic claims?

    Are we against just psychogenic interventions for ME alone?

    Are we just trying to promote a particular viewpoint of conference attendees. If so, then with whom? Given they (CRMC anyway) are in agreement to not engage in advocacy against peer reviewed research, what does this mean for any advocacy on our part?

    Picking a less desirable or less effective target may just derail our efforts. Once we have a target we can be more specific about what we want to achieve, and then how to achieve it.
     
  14. Scarecrow

    Scarecrow Revolting Peasant

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    There's no such agreement. The CMRC Charter contains no 'gagging clauses'. It does not stifle criticism of research. It prohibits the harassment and abuse of researchers.
     
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  15. alex3619

    alex3619 Senior Member

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    @Scarecrow, from your own post elsewhere:

    I am presuming this is accurate for now. What I disagree with is that action by advocates against psychogenic intervention will not be interpreted as an attack on researchers, by those specific researchers using the methods we will object to. Technically it is not, but this is political as much as anything. I strongly suspect that it will be claimed that any action is a veiled attempt to attack researchers. Look at what claims have already been made. Given that, what impact will this have on CMRC signatories? Not what is technically involved, but what is perceived to be involved? Further, what kind of pressure will they be under?

    To be fair though our docs and researchers are already under pressure even without the CMRC. An additional layer of complication may not matter a whole lot.

    To be clear though, I am not against approaching CMRC signatories for their take on things, to find out where we are. My position is this needs more debate, and in particularly it needs consideration of contingencies. It needs more investigation, including contacting various researchers and doctors. We are still operating in the dark.

    I would suggest one of our first goals should be to contact some key players in the CMRC and find out what they think about these issues.

    Dealing with this is one of the reasons I wanted to emphasize defining the question and scope of action so much. The wrong scope will detract from our efforts, while the right scope may assist us to gain support.

    Under my own interpretation of clauses 3.1.3 and 3.2.3 I would be happy to sign up to that myself. Yet I strongly suspect that even my own actions to date would be considered by some to be in violation of both clauses. Its a question of interpretation, not just technical interpretation but political interpretation.
     
  16. Scarecrow

    Scarecrow Revolting Peasant

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    :thumbsup:
     
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  17. alex3619

    alex3619 Senior Member

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    Some consensus indicates a possible goal. :) What do others think?
     
  18. chipmunk1

    chipmunk1 Senior Member

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    According to this document 25% of patients in outpatient care and almost 50% of outpatient hospital referrals are SOMATIZERS!

    and their proposed solution for this huge problem(as written in the document) LOVE, EMPATHY, SUPPORT, HOPE.

    (Instead of SCIENCE, RESEARCH, TESTING, SPECIALIST CARE)

    It looks like medicine is in big trouble when they cannot figure out or fix 50% of cases. Apparently out of desperation the solution is now love, hope and denial.
     
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  19. Sasha

    Sasha Fine, thank you

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    I think the first two are beyond the scope of this thread, which concerns how to stop ME being treated as though it's a psychogenic disorder, both in terms of public perception and of treatment. I'm not blind to the fact that the issues are related but to mount a campaign against the first two issues (even if you could get agreement on them, which is doubtful) would be the work of years of debate and alliance-building. If we go down that route of discussion, we'll cripple discussion of any plan for PWME that could lead to achievable action within any acceptable timeframe (which is months, not years).

    Like Scarecrow, I disagree with your interpretation of the harassment clause. If a BPS psychiatrist wanted to go after a group of scientists making public objections to his/her science in a public, scientific arena on the basis that it was "harassment", then great - that psychiatrist will make themselves utterly ridiculous and strengthen our position.

    But this is not necessarily an issue for the CMRC to advocate on (it wouldn't be able to put out a unified position on this so presumably couldn't issue a statement on behalf of the CMRC). It's more broadly an issue for researchers, clinicians and patients - perfectly possible to form an ad-hoc group like the scientists against the IOM contract did.
     
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  20. Sasha

    Sasha Fine, thank you

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    As I said, we can't expect the CMRC to issue a joint statement unless it's unanimous. I don't see the CMRC as being the ones to act here, but individuals forming an ad-hoc group (which could include CMRC members).
     
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