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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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    My suggestion and your analysis are completely compatible. However if CMRC members almost universally wont get involved, then we face a whole different issue. We need information, the kind that we wont find through debate or scouring the literature. If we don't ask questions then we are relying on luck.

    I do not now, nor for the future, envisage a useful joint CMRC statement. I don't think its possible currently, though things might change.
     
  2. Sasha

    Sasha Fine, thank you

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    I think we're in agreement then - and I don't see any reason why CMRC members wouldn't get involved.
     
  3. Sasha

    Sasha Fine, thank you

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    BTW, if there comes a point at which a private thread becomes necessary, it's possible.
     
  4. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Haven't read all messages yet as brain fog has set in and I can't hammer any more info into my brain, so I will just post the results of my ponderings:

    • Class actions? (I have a feeling that these have been tried before without much success - may need better planning)
    • Press releases - I see no reason why a lot of money or a 'wire service' would be needed. Newspapers print press releases from charities, so how about one from a good ME charity or group/collaborative? Also, I have been a voluntary press officer for a small local branch of a couple of national organisations, and my press releases were frequently published verbatim in local papers, which have a wide readership locally.
    • Getting a prominent campaigning journalist on our side could make a huge difference. Who/how?
    • Consumer and current affairs/investigative journalism programmes (radio and TV) may be good places to pitch subject suggestions. They may be more successful if pitched by someone with authority and expertise, but clearly some such people cannot do this for professional reasons
    • Is it best to focus on discrediting CBT/GET or promoting the good biomedical stuff? I think the latter, with a brief but powerful reference to the former
    • Is it best to stick to ME or combine with other illness groups? I think the former, as I think the focus should be on promoting the proper medical evidence, the speed at which things are progressing (a new paradigm will be attractive to the media, as they love to be the first to reveal things - but it must be simple enough for them and the public to pick up easily and have the 'Wow' factor), etc. We are a huge patient group - easily big enough for this to be a big issue. Hopefully our action will also help others harmed by psychotwaddle, as the BPS sandcastle crumbles.
    • Editors/journalists/readers who want to learn more can follow links that we provide, as is common on newspaper websites
     
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  5. worldbackwards

    worldbackwards A unique snowflake

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    Given the intrusion of BPS into the UK Department of Work and Pensions on a massive scale, and the resultant chaos and misery that has been caused, could this be somehow harnessed to our benefit? The reality is that it isn't just 'people with unexplained symptoms' anymore - there's a lot of people out there who probably don't even know who and what their enemy is.
     
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  6. alex3619

    alex3619 Senior Member

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    That is why I talk of scoping. There are two issues here. The first is BPS models of ME, the second is BPS in general. BPS is looking very much like the new Eugenics. The principles are sound, the outcome is approaching genocide. We will eventually get somewhere based on biomedical science advances, but BPS will go on unhindered. Psychogenic claims have been proven wrong again and again. Even if we get them to ignore ME then they will still go on with some other groups.

    These points are in part why I keep emphasizing finding allies. We can fight this alone, but we may have orders of magnitude more impact in the medium term with other groups fighting with us. Fighting for biomedical funding is an ME thing. Fighting to stop dangerous BPS ideologies is global.
     
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  7. A.B.

    A.B. Senior Member

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    That is a very good point. Since the BPSM claims to be relevant in so many conditions, I can imagine there are other patient groups that dislike the BPSM and would love to see it disappear forever. And there are going to be doctors and researchers who will oppose the BPSM for ethical and scientific reasons.
     
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  8. Snowdrop

    Snowdrop Rebel without a biscuit

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    "Let's do it!"
     
  9. alex3619

    alex3619 Senior Member

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    :) Maybe a separate thread to discuss how this is done? I am exhausted just now and might start one later, but if anyone wants to start one then please do. Something like: "Allying with other opponents of inappropriate use of BPS"

    For anyone who is unaware of the issues, may I suggest my three part blog on BPS for some background:

    http://forums.phoenixrising.me/inde...e-and-fall-of-the-biopsychosocial-model.1075/
    http://forums.phoenixrising.me/index.php?entries/the-fall-of-the-biopsychosocial-model.1081/
    http://forums.phoenixrising.me/index.php?entries/part-three-what-next.1099/
     
  10. chipmunk1

    chipmunk1 Senior Member

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    i feel that many BPS babblers are now approaching their sixties or are already in their sixties. see per fink, wessely etc.

    This was the generation of children that was born at the height of the psychoanalysis bubble in the fifties and many got exposed to that kind of ideas relatively early. Maybe the problem will solve itself at least partially on it's own when this generation retires. The positive thinking movement has unfortunately borrowed many of their ideas and will probably continue with it...
     
  11. alex3619

    alex3619 Senior Member

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  12. worldbackwards

    worldbackwards A unique snowflake

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    I want to see that on a T-shirt.
     
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  13. chipmunk1

    chipmunk1 Senior Member

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    I have a few more:

    1. I was told:"People who live in glass houses should not throw stones.". If this is true why do Psychobabblers talk so much about cognitive distortions?

    2. Hope for the best, but prepare for Psychosomatics.

    3. The Freud is dead long live the Freud.
     
  14. A.B.

    A.B. Senior Member

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    I think we should be against all BPS. Outside of the ME context, BPS isn't quite as harmful, but it's still pseudoscience that delays research and treatment because it claims to explain illness with psychobabble. Its founder, Engel, claimed was as a science that should complement medicine. But it's not a science without hard facts. He also claimed it would overcome mind-body dualism, but to me it seems that it promotes mind-body dualism, as seen by all the psychological treatments for various unexplained symptoms (IBS, etc). This idea is simply used by the psych lobby to claim relevance in just about every condition!

    If we don't oppose it, the things that have happened to ME patients will inevitably happen to some other patient group. So I think we should opposite it on ethical grounds.

    But we should focus on the worst parts of the BPS.

    The central theme is that BPS is simply unscientific and based on consensus rather than facts. It resembles a cult more than science. The science it claims to be based on is of unacceptably poor quality. In particular, we should demand that studies which are used to decide policies should be based solely on hard objective outcomes. If an intervention doesn't lead to significantly greater ability to work, study or generally function normally in life, then it doesn't work.
     
    Last edited: Sep 8, 2014
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  15. Snowdrop

    Snowdrop Rebel without a biscuit

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    Or . . . Who let the Psychs out? Who...who...who
     
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  16. A.B.

    A.B. Senior Member

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    If we want other patient groups, doctors, researchers and even other psychiatrists and psychologists to join us in a campaign against the BPSM, then we need to formulate a clear message that all these groups can get behind.

    That message could be the massive, excessive proliferation of psych diagnoses.

    As ME/CFS patients, a lot of our problems wouldn't exist if there weren't a few psychiatrists who stubbornly claimed this was a psychosomatic illness. Coincidentally, they also came up with very permissive diagnostic criteria, and claimed that the neurological illness ME, as recognized by the WHO, doesn't even exist.

    Other people will be concerned about the excessive prescription of psychotropic medication, which are also a symptom of the proliferation of psych diagnoses.

    This is only possible because the standards of evidence are so low, subjective, and the diagnostic criteria so permissive.
     
    Last edited: Sep 8, 2014
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  17. DanME

    DanME Senior Member

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    We should definetly throw at them all their failures in modern medicine.

    Rheumatoid Arthritis = vegetative Neurosis. Nope, autoimmune disease. Failed!
    Atopic dermatitis = vegetative Neurosis. Nope, hyperactive alergic reaction with a genetic component. Failed!
    Gastric Ulcera = Stressfull life, coffee and nicotin. Nope, it is caused by a bacterium called Helicobacter pylori and sometimes drug abuse. Failed!
    Parkinson = A special form of Neurosis. Nope, it is the cell damage of dopaminergic neurons in the brain stem! Failed!
    Asthma = vegetative Neurosis (of children). Nope, chronic inflammatory disease, triggered by alergens and infections. Failed!
    Chron's disease = vegetative Neurosis. Nope, autoimmune disease or disfunction of the innate immune system. Failed!
    Hypertonus = Stress, Work/Life Imbalance. Nope, huge part genetics and eating behaviour (sometimes Stress driven). Failed!

    I could go on and on and on...
     
    Last edited: Sep 8, 2014
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  18. catly

    catly Senior Member

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    I've only half followed this thread but something that came up at the Medx conference over the weekend just spured at thought. What if we created a way to make it easy to send thank you letters, emails, facebook likes, tweets in response to published reasearch and/or articles from scientists/researchers/journalist that support a biological basis of this illness AND send a copy of that positive feedback to a "list" of those who foster the psycho babble BS perspective (PBBS)? In addition, if we came up with a easy way to send our "disapproval" to new research that promotes the PBBS, through above means?

    I guess the hard part would be identifying a group to help "vet" the research/articles and render an overall opinion on it's significance for advancing biological basis of ME and potential for treatment. Then maybe others could help to direct the response along with the creation of lists and contact information for those we want to thank and those we want to copy. .

    More and more institutions have facebook and twitter accounts and administrators. I know a lot of people are not comfortable with social media based modes of communications but they are becoming the norm and are much easier than traditional more formal channels. They are "ME friendly".

    Just a thought, take it or leave it, but another take away from the Medx conference and 21st century cures initiative led by US congress, is that medicine is "changing" (OK when isn't it), but the new "buzz" is that the patient voice is starting to take hold and "personalized medicine/patient centered care" is replacing "evidenced based medicine".

    Again, just some thoughts. I'm pretty new to this very controversial disease and just wanting to help, if possible. My expertise is more around the delivery of healthcare and not the science. There are much more knowledgeble minds on this forum when it comes to the science.

    OK just one final afterthought in response to one the above comments regarding psychobabble researchers reaching retirement age--that may be true for some of the historic ME promulagtors of the PBBS school of thinking but if you think that line of thinking is going away, you need to rethink that idea. If anything it's getting worse overall, for everything, not just MECFS. Insurance companies, gov.programs and even healthcare providers are hot on trying to defer costs and "difficult" patients to "behavioral care".
     
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  19. biophile

    biophile Places I'd rather be.

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    A BPS framework is supposed to be integrative and cover all aspects of care, but much of the apparent success of the imbalanced bioPSYCHO(social) flavour applied to ME/CFS seems to be propped up by spin and appeals to authority, and like a spinning top, it will eventually collapse without ongoing spin. But don't throw out the baby with the bathwater.

    Psychological research isn't necessarily the problem; it's the questionable underlying assumptions, the failure to grasp the context of what the patient is reporting, the often poor methodological quality in general, and the disproportionate funding it receives compared to biomedical and other research. We still need larger studies on psychiatric comorbidity which take into account the problems with physical symptoms counting towards diagnosis even in the absence of psychopathology, and on the illness experience of patients without automatically assuming everything is somehow maladaptive.

    Suppose research funding went up to something more reasonable such as $100 million per year. I would have no problem with 10% or even 20% going towards relevant and well conducted psychological research. Ironically, even if 80% of funding went to psychological research, there would be a lot more remaining for biomedical research, compared to the current situation, if CFS received as much consistent funding as some psychiatric diagnoses do.

    It is my impression that psychiatric diagnoses/conditions are under funded more in the sense of allocated resources for treatment and management rather than for basic research. According to the NIH webpage on categorical spending (http://report.nih.gov/categorical_spending.aspx), Depression was allocated $415 million in 2013 vs $5 million for CFS in 2013. I could not find Anxiety per se, but Schizophrenia received $232 million, Mental Health received ~$2.2 billion, and Behavioral and Social Science received several billion in total (there are two categories).

    If you have seen the movie "Rango", perhaps ME/CFS funding could be roughly compared to that small town of creatures in the desert, which is not only severely parched of water but what little water exists is being siphoned off for questionable projects, and not that far away is tonnes of water being thrown around by humans.

    The BPS approach has been presented as cost-saving. This approach for ME/CFS has basically been minimal testing or medical care, and herding patients into CBT/GET-like management. However, patients are not generally recovering or getting back to work as a result, so this approach has failed to deliver significant cost-savings to society apart from the superficial at best, eg discouraging patients from seeking medical care, while ME/CFS continues to be a huge burden elsewhere in lost productivity, welfare/insurance, and lost taxes. Even then, the PACE Trial showed that when taking into account the costs of CBT/GET, overall there are no savings in total service costs, at least in the first year.

    I think BPS in its current form is going to collapse much like previous fads once exposed to adequate scientific skepticism, but any useful parts will live on in whatever replaces it or are already part of alternative approaches.
     
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  20. chipmunk1

    chipmunk1 Senior Member

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    ............Cancer, Autism, Schizoprenia, Psoriasis, Cerebral Palsy, MS, Graves Disease, Diabetes, certain types of Epilepsy all believed to be psychogenic once

    still supposed to be psychogenic:

    IBS, CFS, Multiple Food Allergies, Chemical Sensitivities, MCS, Major Depression, Intestinal Yeast Infections, Nonepileptic seizures, Fibromyalgia

    But don't tell this the Babblers. Some of them still act as if we were in the Fifties.(and reason as if they were in the Sixties, hallucinating on LSD)

    http://link.springer.com/chapter/10.1007%2F978-88-470-2263-8_6#page-1

    http://www.ncbi.nlm.nih.gov/pubmed/21626767

     
    Last edited: Sep 9, 2014
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