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NIH Interagency ME/CFS Working Group Meeting August 11, 2020 --Videocast

Gemini

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The Interagency ME/CFS Working Group will hold its first meeting on August 11, 2020 from 3:00 – 5:00 pm ET.

The meeting will be livestreamed on https://videocast.nih.gov/watch=38201 and will also be archived for future viewing.

The meeting will begin with updates from federal agencies on their ME/CFS-related efforts. The updates will be followed by a panel discussion on the Federal and nonprofit community response to COVID-19 and its impact on individuals with ME/CFS.

Panelists will include representatives from ME/CFS advocacy and research organizations. A question and answer session will conclude the meeting.

For the question and answer session, we invite questions from the public about the Interagency ME/CFS Working Group and topics on the agenda. Questions will be selected ahead of the meeting and we request that you submit them to MECFSInteragencyWG@ninds.nih.gov.

Please send your questions in by close of business (COB) Thursday, August 6, 2020...we will try to answer as many as possible in the time allotted.
 

Gemini

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Interagency ME/CFS Working Group Meeting Agenda

August 11, 2020 3:00 – 5:00 pm Eastern Time

3:00 – 3:45 pm EDT

1. Introductions – Drs. Inger Damon (CDC) and Walter Koroshetz (NIH)

2. Goals of the Working Group – Dr. Walter Koroshetz

3. Brief Agency Updates (5 minutes each)
.....a. CDC – Drs. Inger Damon and Elizabeth Unger
..........i. Clinical Treatment of ME/CFS Guideline Development – Dr. Elizabeth Unger
...............1. Discussion

.....b. NIH – Drs. Walter Koroshetz and Vicky Whittemore

.....c. CDMRP – Dr. Kristy Lidie

.....d. VA – Dr. Karen Block

.....e. Q&A with the community (questions to be submitted via email prior to the meeting)

3:45 – 3:55 pm Break

3:55 – 5:00 pm


4. Federal and Non-profit Response to COVID-19 – Panel discussion led by Dr. Walter Koroshetz, NINDS

Panelists: All Federal Representatives; Dr. Brian Walitt, NIH Intramural; Jaime Seltzer, #MEAction; Linda Tannenbaum and Dr. Ron Tompkins, Open Medicine Foundation; Drs. Sadie Whitaker and Oved Amitay, Solve ME/CFS Initiative

5. Q&A with the community (questions to be submitted via email prior to the meeting)
 
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Gemini

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For the question and answer session, we invite questions from the public about the Interagency ME/CFS Working Group and topics on the agenda.
Questions submitted:

Congress has allocated significant funding for COVID-19 research; numerous researchers are applying for grants; and NIH has changed its business and management practices to harness the right skills to expedite needed work. How can these "positive actions" benefit "long hauler"COVID-19 and ME/CFS patients, specifically:

1. NIH's "RADx Initiative" should encompass acute and "long hauler" COVID-19 phases of disease. Will this Working Group take steps to ensure this is the case allowing for the rapid development of diagnostic tests and treatments for "long hauler" COVID-19 and ME/CFS patients? Source: "Rapid Scaling Up of COVID-19 Diagnostic Testing in the United States--The NIH RADx Initiative," NEJM, July 22, 2020.

2. Dr. Judith Aberg and her multi-discipline teams (Mt. Sinai, NYC) have developed "COVID-19 Treatment Guidelines" and initiated a number of treatment trials. ME/CFS also requires a multi-discipline approach (i.e., Infectious Diseases, Immunology, Neurology, Cardiology, Rheumatology, Integrative Physiology, Occupational Therapy, etc.). Will this Working Group take steps to ensure Dr. Aberg's on-going work encompasses the "long hauler" COVID-19 phase of disease and allows for similar guideline development and treatment trials for "long hauler" COVID-19 and ME/CFS patients? Source: https://videocast.nih.gov/watch=38095
[Note: at 58:07 on the video, Dr. Aberg covers "long haulers" and needed clinical trials]

3. Large sample sizes are much needed for ME/CFS studies. With a target of 1 million participants, NIH's massive "All Of Us" Research Program currently has 350,000, including some with COVID-19 and 2500 with ME/CFS. Among its goals the Program aims to reach those individuals underrepresented in medical research and the disabled. Will this Working Group support an NIH Communications Program to inform rarely studied homebound/bedbound ME/CFS patients and those unable to work about their opportunity to participate in "All Of Us," and in other Registries, to increase study sample sizes? Source: https://directorsblog.nih.gov/2020/6/16/nihs-all-of-us-program-joins-fight-against-pandemic/ ;

4. Disturbingly, CDC recently compiled a shortened, incomplete list of patient-reported "long hauler" COVID-19 symptoms [Indiana University School of Medicine, "COVID-19 'Long Hauler' Symptoms Survey Report, July 25, 2020, Figure 4] distorting the disease's body-wide impact; omitting the severest symptoms; hindering proper clinical care; and projecting a scientifically flawed definition of the disease. The sheer number of symptoms experienced by individual patients is, in itself, a distinguishing feature of the disease. With a history of disseminating ME/CFS misinformation, some of it outright harmful, going forward how can this Working Group ensure the accuracy and integrity of information about "long hauler" COVID-19 and ME/CFS put forth by government agencies and personnel?

5. Will this Working Group assign a Coordinator to facilitate communication and collaboration between ME/CFS and "long Hauler" COVID-19 researchers and their respective Centers of Excellence, responsibilities to include: (1) identifying speakers and topics for the NIH COVID-19 Lecture Series; (2) organizing virtual conferences; (3) arranging publication of CDC and NIH interim Clinical Study and MCAM findings; and (4) tracking fast changing COVID-19 science then organizing and disseminating findings pertinent to "long hauler" COVID-19 and ME/CFS?

@Janet Dafoe
 
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