NIH: Request for Input on How To Advance ME/CFS Research, Deadline May 1, 2019; Summary Report Sept. 4, 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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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
All of the input received, a fair amount by the looks of it, was posted yesterday by NIH here:

https://www.ninds.nih.gov/node/18206

A summary Report of the input will be presented at the NANDS Council Meeting on September 4, 2019. Portions of the meeting will be videocast and can be seen at: https://videocast.nih.gov

NIH NANDS Council Mtg  Sept 4 2019.PNG

The summary Report will also be posted after the Council Meeting.
 
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Gemini

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NIH Videocast Website: http://videocast.nih.gov/
AGENDA

September 4, 2019

OPEN SESSION

12:30 p.m.

I. Call to Order and Opening Remarks
Dr. Walter Koroshetz, Chairperson, Director, NINDS

12:35 p.m.

II. Report of the Director, Division of Extramural Activities, NINDS
Dr. Robert Finkelstein

A. Consideration of Minutes of May 23-24, Meeting

B. Confirmation of Dates for Future Council Meetings

Wed. & Thurs., February 5-6, 2020

Wed. & Thurs., May 27-28, 2020

Wed. & Thurs., September 9-10, 2020

Wed. & Thurs., February 10-11, 2021

Wed. & Thurs., May 26-27, 2021

Wed. & Thurs., September 8-9, 2021

C. Other Items

Expedited Review Process

Extramural Announcements

12:45 p.m.

III. Report of the Director, NINDS
Dr. Walter Koroshetz

1:05 p.m.

IV. Discussion of Director’s Report

1:20 p.m.

V. ME/CFS Working Group Report to Council
Dr. Andrew Breeden, Health Program Specialist, NINDS
Dr. Steven Roberds, Chief Scientific Officer, Tuberous Sclerosis Alliance

2:05 p.m.

VI. 2019 ADRD Summit Report
Dr. Rod Corriveau, Program Director, NINDS
Dr. Julie Schneider, The Deborah R. And Edgar D. Jannotta Presidential Professor of Pathology and Neurological Sciences,
Associate Director, Rush Alzheimer's Disease Center, Rush University Medical Center

2:45 p.m.

BREAK

3:00 p.m.

VII. Update from the Scientific Director of Intramural Research
Dr. Lorna Role, Scientific Director, NINDS

4:00 p.m.

VIII. NINDS Early Stage Investigator Analysis
Dr. William Daley, Health Program Specialist, NINDS

4:30 p.m.

IX. Initiatives Requiring Concept Clearance

6:00 p.m. **

ADJOURNMENT
 
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Do you notice that every NIH person with a specific Institute listed is from NINDS? Do you suppose that's meaningful?
 

Gemini

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281 responses to the ME/CFS RFI (input from the public) were received by NIH the largest portion of them from patients; no summary of their content was presented, however.

Three recommendations were proposed:

1. Form an Interagency Collaborative to Advance ME/CFS Research similar to ICARE (https://icarerp.nih.gov)

2. Expand the number of new and early career ME/CFS researchers

3. Devise an Overarching ME/CFS Research Strategy

NANDS Council voted unanimously to accept the recommendations. More detail about them is in the Report:
https://www.ninds.nih.gov/sites/def...cil_working_group_for_mecfs_research_508c.pdf.

Dr. Roberds, presenter, will be featured speaker on the next NINDS ME/CFS Advocacy Call October 17, 2019.