Invest in ME Conference 12: First Class in Every Way
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FDA Rep on why understanding the aetiology & pathophysiology of ME/CFS is important

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Jan 9, 2011.

  1. Dolphin

    Dolphin Senior Member

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    FDA Rep (CFSAC) on why understanding the aetiology and pathophysiology of ME/CFS is important (and why the UK MRC research strategy was flawed)

    I thought this was interesting. It shows why research which helps to elucidate the aetiology and pathophysiology of ME/CFS is so important.

    ================================

    http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac20101013.html

    CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE Oct 14, 2010

    [..]

    [..]

    [..]

    ===============
    Contract that with what the UK's Medical Research Council Research Strategy (2003) recommends, where it prioritised areas other than understanding the aetiology and pathophysiology:


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    Many including myself feel the contents of this strategy was influenced by the following which was announced two weeks later in May
    2003:
    MRC Announces Two Trials To Assess CFS/ME Treatments (PACE Trial and FINE Trial)
    http://bit.ly/etuNB5 i.e.
    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0305C&L=CO-CURE&P=R795&I=-3
    ------------

    Putting the two together and the fact that Medical Research Council has failed to fund grant applications that looked at the aetiology and pathophysiology of ME and CFS, one could say they are at least partly to blame for the lack of drugs available for the condition.

    Anyway, the ME/CFS community can help by raising money itself either through donating or fund-raising as well as when possible and useful indulging in lobbying to ensure we get a fair share of research budgets.
     
  2. Esther12

    Esther12 Senior Member

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    Do you know who was on that Advisory Group?

    I hate them.
     
  3. Dolphin

    Dolphin Senior Member

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    The Advisory Group was supposed to be "fresh and independent" so didn't have household names on it. Many people feel they did it to cut out people who might views which would challenge the consensus.

    However, they managed to have:
    Philip Cowen who had co-authored papers on CFS with Michael Sharpe
    and
    Alan McGregor who had published with Simon Wessely and who was Chairman of Linbury
    Trust Scientific Advisory Committee on Chronic Fatigue Syndrome (known for their biased approach towards CFS).

    There was also Til Wykes a psychiatrist who was doing Gulf War Syndrome/Illness research at the time with Simon Wessely.
     
  4. richvank

    richvank Senior Member

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    Hi, Dolphin.

    I certainly agree about the importance of focusing on etiology, pathogenesis, and pathophysiology in ME/CFS. In fact, they are what I have focused on for 15 years now. I'm hopeful that I will get a chance to convey the importance of them, as well as to present my view of them, at the upcoming NIH workshop.

    Best regards,

    Rich
     
  5. Esther12

    Esther12 Senior Member

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    I wouldn't read read this post (I started typing, decided it was boring, but then thought I'd finish it off to see if what I was thinking made sense):

    I think that scientists and experts have a really important role in shaping the way in which these sorts of decisions are made. The decisions need to be influenced by the current evidence, and an understanding as to what further advances are likely to be made, given our current limitations. But once those limiting factors are explained, it is the preferences of patients and of society at large which should guide the final decision. This would be the case even when the evidence was clear and decisive, never-mind when it is as confused and weak as it is with CFS. The utter indifference shown to the desire patients have to prioritise work intended to understand the underlying pathology of their condition, rather than coping strategies which place them at the mercy of the sort of people we have currently working at many of the CFS specialist centers; is just another example of the caring and paternalistic stigmatization which occurs through the promotion of the current psycho-social model. I remember one of the leading psycho-socialists arguing that patient's desire to understand why they were ill was evidence of unhealthy sickness behaviors: it seems we have a really limited range of permissible responses to our illness.
     
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  6. Angela Kennedy

    Angela Kennedy

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    Hey, I read it ok. I think you've made fair points there. The "really limited range of permissible responses to our illness" in particular IS indeed an odd situation that the community seems to be facing and the psychiatrists and others promoting, which says something about the ideologies and world-views of certain psychiatrists, which lead to 'psychologists' fallacies', I would argue.
     
  7. Esther12

    Esther12 Senior Member

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    Thanks Angela. I'm always suspicous of thoughts that seem born of rage... and I'm getting them a lot about the way CFS is treated at the moment. I might salve myself with some Bugs Bunny.
     
  8. markmc20001

    markmc20001 Guest

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    Yep!! "plausible deniability" right in front of our eyes.

    "In view of the probable multiplicity of potential causal factors and the widely disparate findings so far reported, the MRC CFS/ME Research Advisory Group considers that studies investigating causal pathways and mechanisms, whilst having merit, would not have the same immediate impact on increasing understanding of CFS/ME, nor reducing the suffering of patients. This is not say that such studies should be abandoned, rather that it is not an essential prerequisite to identify triggers and causal pathways in order to undertake research on CFS/ME."

    Causal pathways might have merit. RIIIIIIIIIIGHT.....

    CFASC is a dog and pony show designed to make it look like something is happening. When in fact, it just keeps us all waiting year after year. What a joke.
     
  9. markmc20001

    markmc20001 Guest

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    Your patience and professionalism are impressive Rich.

    You have it right Rich with all your hard work. Thanks a million.

    Anybody that can raise a $200million? We can split it between the WPI, and a team consisting of RichVanK, Burt Berkson, Boyd Haley? We can see who comes up with the most effective(and affordable) treatments within 5 years.
     
  10. Angela Kennedy

    Angela Kennedy

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    Ah, the old rage. Some of my most productive thoughts over the years have been fueled by rage lol!

    One other thing you picked up on that I should mention too- the argument that trying to understand what's going on in your illness is deemed somehow maladaptive in CFS: singularly so as well. What other illnesses are people deemed maladaptive for trying to understand their illness? AIDS? Cancer? Leukaemia? Bipolar disease? I actually got told by a gynaecologist a few days ago to 'go on the net' to find out more about something I'd asked her about (a drug side effect), and she wasn't being sarcastic or negligent! There is something odd about this attitude you see in the psychiatric literature on CFS.
     
  11. Esther12

    Esther12 Senior Member

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    Anger can be useful... but it's easy to get caught up in feeling self-righteous. It's hard to get the balance right, and given the 'militant patient' meme that surrounds CFS I try to err towards caution.
     
  12. acer2000

    acer2000 Senior Member

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    The FDA is correct. Finding the etiology is what matters. Once that happens, everything else is made much easier. That is what they need to focus on.
     

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