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Stars Not Aligned Any More: CFS SEP Panel Reverts , McClure on Board

Discussion in 'Action Alerts and Advocacy' started by Cort, Feb 3, 2011.

  1. Cort

    Cort Phoenix Rising Founder

    CFS GRANT REVIEW (SEP) Meeting Roster - (2/22/2011 - 2/23/2011)

    The last CFS SEP Panel, heavy with immunologists and other CFS researchers, was remarkably changed. (Unfortunately Dr. Klimas called the number of grant proposals was 'pitiful' - so it's not clear how helpful they were.) The present panel is remarkably different from the last one and not in a good way. Now we have an in-between panel; it's a mix of pain (FM ie dental) and CFS and other researchers. It's better than most CFS SEP's (a third of the researchers have some CFS research experience - but it's mostly dominated by pain researchers again.

    In contrast to other standing panels which have consistent membership the SEP panels are supposed to reflect the types of applications before them. (This often did not happen before and several researchers have publically complained of having immune grant proposals reviewed by people with other backgrounds.) Whether the new panel reflects more fibromyalgia grant applications coming in (the panel reviews both) or whether the last panel was the anomaly that reflected the heightened interest in XMRV is hard to tell.

    Some changes were expected since this is a FM/TMD panel as well but many of the bright CFS faces on the panel (Klimas, Broderick, Ruscetti, Fletcher are gone...Only Friedberg and Hanson remain.

    We did pick up some CFS researcher support from Baraniuk, Boies and Theoharidies but two of these researchers have hardly been focused on CFS. It's tough to lose researchers with broad experience in CFS and a history of research such as Klimas, Fletcher and Broderick) and replace them with people with more of a peripheral interest. Bizarrely, Dr. McClure showed up and she's the only UK researcher on the panel. Dr. Hanson provides an offsetting viewpoint on XMRV but what a strange thing to have this lightning rod show up on a CFS grant review panel. (A message to the WPI?) As XMRV Global Action notes at one point she said would never have anything to do with this disease again.

    It's a interesting panel of researchers with a wide swath of experience. It shows, I would guess, where the NIH is going with this group of diseases (CFS, FM, IBS)....a mix of behavior and pathophysiology with a strong focus on the brain, the stress response, HPA axis and an indications that researchers across these disorders are looking at childhood stress/HPA axis interactions - as well as in ME/CFS.

    CFS SCORECARD

    • Prominent ME/CFS Researchers - 1
    • Researchers with a bit of ME/CFS Experience - 4
    • Pain Researchers - 10

    Researchers with CFS background

    Dr. Baraniuk - allergist, brain proteome (new paper shortly), spinal fluid ANS

    Richard Boles - believes mitochondrial disorders cause CFS, FM, migraines, depression and other 'affective somatic disorders':


    Maureen Hanson - mostly a plant biologist; primary focus has been studying RNA editing/binding in plant cells, now studying XMRV in CFS, awarded one of few NIH grants on XMRV in CFS, found similar findings to Alter/Lo.

    Myra McClure! - retrovirologist, published contamination XMRV paper and very, (very) early study finding no XMRV, public commentator on XMRV issues..only UK researcher on the panel..quite active in the field....balanced out by Hansen or not?
    T Theonarides - major autism researcher, currently studying mast cell activation in CFS (as well as autism)
    L. Gerber - Cancer Fatigue and CFS - focus hard to tell; a mixture of pathophysiological factors and behavior/perception?
    • Exploratory analysis of the relationships between aerobic capacity and self-reported fatigue in patients with rheumatoid arthritis, polymyositis, and chronic fatigue syndrome.
    • Weinstein AA, Drinkard BM, Diao G, Furst G, Dale JK, Straus SE, Gerber LH. PM R. 2009 Jul;1(7):620-8. (findings - This study confirms that patients with chronic, but stable RA, PM, or CFS are fatigued and have significantly decreased aerobic capacity. Self-reports of physical activity predicted VO(2peak), and may be used as an indicator of activity-based aerobic capacity. Self-reports of fatigue, however, did not correlate with VO(2peak) and hence are assessing something other than an index of aerobic capacity, and provide additional information about patients' perceptions)

    Related Fields

    Lin Chang - main focus - pathophysiology of irritable bowel syndrome (IBS) with particular interests in the overlap of IBS with fibromyalgia, as well as gender differences and neuroendocrine alterations. She is all over the map co-authoring papers on everything from bacterial overgrowth to yes, childhood stress and the HPA axis..http://www.cns.med.ucla.edu/Bios/ChangL.htm
    Mary Meagher - Effects of stress on viral activiation, neuroimmune factors

    Pain Researchers - notice the focus on brain activation, stress and that several fields are exploring childhood stress/HPA axis alterations as well

    Mary Davis - genetic basis for increased pain in FM, behavioral aspects pain/fatigue, cortisol - childhood maltreatment and pain, gender and pain

    Lucy Chen - physiological pain research -

    Dante Chialvo - brain networks - pain, sleep, environmental pollutants (!)

    Joel Greenspan - Pathophysiological Aspects of Pain, brain activation, neural pathways

    Mark Holmberg - cortical response to stimulation, arousal in the brain

    Linda Laresche - Gender and pain - calling attention to gender disparities and the need for more research...(little research herself)
    Octavio Plesh - mostly epidemiological type research on TMD/FM. Worked with Buchwald on one study

    E Schiffman - TMD Diagnosis - not pathophysiological research

    Roland Staud - FM, very little research, appears behaviorally oriented
     
  2. Cort

    Cort Phoenix Rising Founder

    WildDaisy's idea

     
  3. dannybex

    dannybex Senior Member

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    Excellent letter...

    I haven't always agreed with WildDaisy in the past, but her proposed letter is EXCELLENT in every respect. Why in the world McClure is part of this grant review panel is completely dumbfounding and insulting.
     
  4. KnightofZERO

    KnightofZERO

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    Thanks! Outrageous



    How about a Malcolm for a McClure? :thumbsup:

    Thanks for summary... Yeah, a lot of stuff on "HPA axis" (look it up via PubMed & you’ll see it would only be a bit of an oversimplification to say it's the mantra of the all in your head crowd when they want to be more politically correct than to say we're all nuts!).

    If the NIH *just must* have a foreigner why not the NZ professor Warren Tate who just won the Rutherford Medal and has expressed an interest in M.E.? Or someone from the Spanish Research Group working on XMRV? Or Prof. Malcolm Hooper... I'd love to see that!

    Great letter by Wildaisy. Hopefully a lot of us can send out our concerns with letter as a template and reference!


    Also RE what you were saying about not enough grant applications, hasn't the WPI been writing grant applications at a frenetic pace though still with limited success??--that was my impression.

     
  5. Snow Leopard

    Snow Leopard Hibernating

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    At least Jim Jones is gone. :p

    Finding researchers with "CFS" experience is a catch-22 given the low level of funding for this disease.
     
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    McClure's a freakin' albatross, obviosuly "some folk" want this hushed up again :/
     
  7. jspotila

    jspotila Senior Member

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    I wonder if Klimas and others who were on the previous panel have applications pending in this round? That might explain why those researchers were rotated off, due to the conflict of interest issues. This is speculation on my part, though.
     
  8. justinreilly

    justinreilly Senior Member

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    That makes a lot of sense.
     
  9. August59

    August59 Daughters High School Graduation

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    McClure is a hemorrhoid - Everything around her smells like s%^t and she is a pain in the a$$!!!

    I just wish Preparation H would make her go away!
     
  10. acer2000

    acer2000 Senior Member

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    No offense to the UK patients, but how is McClure - a non US citizen on a NIH committee involved in doling out US tax payer monies for research? Is that even legal?

    I think WildDaisy's idea of writing emails is a great one!
     
  11. justinreilly

    justinreilly Senior Member

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    Here is the letter I sent. I used most of Patricia Carter's letter then added my own objections to McClure's saying things in the press which were unsupported by the science and also a complaint on the over-all make up of the SEP (text authored by Dr. Yes). Please, as always feel free to us the whole or any part of this letter unattributed. Letter edited so that it is ready to just cut and paste into your email text field as a complete letter. Remember to sign at the bottom.

     
  12. August59

    August59 Daughters High School Graduation

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    I really would like to know why these US studies, commitees or groups that involve only US money always have UK involvement. First there was Stoye at the BWG meeting and now McClure on the committee. I was feeling pretty good today, but so much for that. This is pretty much a huge slap in the face. Hell, I want all the dentist back!!
     
  13. Crappy

    Crappy Senior Member

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    Oh! I think I am beginning to understand how this funding process works.

    If an illness presents a threat to the sex lives of movie stars and politicians, bureaucratic red tape is shortened and the “virgin locks" slowly turn and the "holy gates" of public funding open, pouring forth any funds as are necessary to beat the horrible atrocity from inflicting it’s wrath on those poor undeserving national monuments of our society. Any funds that are deemed necessary are quickly released to stem the scourge and relive the suffering of those most important to our society.

    On the other hand, No amount of money is too much to spy on, ferret out, and bring to justice anyone who threatens our precious democracy (whether real, or maybe just made up for show). Whether on our soil or foreign soil. No distance is to great, no consultant too costly, and no technology too expensive. The sum total of every man woman and child of the United States will not be spared to bring these horrific threats to our perfect form of government to justice. (If you don’t believe it, just look at how much debt we are incurring by doing just that.)

    So emergencies are liberally funded, and we aren’t an emergency, or even a priority. I guess it’s easy to tell why people are always getting shot, and things are always getting blown up. That’s the only way to get any attention.
     
  14. Cort

    Cort Phoenix Rising Founder

    Here are some emails. I would not email Dennis.....I imagine that he's almost as upset as we are. Here he is trying to bring the community in, trying to be very transparent, trying to show that the NIH is on our side - and they do this. This throws the conversation back to 'the NIH sucks and and can't be trusted" - precisely what he's trying to alter! Hoshawb is one that put the panel together but we need to get in touch with his boss which I thing is Toni Scarpa.

    kathleen.sebelius@hhs.gov

    francis.collins@nih.gov

    toni.scarpa@nih.gov

    hoshawb@csr.nih.gov
     
  15. *GG*

    *GG* Senior Member

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    Would it be alright to post your letter on other forums? I will also provide some background info, I have not seen this mentioned on a few other forums!

    GG

    PS Would anyone know if Wildaisy would mind also, I didn't see how I could ask permission on Facebook even though I could see other left comments?!
     
  16. *GG*

    *GG* Senior Member

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    Wildaisy had Dennis email listed (so perhaps someone can mention this to her?) and also had this info posted:

    http://www.whitehouse.gov/contact/

    President Obama's Science Advisor, John Holdren, at AskDrH@ostp.gov

    find your congressperson https://writerep.house.gov/writerep/welcome.shtml

    find your senator http://www.senate.gov/ (search in top right corner)

    http://www.facebook.com/note.php?note_id=185904741443919&id=100001385235698

    I actually had my new Congressman's office call me today and they told me to call them with an concerns! Don't I feel special!!
     
  17. Snow Leopard

    Snow Leopard Hibernating

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    Didn't McClure say that she won't participate in CFS research any more (after the response of her XMRV study)? Why is she still here?
     
  18. Enid

    Enid Senior Member

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    Cort as a complete outsider having suffered the Wesseley and McClures of this world here it looks like a seminar learning from each other (hope they will) - dodgey bits "behaviour" and "gender". And absolutely no offence taken about the numbskulls here. It seems "patients" must guide experts.
     

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