NIH Steering Committee Wants Your Input!

Posted by Cort Johnson

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Written by Cort

4727-CFSWorkshopApri_11.jpgMary requested this be posted. The Steering Committee is in charge of determining the subjects and reseachers presenting at the NIH State of the Knowledge Workshop in April.

Hi everyone. I think by now you know about the NIH workshop in April to prime the pump for research funding on ME/CFS by educating other agencies within NIH and scientists who might be helpful – but none of these folks know a thing about our disease except what they’ve been reading lately about the retrovirus. Now that we have their attention, we’d like to share information about other biological abnormalities, problems, dilemmas, etc. The format is to have a panel chaired by someone knowledgeable about The Disease, with outside scientists and NIH decision makers on the panel. There will be a presentation, then brainstorming.

I think this is a good direction to go in. I am on the program committee representing patients, so I’d like your input. To spare myself total information overload, here are three questions. You can put answers here – I’m going to start a discussion topic – or write me privately. Then I’ll do my best to compile the results and bring them to the committee (via email). Not much time – the program must be finished in two weeks. Here are the questions:

1. If there was only one topic covered, what would you want it to be (besides XMRV)?

2. We need experts on various aspects of The Disease. Dennis Mangan at NIH, who is running this show, has done a good job, but we could use some more. All suggestions welcomed.

3. If only one thing came out of this conference, what would you want it to be?

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