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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Article: The Stars Begin to Align at the NIH: A CFS Review Panel. For CFS!

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 12, 2010.

  1. Roy S

    Roy S former DC ME/CFS lobbyist

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    Cort, I don't know how you can say this. Didn't you just write some things about how bad the problems were with grants being unfairly rejected? I've been hearing it for 20 years and I don't think the researchers are crazy or stupid or liars.
     
  2. xrayspex

    xrayspex Senior Member

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    Hey thanks for info, a few very good ones on there, really the scary one is James Jones.....from what I hear he is as bad if not worse than Reeves and his history of working against m.e. patients goes back to the 80s when he helped come up with bogus name "cfs" to water down a real neuro-immune illness.....don't know why he has to be part of this group :( hopefully he won't get in the way.......
     
  3. Ernie

    Ernie *****

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  4. Gemini

    Gemini Senior Member

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    Rivka,

    Charlotte was right on to question why a psychologist working in the field of dentistry is heading the ME/CFS grant review panel.

    Needed is someone with broad infectious diseases/immunology knowledge who can stimulate and evaluate grant applications from that research community and who has experience with antiviral/immune modulating clinical trials.

    Yes, regular on-going patient meetings are great idea. Much more needs to be done.
     
  5. ixchelkali

    ixchelkali Senior Member

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    That's very good news, Cort. Even if there are still a few duds on the panel, having several good people is a big step forward over having no good people. It's exciting to think that at long last they'll have some people who are actually familiar with ME/CFS reviewing the grant applications.

    I notice that on the NIH's "Welcome to CSR" page it says that
    I see that under "Challenges and Changes" it says that one of their five goals is to

    I hope they do want to increase the transparency. I think Cort or the CFSAC could probably give them several suggestions about ways to do that.
     
  6. Cort

    Cort Phoenix Rising Founder

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    I wasn't implying anything negative; it just made sense to me - they knew they only had a small chance of getting their grant funded (ie they were being unfairly rejected) so they didn't apply. Dr. Glazer said as much in his recent CFSAC testimony. I don't think they're crazy or stupid or whatever - I wouldn't apply in those circumstances either - it would make sense to spend months on a application that wasn't going to get funded.
     
  7. Cort

    Cort Phoenix Rising Founder

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    Each grant is reviewed by two or three researchers - so while Dr Jones or someone else could do some damage it would be limited. My understanding is that each reviewer only gets a couple of studies (or one?).
     
  8. ixchelkali

    ixchelkali Senior Member

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  9. HowToEscape?

    HowToEscape? Senior Member

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    The researcher is
    i) actually named "Jim Jones"
    and
    ii) publishes articles on psych under that name rather than using "James" or a middle name?
    Hey, how about the "Jim Jones Guide to Faith and Religion".

    Yes it's his name, but even if it were my given name I wouldn't publish books on politics with under the moniker "Joeseph Stalin".
     
  10. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Another view

    Another view

    We can also look at it another way. How do you change the view of individuals who are preset? Shut them out? Or do you include them so they hear the correct viewpoints? Maybe this is an opportunity to have more direct influence.

    Tina
     
  11. Lynn

    Lynn Senior Member

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    Good One. You are so wise!

    Lynn
     
  12. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Thanks

    Thanks Lynn.

    And while I think maybe it isn't the best to have a dental person heading it up, from what Cort reported, unless my CFS brain misunderstood, this same group reviews TMJ and fibromyalgia requests.

    So, it that is the case, I guess you do need to include a dentist.

    Also, well, usually, the leader handles more organizing, assigning, and less actually making the decisions on matters committee decides.

    I don't know if this works that way or not.
     
  13. xrayspex

    xrayspex Senior Member

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    I would be happy if former saboteurs of cfs patients turned around and will hope for the best, but please everyone, shout their history from the rooftops as we go thru this process, jim jones past needs to be known by us and all as do some other folks on the panel (see hilary johnsons website for insights about past saboteurs) as this will be one way to try to keep them honest or if they pull funny stuff then we can be watching and call them out, people need to be forewarned so they can be helpful observers of this process
     
  14. WillowJ

    WillowJ Senior Member

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    rofl, true that
     
  15. WillowJ

    WillowJ Senior Member

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    Wow, that has some incredible talent there. How did we get Dr. Mary Ann Fletcher and Dr. Fred Friedberg (president of International Association of ME) and Dr. Nancy Klimas and Dr. Francic Ruscetti? And some other people who look really super good that I didn't know previously. Just wow.
     
  16. WillowJ

    WillowJ Senior Member

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    This Fillingim character sounds like not the kind of person who would be helpful in our situation. I looked up his research, too (before I got to the part where someone had kindly posted it), and he's after the CDC's "CFS" division's own heart. We should petition to have him removed on the grounds that there's already been overmuch research on this sort of thing at the expense of much more desperately-needed biomedical stuff.

    (Side note: and how does shoulder surgery go with a dental school?)

    Someday 70 or 80 years hence when the stigma has been erased, they can start looking into the valid psychological aspects of ME/CFS, but there needs to be a long moritorium on that for the time being. Unless it's on how the (bio)psychosocial model has hurt patients and damaged the doctor-patient relationship and the government's credibility--but we still need the biomedical stuff much more desperately than that.

    About James Jones, he really is a scoundrel. I would like to think he's rehabilitatable (although he's had plenty of opportunity for this already, working with Dr. Bristol Sorensen and Dr. Suzanne Vernon), but he really ought to be dismissed outright simply because of this:
    Lots of stringy sentences and psycho-jargon, but try reading just the bold to try to make some sense out of it.

    Unless he is prepared to redact such opinions, he ought to be dismissed. Blaming the patient is a sadly unprofessional way to conduct oneself and ought not to be countenanced.

    I realize he stuck some other stuff in there (cytokines, the brain unconsciously does stuff, we might need actual medicine), but the conclusion is actually this is not an actual disease; CFS is only a mock disease in the opinion of James Jones. Shocking. No one who says it's a mock disease belongs on this panel. Ever.

    Edit: I'd like to change my mind and agree with Tina. Not necessarily that Jones should be on the panel, but that no one, no matter how much he's hardened his mind, is beyond the reach of truth. Everyone is capable of change.
     
  17. WillowJ

    WillowJ Senior Member

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    Biaggioni was new to me, so I looked him up, and just by his last three studies I am so excited. Just look!

    Orthostatic Hypotension and Cardiovascular Risk.
    Shibao C, Biaggioni I.
    Hypertension. 2010 Nov 8. [Epub ahead of print] No abstract available. PMID: 21059992

    Long-term Treatment With Rituximab of Autoimmune Autonomic Ganglionopathy in a Patient With Lymphoma.
    Hollenbeck R, Black BK, Peltier AC, Biaggioni I, Robertson D, Winton EF, Raj SR.
    Arch Neurol. 2010 Nov 8. [Epub ahead of print]PMID: 21059985

    Comparative efficacy of yohimbine against pyridostigmine for the treatment of orthostatic hypotension in autonomic failure.
    Shibao C, Okamoto LE, Gamboa A, Yu C, Diedrich A, Raj SR, Robertson D, Biaggioni I.
    Hypertension. 2010 Nov;56(5):847-51. Epub 2010 Sep 13.PMID: 20837887
    "Orthostatic hypotension affects patients with autonomic failure producing considerable disability because of presyncopal symptoms."
    http://www.ncbi.nlm.nih.gov/pubmed/20837887

    Wow, isn't that cool? Just the researcher we need.

    There's lots more on OI and POTS, the vanilloid receptor (haven't I heard something about that in connection to ME?), inflammation, autonomic study, and cell biology. This is a serious scientist with interests in the actual pathology areas of ME.

    And looky here:
    Raj V, Haman KL, Raj SR, Byrne D, Blakely RD, Biaggioni I, Robertson D, Shelton RC. "Psychiatric profile and attention deficits in postural tachycardia syndrome." J Neurol Neurosurg Psychiatry. 2009 Mar;80(3):339-44. Epub 2008 Oct 31. PMID: 18977825

    :D:D:D:D:D:D:D:D
     
  18. WillowJ

    WillowJ Senior Member

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    I also wasn't familiar with Broderick, although I thought I'd heard his name (I was thinking maybe Canadian Consensus document, but haven't yet checked), but that's my bad. He's on a lot of studies I'm familiar with like the most recent NK as biomarker study and several others with Klimas, Fletcher, and/or Vernon.

    New one of interest (not CFS, but related):

    Broderick G, Kreitz A, Fuite J, Fletcher MA, Vernon SD, Klimas N. "A pilot study of immune network remodeling under challenge in Gulf War Illness."
    Brain Behav Immun. 2010 Oct 16. [Epub ahead of print] PMID: 20955779

    Department of Medicine, University of Alberta, Edmonton, Canada.
    Abstract

    :)
     
  19. WillowJ

    WillowJ Senior Member

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    Hanson is a cell biologist with an interest in mitochondria. Has done a recent paper on MRSA. RNA editing, organelles, microfilaments and microtubules, really interesting stuff.

    Older articles on migraines, apoptosis.

    I can't find any XMRV stuff. Maybe Cort is referring to as-yet-unpublished work? I should check the XMRV list but it's rather late and I feel a bit lazy.

    There is this, however:

    Hanson SJ, Gause W, Natelson B. "Detection of immunologically significant factors for chronic fatigue syndrome using neural-network classifiers." Clin Diagn Lab Immunol. 2001 May;8(3):658-62. PMID: 11329477
    "A sensitivity analysis of the network found differences between groups that are consistent with the hypothesis that CFS symptoms are a consequence of immune system dysregulation."
     
  20. WillowJ

    WillowJ Senior Member

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    Szomolanyi-Tsuda is a geneticist and cell biologist. Also with an interest in specific pathologies relevant to ME/CFS.

    Tay CH, Szomolanyi-Tsuda E, Welsh RM. "Control of infections by NK cells." Curr Top Microbiol Immunol. 1998;230:193-220. Review. No abstract available. PMID: 9586357

    Guay HM, Mishra R, Garcea RL, Welsh RM, Szomolanyi-Tsuda E. "Generation of protective T cell-independent antiviral antibody responses in SCID mice reconstituted with follicular or marginal zone B cells." J Immunol. 2009 Jul 1;183(1):518-23. PMID: 19542462

    Mishra R, Chen AT, Welsh RM, Szomolanyi-Tsuda E. "NK cells and gammadelta T cells mediate resistance to polyomavirus-induced tumors." PLoS Pathog. 2010 May 27;6(5):e1000924. PMID: 20523894

    Kemball CC, Pack CD, Guay HM, Li ZN, Steinhauer DA, Szomolanyi-Tsuda E, Lukacher AE. "The antiviral CD8+ T cell response is differentially dependent on CD4+ T cell help over the course of persistent infection." J Immunol. 2007 Jul 15;179(2):1113-21. PMID: 17617604

    :D
     

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