• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

NIH wants your views on what to research and research strategies

S

Sasha

Fine, thank you
Messages
17,863
Location
UK
Just got this email from NIH:

NIH said:
Thank you for your comments in response to NIH’s Request for Information about research strategies for ME/CFS. Within the next few weeks, we will post your comments online (www.nih.gov/mecfs) to share with the community. Please note that certain personal information will be deleted from comments prior to posting.

Over the next few months, the Trans-NIH ME/CFS Working Group will review all of the responses and use your comments to help guide research strategies and initiatives to advance our knowledge of ME/CFS and eventually find a treatment for this devastating disease. Once the responses are reviewed, the Working Group will prepare a summary which will be posted online (www.nih.gov/mecfs).

Please check the NIH ME/CFS website (www.nih.gov/mecfs) for this information as well as updates of other ME/CFS research activities at the NIH.

Sincerely,

Marian Emr
Director, Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
on behalf of the Trans-NIH ME/CFS Working Group
marian.emr@nih.gov
Click to expand...
 
mango

mango

Senior Member
Messages
905
Email from Marian Emr (NIH/NINDS) said:
As you know, the NIH posted an open invitation in the form of a Request for Informationso that researchers, healthcare providers, patient advocates and health advocacy organizations, scientific and professional organizations, and all others could provide their thoughts about research strategies for ME/CFS. We received many thoughtful comments and ideas.

The comments are now posted online at https://www.nih.gov/research-traini...ih-requested-comments-me/cfs-research-efforts for all to see.

Please note that certain information has been removed (e.g., all emails as well as names and personal information that could be used to identify patients). Names of healthcare providers, researchers and representatives from patient organizations remain.

Over the next few months, the Trans-NIH ME/CFS Working Group will review all of the responses and these comments to help guide research strategies and initiatives to advance our knowledge of ME/CFS and eventually find a treatment for this devastating disease. Once the responses are reviewed, the Working Group will prepare a summary that will be posted online (www.nih.gov/mecfs).

Please check the NIH ME/CFS website (www.nih.gov/mecfs) for this information as well as updates of other ME/CFS research activities at the NIH.

Sincerely,

Marian Emr

Director, Office of Communications and Public Liaison
National Institute of Neurlogical Disorders and Stroke/NIH
On behalf of the Trans-NIH ME/CFS Working Group
Click to expand...
 
You must log in or register to reply here.