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Applying Venture Philanthropy to Chronic Fatigue Syndrome - article on WSJ blog

Discussion in 'General ME/CFS News' started by Purple, Sep 15, 2011.

  1. KnightofZERO

    KnightofZERO

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    Justin Reilly I agree with your concerns about "CF" and especially in light of this excerpt from Co-cure:
    ""Mady Hornig, MA, MD is a physician- scientist working at Columbia
    University on the role of microbial, immune, and toxic stimuli in the
    development of psychiatric illnesses."
    http://cfinitiative.org/lead-researchers/mady-hornig/
    "...She also uses epidemiologic approaches to investigate the
    immunopathogenesis of neuropsychiatric disorders such as autism,
    schizophrenia, mood disorders, AD/HD, PANDAS and *Chronic Fatigue
    Syndrome*.""

    Judging from the researchers they should know what this disease is but it is unsettling to see people using "chronic fatigue" instead of "Myalgic Encephalomyelitis" . Anyways this sounds very very promising and I think if they have family friends they will want to make sure that there is concrete research on *the real illness* and not some sort of "collection of buzzphrases" that Wessely and friends plucked out of Freud or who knows where.

    In any illness it makes sense to study the patients using the most stringent criteria and the most severely affected, since the abnormalities will be greater and more easy to identify. Those of us with more moderate illness that might not meet the ICC (actually there is a poll showing almost everyone here meets the ICC but just for the sake of stating it) or Hyde's Criteria understand that studying the most severely affected with the most "classical presentation" is our best hope too...

    Despite the tone of this post, I am really hopeful that this will happen. There is so much basic epidemiology, basic pathology, basic longitudinal studies, protein and mRNA expression studies, Genome sequencing,... so many basic things that need to be done...

    Also now is the perfect time to use M.E. and to make clear the difference between the "chronic Fatigue" that is studied in Britain and the illness as was described by Ramsay, Hyde, Cheney, Peterson etc. etc... I can't see any disadvantages to using "Myalgic Encephalomyelitis" at the present time. And also this gives those in Psychiatry a political out, since they can say they are studying a different illness.

    At this point it is better to give them an out since they have already redefined Chronic Fatigue Syndrome to be unrecognizable with the initial Definition by Holmes and the M.E. definitions by Ramsay, Hyde, CCC, and the ICC. Maybe this way progress can be had.

    Thank-you to Hutchins Family!
     
  2. eric_s

    eric_s Senior Member

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    LOL. No, actually when i heard about this i just wanted to see the people behind it. And i thought he looks quite trustworthy. Like somebody i would trust. Of course one can always be wrong...
     
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    If I were doing this, I would put most of the money into WPI of course. I also would be putting some of that money into looking at the DeFreitas RV (asking WPI to do it and perhaps others)! DeFreitas RV is the leading hypothesis for causation, alongside XMRV a this point, in my mind. Other RVs and ERVs that have been investigated in the past weren't as promising, but deserve another look again. RVs, and to me enteroviruses and cardioviruses, just make the most sense. Why aren't they focusing on the best bets?

    Are they going to publish on the lymphoma/ME connection? This is the most obvious study to do first- monsterous bang for the buck. The connection is so strong a small, inexpensive study would prove it. This would get cancer researchers into it- and we all know how much money goes to cancer research! This would also be huge ammunition against the Wessely con men that ME is organic and serious. People are really scared of cancer and take it seriously. We need some fear to shake things up!
     
  4. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    CCC used by Lipkin and CFI

    Good news. I have heard from a reputable source, whom I can't reveal, that both the Lipkin XMRV study and the CFI are using cohort criteria that without question meet CCC. It is my understanding that they used CCC to select.
     
  6. ixchelkali

    ixchelkali Senior Member

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    Thanks for posting the address. I sent them a thank you.
     
  7. ixchelkali

    ixchelkali Senior Member

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    Sometimes we give the impression of being such a cranky bunch of people. I understand being jaded and cynical, given what's been done to us under the guise of research. But, gee, when somebody donates ten million dollars can't we give them the benefit of the doubt before we start criticizing?

    I hate the name Chronic Fatigue Syndrome as much as anyone, and I fully appreciate the damage it does, and I agree that generic "chronic fatigue" is worse. I understand how it has muddled the research and made us the butt of jokes and scorn for 25 years. I do. But if someone wants to donate ten million dollars to fund good, solid research with top-notch people, I don't much care what they call it. They can name it after their great-aunt Gertrude or Donald Duck, if it gets me a cure. When I win the lottery and have my own ten million dollars to donate, then I'll pick a name I like better.

    I think we should say thank you to the nice people who are donating ten million dollars for research and not criticize them unless they do something awful. A little bit of celebrating wouldn't be amiss, either.

    :balloons::balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
    Tristen and SOC like this.
  8. Valentijn

    Valentijn Activity Level: 3

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    ME doesn't exist in the US. It makes sense to use a term that is at least recognized by doctors, and one that patients and media are more likely to be familiar with.

    It also might make it easier for the CFI to interact with government bureaucracies if they study a disease those bureaucracies acknowledge as existing.
     
    SOC likes this.
  9. Sasha

    Sasha Fine, thank you

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    Hi ix - I agree! They have a fantastic line-up of researchers who we all know to be the good guys - and they have donated 10 million dollars! If I were them, I'd be pretty disappointed by the reaction.

    We get the BWG results today. If it looks bad for XMRV, we'll sure as heck need research money to explore other avenues and this is it. This couldn't be coming at a better time.

    I suggest that we all send the Hutchins a thank-you postcard. Just a postcard, so they don't have to pay a secretary to open it - just a few lines so they don't have to spend forever reading it - no return address so they don't have to expend resources replying. Just "thanks" and a nice picture. After all, they have just given us

    10 million dollars!
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't agree at all. It does not make any sense at all to use the term "chronic fatigue." That's axiomatic.

    They are self-funding, and don't have to use misleading govt-produced terminology so why not do it right? The aim is to help pwME through science, not distort things to make our oppressors happy.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Overall, I am very happy about this news. AND, there isn't any real excuse for using 'chronic fatigue' at this point after they have been set up for over a year with a CEO who seems very bright, educated and effective in his past work and with such top-caliber scientists to advise them. I would understand if patients with cognitive impediments took issue with a Stanford Retard Initiative, for example.
     
  12. Valentijn

    Valentijn Activity Level: 3

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    Like any good non-profit, they'll want to continue existing. At some point, that's going to mean fund-raising. In the US. Where ME doesn't exist.
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    That doesn't mean that they should at least use 'chronic fatigue' without the 'syndrome'!
     
  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think i know why there's so much 'chronic fatigue' talk from CFI.

    from CAA's blog:
    http://www.research1st.com/2011/09/15/cfi/

    "Early in the CFIs discovery process, the Association helped CFI leaders understand the CFS landscape, identify key players and assemble the infrastructure needed to launch the Initiative. "
     
  15. eric_s

    eric_s Senior Member

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    I just checked the CFI's lead researcher page and somehow had the feeling there are less faces there than before. Wasn't Montoya mentioned there before? Or are others missing?

    http://cfinitiative.org/lead-researchers/
     

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