NIH: Request for Input on How To Advance ME/CFS Research, Deadline May 1, 2019

Gemini

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NIH's "NANDS Council Working Group" is requesting input from researchers, healthcare providers, patients, patient advocates, advocacy groups and others about how to advance ME/CFS research.

Submission deadline: April 15, 2019 - EXTENDED TO MAY 1, 2019

The online submission form must be used.

To view the RFI and submit input:

https://www.ninds.nih.gov/RFI-NANDS-ME-CFS
 
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Diwi9

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This is the list of requests being solicited:

1) The most compelling ME/CFS research needs.

2) Strategies for overcoming scientific challenges or barriers to progress in ME/CFS research.

3) Potential research resources, tools, and/or materials that could help advance ME/CFS research or enable early career investigators and senior investigators new to the ME/CFS field to more easily conduct research.

4) Relevant considerations and strategies for clinical ME/CFS research, including the development and validation of data standards and outcome measures.

5) Overcoming challenges or barriers to establishing a career in ME/CFS research for early career investigators and those new to the field.

6) Approaches to strengthen research and career training for ME/CFS investigators.

7) Identifying related scientific areas that may be relevant to ME/CFS and strategies for establishing collaborations with experts in those areas to help advance ME/CFS research.

8) Approaches to reduce barriers that prevent individuals with ME/CFS from participating in research. For example, these might be logistical challenges, such as difficulty traveling to a study site, or might be because of an unwillingness to undergo certain types of research protocols.

9) Strategies for increasing ME/CFS research collaboration and communication between relevant stakeholders.

10) Other approaches that may improve the overall field of ME/CFS research.
 

Gemini

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*****UPDATE: the deadline for responses to this RFI has been extended to May 1, 2019*****

The NANDS Council Working Group for ME/CFS Research (https://www.ninds.nih.gov/About-NINDS/Who-We-Are/Advisory-Council/ME-CFS-Working-Group) is soliciting input on approaches and strategies to address the charge of the Working Group and will use the responses to this Request for Information (RFI) to help inform discussions of how to advance research on ME/CFS.

NIH is seeking input from all interested stakeholders, including researchers, health care providers, individuals with ME/CFS, patient advocates and health advocacy organizations, scientific or professional organizations, federal agencies, as well as other interested members of the public. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership as a whole.

To view the RFI and submit comments, please visit: https://www.ninds.nih.gov/RFI-NANDS-ME-CFS.
 

Mary

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I'm writing a response, primarily just stating the urgent need for adequate funding, reminding them that Francis Collins said in 2015 that funding would be substantially increased - right - it went all the way from $6 million to $15 million. While MS funding, with roughly half the patient population of ME/CFS, went from $94 million in 2015 to $117 million in 2019, an increase of $23 million, the increase alone being more than TOTAL ME/CFS funding in 2019.

The more who respond, the better --- you can submit your response through tomorrow.

This link shows NIH funding for individual diseases from 2015 through estimated 2020:
https://report.nih.gov/categorical_spending.aspx
 
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