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Research and Neglect: Reflections on 2 remarks by Hornig and Shungu

Discussion in 'Action Alerts and Advocacy' started by akrasia, Mar 13, 2013.

  1. akrasia

    akrasia Senior Member

    "Research funding for chronic fatigue syndrome has been historically limited," says principal investigator Dr. Dikoma Shungu, professor of physics in radiology and chief of the Laboratory for Advanced Magnetic Resonance Spectroscopy Research at Weill Cornell Medical College. "This large, generous NIH grant award will allow us to accelerate in-depth, novel clinical research for CFS to make the significant strides we vitally need for research discovery and clinical care."


    This work is long overdue for a dreadful and neglected illness. I am so looking forward to the day when our ideas and diligence can deliver something beyond hopes and promises.

    Mady Hornig (from a comment on PR on her NSU presentation)

    Both of these statements were made in the last 10 days or so, both bear witness to neglect or in the more oblique words of Shungu to funding that has been "historically limited."

    Our doctors have been eloquent on the need for money for research (for an example of this have a look at Nancy Klimas' acceptance of an award from NOW, where she compares the funding for M.E. to funding for male pattern baldness), but no one has ever spoken about the level of heedlessness and disregard underfunding for M.E. represents.

    Hornig comes out and says it.

    Both pull their punches by not assigning responsibility for this fact but it is no longer simply our "perception" of what has happened or our role in somehow thwarting inquiry by our behavior whether it's "pestering" questions or supposed threats.

    While you can't expect full throated denunciation of institutional inertia and individual bad faith from people like Hornig and Shungu, that they are prepared to say it at all is striking and new.

    Alex, he of the broken leg and swift recovery I hope, once said that the problem with m.e. patients and their comments on various inane and vicious articles published in the mainstream media, was not that they were angry in their expression but that not enough people were angry, that if the world at large understood the numbers of people affected by this that it would precipitate a different kind of debate.

    I think this will happen, the numbers of the articulate angry will grow once legitimacy is achieved and that day is not that far off. And then it will be up to us to demand that our institutions take ownership both for their past actions and present responsibilities.
  2. Little Bluestem

    Little Bluestem All Good Things Must Come to an End

    Here's to the articulate angry! May they be us.

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