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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Spring CFSAC 2013 Meeting live streaming starting today - Weds 22 May

Discussion in 'General ME/CFS News' started by Sasha, May 22, 2013.

  1. NotAllInMyHead

    NotAllInMyHead

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  2. Ember

    Ember Senior Member

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    You describe Dr. Maier's outburst: “Such self-pitying outburst in the face of unending patient suffering—suffering that doesn’t take a break for weekends, that lasts for weeks, months, years, decades—was plain grotesque.”

    I'm still not sure whether to take her outburst at face value. When I was trained in bargaining, I was told that negotiators never lose their tempers. They use their anger.
     
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  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I could not agree more, snowathlete!
     
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  4. WillowJ

    WillowJ Senior Member

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    fwiw, NK cell function could be used like ANA. low NK cell function is found in cancer and other conditions (I do not recall seeing depression on medical sites but it's possible; depressive diseases do share pathology with other major diseases).

    ANA is used as part of the diagnostic profile for Lupus and RA and Sjogren's, among others probably (also ANA overlaps with the population considered to be healthy - though as far as I know, "'healthy' people with positive ANA" could be us!). They also use clinical presentation (i.e. signs symptoms like joint pain, cognitive disturbance, fatigue - yes, fatigue, rash, joint swelling/redness and so on) to diagnose these diseases. And other diagnostic tests.
     
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  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Gabby,

    That was really great testimony you gave!! one of the best I've ever heard! Thank you.
     
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  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Brilliant!!
     
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  7. JT1024

    JT1024 Senior Member

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  8. Andrew

    Andrew Senior Member

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  9. Sasha

    Sasha Fine, thank you

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    Nielk likes this.
  10. Nielk

    Nielk

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    A good account of the "fireworks" at the end of cfsac meeting from Occupy CFS here.
     
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  11. WillowJ

    WillowJ Senior Member

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    the both of them are awesome. I wasn't able to watch this year's CFSAC, but I've seen both of them in prior years and they are great. They speak up and say stuff for us. They push for faster decisions.
     
  12. Ember

    Ember Senior Member

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    I can't comb through more of the minutes, Mark. But this exchange from November 2011 may give the flavour for how circular these discussions have been:
    I seem to recall hearing too that the few who are knowledgeable in the field are all applying for grants. So they can't serve as reviewers. So the reviewers aren't knowledgeable the field. So too few grants are approved. So new applicants aren't attracted to the field. So the few who are knowledgeable in the field are all applying for grants, etc., etc.
     
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  13. Mark

    Mark Acting CEO

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    Thanks for that Ember, that makes a lot of sense. The answers (from the NIH rep?), I expect, are simply answers on how the application and review process works, right across the department, for all budget heads: anonymous review and panels that change through the course of the process sound like they are standard practice for the department for all funding, so there's no realistic prospect of changing that as a policy and hence no point in anyone complaining about it.

    But that's a great insight that, for any field, especially any 'new' field or paradigm shift, with a relatively small pool of researchers, with few sources of funding, where all the researchers are applying, the problem is that none of them can also sit as reviewers and therefore the reviewers are mostly from the 'old-fashioned' camp. That does sound like a crucial dynamic and a fundamental problem to overcome. It sounds like a hurdle that would need to be overcome for any new field to be able to get properly started. Logic suggests that they only way to "boot-strap" out of this situation would be if some researchers were to forego funding from the agency in order to serve as reviewers - and form a sufficient majority to kick-start the field and get us out of the chicken-and-egg situation. Then, instead of the vicious circle, the virtuous circle - of increased funding, increased applications and increased interest in the field - can begin. Since what's being described in the NIH answers is simply how the system works, as a whole (not just for ME/CFS), it may not be realistic to try to change or circumvent the way all NIH research funding works, so a way round the roadblock needs to be figured out. Sounds like the only answer to that problem is: get more good researchers onto the list of grant reviewers. Down to both NIH and the research community, together, to work that one out?
     
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  14. Shell

    Shell Senior Member

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    I've been watching some of the Cfsac meeting vids from last year and the year before on Youtube. They seem designed to help reduce the surplus population as they leave you with an urge to jump off a tall building (if you were well enough to climb the stairs).

    I am coming to the conclusion that the only way ME patients will see a light at the end of the tunnel, that isn't the train coming to run us down, is if all the money other similar diseases get (such as MS) leads to a breakthrough that can help us.

    As for the idea that poor didum doctors find the Canadian Criteria too difficult to understand; when you think that many of us with no medical training and plenty of brain fog understand it, I am beginning to think my suspicion that most medics slept through med school, if they attended at all, and can't read research might be right after all.
     
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  15. Ember

    Ember Senior Member

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    Your proposal would involve researchers' withdrawing from the field and submitting fewer applications, which would only exacerbate the problem as characterised by the NIH. How about designating special funds to ensure a higher rate of application approval? Such affirmative action, unfortunately, has limited NIH appeal. Hence the mounting frustration.
     
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  16. WillowJ

    WillowJ Senior Member

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    the CCC or ICC really doesn't seem much more complicated than a diagnostic criteria for Lupus or MS, for example, but to be fair, specialists are the ones who apply those types of criteria (not usually primary care docs).

    Doctors are programmed to 1) learn something in med school (and possibly educational conferences) and 2) rigidly apply that training.

    Generally speaking, it takes a PhD (or MD/PhD) to critically evaluate things, think about stuff, do something unusual/ not taught in med school. Or an MD who was taught by a PhD who valued critical thinking (or otherwise came upon value/skills of critical thinking).

    I still think our own ME/CFS doctors should form their own speciality, Neuro-Immune Disease. Add GWI docs and whomever else makes sense. And treat MCS, etc. as well.

    I agree that DHHS should certainly do something to attract more researchers and clinicians to the field and figure out how to get them knowledgeable about what we actually have across all severity levels.
     
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  17. Andrew

    Andrew Senior Member

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    IMO, the comment she made about tLhe CCC being complicated is nothing but a smokescreen. She knows doctors are intelligent enough to use a checklist.
     
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  18. barbc56

    barbc56 Senior Member

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    Please keep in mind that I haven't been here for a while. I've not only been down but also out.:(

    From what I've read posters are putting a lot of thought into their responses and that takes time something we don't always have the energy to do.

    I don't know if this meeting is the venue for this but has anyone asked these people what they suggest we do to increase funding, knowledge about cfs/me, etc. On the one hand this might be illuminating. On the other I can only shutter if the responses are the usual bureaucratic speak.

    If this has been discussed here, let me know. I plan to read all of this when feeling better.

    Dentist??? Dentist??? WTF????? :mad:
     
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  19. Ember

    Ember Senior Member

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    Increase the number of successful applications.:ill:
     
  20. frenchtulip

    frenchtulip Senior Member

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    http://grants.nih.gov/grants/PeerReview22713webv2.pdf I was looking on the NIH website to try to understand the criteria used in selecting peer reviewers. Under Expert Assessment at the above URL, I saw this.
    "Also, in certain cases, public representatives
    may be recruited to provide perspective
    from the patient or advocacy point of view . . ."
    I wonder if any public representative has ever been recruited for an ME application to provide perspective from the patient or advocacy point of view.
     
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