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Tuesday 2/22 - What are NIH staff being taught about ME/CFS?

Discussion in 'Action Alerts and Advocacy' started by Hope123, Feb 22, 2011.

  1. Hope123

    Hope123 Senior Member

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    Find out by watching Dr. Fred Gill's TUESDAY 2/22 4 PM Eastern Standard Time talk on ME/CFS (Chronic Fatigue Syndrome: Is there a virus?)
    as a part of the NIH series 'Demystifying Medicine' which is

    "Primarily directed toward Ph.D. students, fellows, and staff, it is also of interest to medical students and clinicians."

    The US National Institutes of Health not only provide the majority of money for medical research in the US (financed by your tax dollars), they also train the nations' most promising future researchers.

    Dr. Gill lists the CDC Toolkit, a 2004 article by Stephen Strauss, CFIDS.org website, the Fukuda 1994 criteria, and the Reeves 2003 empiric definition articles as resources for the audience. By the looks of the slides, there is nothing related to the many biological studies done within the last 20 years. If this is what is being taught to NIH staff, it is no wonder no one is interested in researching ME/CFS. The NIH is supposed to be cutting-edge, not repeating the same information over and over again.

    Slides: http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Gill.htm

    To watch live tomorrow or later when the video is archived:

    Lectures are presented live via online streaming video, and recorded videos are available for viewing online within a few days after the live event. Both the live sessions and the recorded sessions can be found on the NIH Videocasting Web site. The lectures can be viewed online as streaming video using "Real Player," which is available as a free download from the Videocasting Web site.

    NIH videocast site: http://videocast.nih.gov/

    (If you miss the live event, click on "Past Events" and look for it in the archive.)

    [Drs. Lo and Alter are also presenting but their talks are primarily about XMRV and their findings and less so about ME/CFS in general.]
     
  2. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    His presentation is gross. just a rehashing of straus' anti-science propaganda. maybe he knew straus. i wrote him an email asking him to read the ccc and use it in his presentation.
     
  3. Dolphin

    Dolphin Senior Member

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    Thanks for this, Hope123.

    Looking at the slides, I'm not happy at all.

    Looking at Slide 44, especially when looking at slides 37 on, there is little doubt its the sort of stereotype that is put out by those who promote GET and CBT based on GET. There are other alternatives to GET and CBT based on GET than the rest cure. And most people don't even have the option of complete rest. Leonard Jason has shown that the energy envelope has got good results.

    Also Lenny Jason published this NIH-funded study (attached and below). The CBT arm was overseen by Vincent Deary from King's College London who had been involved in "successful" CBT trials including the PACE trial. The intervention that involved pacing came out better than CBT. They used a variety of outcome measures.



    Here's an extract:


    I don't mean to be pedantic but it's easy to get confused on this. It's the Reeves 2005 empiric definition.

    This is important because there is also a Reeves 2003 paper on the defintion:
    The 2003 paper is a pretty bland paper. They make some small updates to the Fukuda et al (1994) criteria. It's the CDC international CFS study 2000-2003 mentioned in the slides.

    It mentioned some questionnaires could be used. The 2005 paper is where the CDC takes this and does very odd things to it - uses the questionnaires in very odd ways.

    Also, the 2003 paper made these recommendations regarding psychiatric exclusions:
    For some very odd (and suspicious!) reason the 2005 misrepresents this:
     
  4. Hope123

    Hope123 Senior Member

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    Dolphin, the paper cited is from 2003, which is why I put 2003 in my post but we should watch the video to see how Gill refers to this information:

    http://demystifyingmedicine.od.nih.gov/DM11/CourseMaterials11.html

    Identification of Ambiguities in the 1994 Chronic Fatigue Syndrome Research Case Definition and Recommendations for Resolution. BMC Health Services Research 3: 25, 2003. Reeves WC, Lloyd A, Vernon SD, Klimas N, Jason LA, Bleijenberg G, Evengard B, White PD, Nisenbaum R, Unger ER, and the International Chronic Fatigue Syndrome Study Group.
     
  5. Dolphin

    Dolphin Senior Member

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    Hi Hope123,

    You said:
    There is no 2003 empiric definition paper. That's what I tried to explain.
    His slides cover both the Reeves et al. (2003) paper you mention above in this post but also slide 17 talks about a 2005 study.

    However, I'm looking at that more closely, and what is possibly being referred to there is the Georgia study (which uses the 2005 empiric paper and I think started around 2005).

    Anyway, no biggie, it's just I think a lot of people get confused between the Reeves et al. (2003) paper, which isn't particularly problematic and the Reeves et al. (2005) paper which is (problematic). I'm just trying to educate people out there on the issue.

    Anyway, it'll be interesting to hear what he says - doesn't look good. Well done for highlighting it.
     
  6. Hope123

    Hope123 Senior Member

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    I haven't seen the talk yet but it looks like Gill added some slides at the end about the UK PACE trial.

    Gill is presenting this information to the US' most promising young researchers and clinicians. Without showing the biological abnormalities that have been documented with ME/CFS , no matter what is said in the talk, it sends the message of "Why worry about these folks? There's nothing wrong with them. All they need is exercise, antidepressants, a pat on the hand, "there, there, dear," and they'll get all better. " [cue REM's "Shiny Happy People" and MAD's Alfred Neumann]


    It's my belief that if they discuss the abnormalities, researchers and clinicians would be more interested. And no, the abnormalities don't need to be entirely proven or consistent -- these folks are suppose to be able the handle the controversial, the new, etc. and are supposed to be independent thinkers, not "sheeple." However, the XMRV situation turns out, we want them to know of the other findings -- who knows if there's some brilliant scientist in the crowd who will hear an idea, have a lightbulb go off in his/her head, and ultimately help find the solution to this illness?

    Send your comments/ questions to Dr. Gill and cc Dr. Francis Collins, the director of NIH.

    Dr. Gill: http://www.cc.nih.gov/about/SeniorStaff/fred_gill.html (fgill@nih.gov)
    Dr. Francis Collins: francis.collins@nih.gov
     
    Snow Leopard likes this.

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