Why MEAdvocacy Does Not Applaud The News From NIH…Yet

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Posted by Gabby Klein on December 02, 2015.

The Announcement 

The myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) community has welcomed and applauded the National Institutes of Health (NIH) News Release announcing a strengthening of efforts by the NIH to advance research for the disease.  The overwhelming feeling is that the promises outlined in the announcement ushers a new era of hope for the long suffering ME/CFS patients.  NIH Director Francis S. Collins, M.D., PhD. assures: “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

The notice announces the readjustment of the Trans-NIH ME/CFS Research Working Group.  It will now be chaired by Walter J. Koroshetz, M.D. and assisted by Vicky Holets Whittemore, PhD- representative for the Department of Health and Human Services (HHS) on the Chronic Fatigue Syndrome Advisory Committee (CFSAC).  They will discuss gaps in research and look for scientific opportunity. This Group will be led by the National Institute of Neurological Disorders and Stroke (NINDS).  Although we are wary of yet one more working group, we hope this might result in more vigorous research into the disease.  It is not clear at all though how much and from where new funds will be coming from.  The notice states: “The Working Group includes representation from 23 NIH institutes, centers and offices” – yet no word about patient or advocate representation!

 

To read the rest of this story in ME Advocacy, click on the link below:

 

Link to story in ME Advocacy

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