Friday, September 24, 2010

WGBH Program: PBS NewsHour

Click on title to view video.

The Patient Advocate stumbled upon this news feature on September 23, 2010 on the PBS newshour. The story seemed strangely familiar. The relevant part of the program starts at 33:15. It is a fascinating story involving real researchers in real universities.

The model presented in this video is the model that the Patient Advocate hopes can be followed in ME/CFS research. It is the public stance of the Whittemore Peterson Institute, a position that they have articulated from the very beginning. The essential bullet points involve collaborative research, shared data in real time, and patient (or treatment) oriented research. (bench to bedside to bench). These are not new ideas invented by the Whittemore Peterson Institute - as can be seen in this video. These forms of research are happening in a variety of areas - HIV, gioblastomas, MS, kidney disease - and more. The WPI is just applying them to ME/CFS research, so far with uncertain results.

Whether or not this model is realistic for the historical claptrap world of ME/CFS research will be seen in the future. Various circumstances of the last year reveal that the scientific force field in ME/CFS is more convoluted than in a disease like MS. (Is this possible?) Most of this can be related to the "disbelief factor" of ME/CFS. Perhaps with the reality that ME/CFS is crossing over (or has crossed over) into the Infectious Disease category will bring it more legitimacy. With an established disease legitimacy, more cooperation, more sharing of data (without stealing) perhaps can take place. The Whittemore Peterson Institute is certainly committed to this idea. They need our continued backing at this critical juncture. Without collaborative research, without the possibility of sharing data, any advances in ME/CFS research will take place very slowly or not at all.

The Patient Advocate has pointed out previously an article in the NYTimes on a similar collaborative, data sharing project in Alzheimer's - underwritten with hard cash from the NIH. Whether these projects are funded by the government or private donors, the essential element of trust has to be present. Older ideas of backbiting and backstabbing have to be temporarily put aside, in order to reach a higher level of operation. This means that data that is freely given or made public by one entity cannot end up in another researcher's grant proposal or published paper, presented as her own. This newer model also cannot work if there is not a give and take. The paradigm is inoperable in a situation were people only take. The WPI is taking their chances reaching out to some of these big-shot research centers, who might be guided by self-interest and venality. This is a two-way street - an idea of total commitment and collaboration. Individuals have to take a back seat to a larger effort. But is this possible in ME/CFS research? It is on this single issue that ME/CFS research will live or die.

1 comment:

  1. You said: "This is a two-way street - an idea of total commitment and collaboration. Individuals have to take a back seat to a larger effort. But is this possible in ME/CFS research? It is on this single issue that ME/CFS research will live or die."

    How do you reconcile this with the treatment of WPI by people such as Prof. Myra McClure? It is a two-way street, and WPI cannot do this by itself; cooperation from other researchers is needed.

    Patricia Carter
    www.mecfsforums.com

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