Short Update on the NIH and Chronic Fatigue Syndrome ((ME/CFS)

Cort

Founder of Health Rising and Phoenix Rising
Staff member
The Trans-NIH Working Group is the hub where the work on ME/CFS at the NIH will proceed. This "Working Group" is tasked in with devising a strategic plan and increasing funding for ME/CFS. It's a big job.

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Whittemore,-Vicky.jpg
[/fright]I asked Vickie Whittemore - the co-leader of the group - when the group will meet, how often it will meet and how we will find out about it. The bad news is the first date for the new Working Group to meet (it should contain new higher level members) has a month or so after the announcement not been set. The good news is the Whittemore wants the group to meet once a month = something she acknowledged may not be realistic or practical.

It's be important to see who is in the new Working Group (will it contain "decision-makers), and of course, to see what happens during the first meeting. The group will be determining how to meet the goals of the IOM and P2P reports.


Q: Has a date been set for the next Working Group meeting?

R: We are working to reconvene the Working Group but a date has not yet been set.


Q: How many Working Meetings do you anticipate a year?

R: We are working to identify a regular time each month for the Working Group meeting, so we would plan to meet ~12 times per year.


Q: Will we have access to the roster?

R: Yes, the roster will be posted on the NIH website along with updated information on ME/CFS in the near future.


Q: Will you report to us the results or can I contact you regarding the results?


R: The Working Group will keep the community updated on the goals for the group and our progress through the NIH website. We are also discussing other ways to inform and get feedback and input from the community.
 

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