Blog: Occupy ME: NIH Forms New Working Group on ME/CFS

[Andy]

NIH recently announced that it is forming a new Working Group on ME/CFS. The announcement is very low on specifics, but this Working Group has the potential to make a big impact on research at NIH.

Dr. Walter Koroshetz, Director of the National Institute for Neurological Diseases and Stroke, publicly announced the Working Group at the May 24, 2018 meeting of the NINDS Advisory Council. In introducing the topic, Dr. Koroshetz asked how many Council members were conversant in ME/CFS and only two people raised their hands (37:55 of this video). That pretty much makes the case for this Working Group right there, in my opinion.

http://occupyme.net/2018/06/22/nih-forms-new-working-group-on-mecfs/

 

[Hoopoe]

In 2015, Dr. Roberds helped lead an NIH meeting to update the research plan for tuberous sclerosis. The meeting was co-sponsored by NIH and the TS Alliance, and led to a set of very specific short and long-term research goals. In 2017, the TS Alliance led an external Patient-Focused Drug Development meeting, and submitted a Voice of the Patient report to FDA.

Presumably, he will do the same with ME.