USA: Interagency ME/CFS Working Group

Andy

Andy

Retired committee member
First Meeting of Interagency ME/CFS Working Group will be VideoCast
Led by NIH and CDC, U.S. Agencies are coming together to coordinate their efforts and facilitate stakeholder input through the new Interagency ME/CFS Working group.

Air date: Tuesday, August 11, 2020, 3:00 PM EDT / 8:00 PM UK / 9:00 PM EU

Description: The Interagency ME/CFS Working Group will hold its first meeting

Runtime: 2 hours

For more information visit this link.
 
There is no more information behind the link so I gathered some.

NIH staff talked about their plans for an interagency ME/CFS working group and there is a transcript here

https://www.nih.gov/research-traini...ecfs/nih-me/cfs-advocacy-call-october-17-2019

It's meant to bring various agencies and patients together on the same table.

Hopefully that means no more weird BPS research being funded because patients can stop it before it happens.
 
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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. Please see the attached agenda for additional information.

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 regret that we may not be able to respond during the meeting to all questions that we receive, but we will try to answer as many as possible in the time allotted.

Meeting information, including agenda and link to the videocast, will be posted on the Trans-NIH ME/CFS website.
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Interagency ME.PNG

 
An NIH email received today:

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. Please see the attached agenda for additional information.

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 regret that we may not be able to respond during the meeting to all questions that we receive, but we will try to answer as many as possible in the time allotted.

Meeting information, including agenda and link to the videocast, will be posted on the Trans-NIH ME/CFS website.

Agenda

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)​
 
It will be interesting to hear what the CDMRP and VA folks talk about as their involvement in ME/CFS is new via Congressional action. Interesting also that the two most significant non-profits in the US for ME are involved.

I'm hoping something positive comes from this. I know many criticise Walter Koroshetz but at least he is participating and listening. Disappointed they couldn't get someone from NIAID to be involved given the discussion on COVID-19 as a possible trigger and the research needed to follow the infectious onset.
 
TL;DR from Wilhelmina and Claudia, only patient representatives: we are doing our job, you are not. Koroshetz did not bother responding. The patient community is still doing the bulk of the work, especially in dealing with ongoing systemic discrimination in clinical care.

Great comment from Claudia on pointing out that every outbreak of post-viral illness is treated as an entirely unique thing, every time and again with COVID-19. That guarantees failure and it's absurd that it's (so far) happening again. Great parting comments from Claudia Carerra that the current pace is not enough, the pace should be months, not years. Incremental change is not OK here. Needs a sea change, top-down focused effort. Long COVID requires a scale that matches the response to acute COVID.

Koroshetz mentions an unannounced NIH program dealing with cognitive and neurological symptoms.

NIAID has a program with a cohort of 300, hoping to 1000, that has planned follow-ups up to a year (or 2?). And a few more studies. From Joe Breen. Hints of many incoming announcements but we've heard that before.

I get the impression that some understanding that this is actually serious is slowly growing, just not quite realized yet. Decades of denial have made this very difficult, so much inertia in the wrong direction.
 
Some interesting studies were discussed. But its important to note that NIH's COVID strategy covers testing, vaccines, treatment of acute COVID and prevention - and virtually nothing about longhaul. Claudia's point was right on - NIH needs to put as much urgency, focus, commitment, resources, and strategic thinking on longhaul and the intersection with ME as they put on the rest.
 
wigglethemouse said:
Thanks for the short summary @rvallee . Was there any info from the CDMRP/VA attendees as ME researchers recently got access to this funding opportunity.
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Yes, I joined in right during that discussion and didn't quite follow everything but it was an overview of how it got used in the past, for example with breast cancer, and how it could be used for ME. Also some discussion over how defense department funds were used for GWI and how it can be used to fund ME research, although seeing how things are just as stalled with GWI as they are with ME, not much hype to be had there.

Too much details for me to remember but it made a good part of the discussion so I'm sure it will be detailed in the next few days. Of course that's all hypothetical funding and it's lacking leadership and coordination but this has recently been made available so maybe it will help.
 
Andy said:
An NIH email received today:

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. Please see the attached agenda for additional information.

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 regret that we may not be able to respond during the meeting to all questions that we receive, but we will try to answer as many as possible in the time allotted.

Meeting information, including agenda and link to the videocast, will be posted on the Trans-NIH ME/CFS website.

Agenda

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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A recording of his 2-hour meeting can now be watched here: https://videocast.nih.gov/watch=38201


 
from OMF email
OMF's ME/CFS and COVID-19 Research Project
Brought into National Focus

Open Medicine Foundations’ ME/CFS and COVID-19 research project was brought into national focus at a recent, federally-sponsored meeting of the first-ever virtual Interagency ME/CFS Working Group Meeting.

This first meeting of the new Working Group focused on ME/CFS and those suffering from post-COVID-19 symptoms (aka “long-haulers”).

This meeting, unique in its scope, was the first time that representatives of multiple federal research programs met collectively with three leading ME/CFS focused nonprofits, OMF, Solve ME/CFS Initiative and #MEAction.

Hosted by the NIH and the CDC, representatives of federal research programs included:
  • Three branches of the NIH
  • Three branches of the CDC including the Domestic COVID Response Program
  • Department of Defense: CDMRP
  • Veterans Administration: Gulf War Research Program
  • Department of Education: Office of Special Education Programs
  • Social Security Disability Office
OMF’s CEO & Founder/President Linda Tannenbaum and OMF’s Chief Medical Officer Ron Tompkins provided an update on the OMF-funded study on COVID-19’s possible conversion to ME/CFS.

OMF looks for every opportunity to accelerate research. The study will examine individuals from early severe COVID-19 illness through their recovery and rehabilitation phase, offering an unprecedented chance to identify biomarkers and discover drug targets and prevention strategies for ME/CFS.

Interagency.png


View the full recording of the Interagency Working Group meeting here.

You can view OMF's PowerPoint presentation from the working group here.
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From an NIH email.

News from CDC: 2nd Interagency ME/CFS Working Group Meeting, February 25-26, 2021

**PLEASE NOTE THAT TO ATTEND THE MEETING ON BOTH DAYS, YOU WILL NEED TO REGISTER FOR EACH DAY SEPARATELY**

MARK YOUR CALENDARS


Thursday, February 25, 2021, 1:00-5:00 PM ET & Friday, February 26, 2021, 1:00-3:00 PM ET


2nd Interagency ME/CFS Working Group Meeting

The working group will address workforce development and education of ME/CFS healthcare providers as well as share updates about current activities to address prolonged illness following COVID-19, also referred to as “long COVID.”


register in advance for this webinar by clicking the link or copying and pasting the link into your web browser.

https://cdc.zoomgov.com/webinar/register/WN_E-Cd1WZSThuXBM5OqZdKCw

On the registration page, please register for each day separately.
after registering, you will receive a confirmation email containing information about joining the webinar.

AGENDA

February 25, 2021
1:00–5:00 PM Eastern Time

  1. Welcome
  2. Goals of the Working Group and Meeting
  3. ME/CFS Health Care Workforce Development: Documentation of Need
  4. Challenges from Clinician Viewpoint
  5. Description of Current Initiatives to Address and Discussion
  6. Other Business
  7. Discussion/Q&A
February 26, 2021
1:00–3:00 PM Eastern Time

  1. Welcome and Goal of Meeting
  2. What We’re Learning about Long COVID
  3. Research on Long COVID
  4. Other Activities
  5. Cross-agency Collaboration
  6. Discussion/Q&A


To ask a question within the Zoom webinar platform during the meeting, please:

  • Click on the “Q&A” button.
  • Type your question in the “Q&A” box.
  • Submit your question.

Reasonable Accommodation (RA). CDC supports participation in all events by persons with disabilities. If you require a reasonable accommodation for a disability, please contact CFS@cdc.gov as soon as possible with details of your request.
 
I have watched the whole thing.

One if the striking moments was a discussion on clinical trials and both the CDC and NIH said they were quite adverse to risk.

In my view, while yes, we need to maximize risk mitigation in clinical trials, one cannot help but think about whether this consideration is applied evenly across all diseases? Monoclonal antibodies are risky, chemo drugs are risky, just to name 2.

Every intervention involves risk, including doing nothing. Does it mean they will only accept vitamin trials?
 
They were also suggesting that clinical trials would not be open to all PWME, but to a subset, giving an example of early diagnosis, viral onset. Seemingly old timers are a tough nut to crack.
 
Milo said:
I have watched the whole thing.

One if the striking moments was a discussion on clinical trials and both the CDC and NIH said they were quite adverse to risk.

In my view, while yes, we need to maximize risk mitigation in clinical trials, one cannot help but think about whether this consideration is applied evenly across all diseases? Monoclonal antibodies are risky, chemo drugs are risky, just to name 2.

Every intervention involves risk, including doing nothing. Does it mean they will only accept vitamin trials?
Click to expand...

Yet there were trials of monoclonal antibodies for acute COVID19. NIH (and other agencies) can innovate for COVID19 (and longCOVID) but when it comes to ME, nope.
 
Andy said:
From an NIH email.

News from CDC: 2nd Interagency ME/CFS Working Group Meeting, February 25-26, 2021

**PLEASE NOTE THAT TO ATTEND THE MEETING ON BOTH DAYS, YOU WILL NEED TO REGISTER FOR EACH DAY SEPARATELY**

MARK YOUR CALENDARS


Thursday, February 25, 2021, 1:00-5:00 PM ET & Friday, February 26, 2021, 1:00-3:00 PM ET


2nd Interagency ME/CFS Working Group Meeting

The working group will address workforce development and education of ME/CFS healthcare providers as well as share updates about current activities to address prolonged illness following COVID-19, also referred to as “long COVID.”


register in advance for this webinar by clicking the link or copying and pasting the link into your web browser.

https://cdc.zoomgov.com/webinar/register/WN_E-Cd1WZSThuXBM5OqZdKCw

On the registration page, please register for each day separately.
after registering, you will receive a confirmation email containing information about joining the webinar.

AGENDA

February 25, 2021
1:00–5:00 PM Eastern Time

  1. Welcome
  2. Goals of the Working Group and Meeting
  3. ME/CFS Health Care Workforce Development: Documentation of Need
  4. Challenges from Clinician Viewpoint
  5. Description of Current Initiatives to Address and Discussion
  6. Other Business
  7. Discussion/Q&A
February 26, 2021
1:00–3:00 PM Eastern Time

  1. Welcome and Goal of Meeting
  2. What We’re Learning about Long COVID
  3. Research on Long COVID
  4. Other Activities
  5. Cross-agency Collaboration
  6. Discussion/Q&A


To ask a question within the Zoom webinar platform during the meeting, please:

  • Click on the “Q&A” button.
  • Type your question in the “Q&A” box.
  • Submit your question.

Reasonable Accommodation (RA). CDC supports participation in all events by persons with disabilities. If you require a reasonable accommodation for a disability, please contact CFS@cdc.gov as soon as possible with details of your request.
Click to expand...
Video recordings & lots of slide files are now available for US Interagency ME/CFS Working Group Meeting held on February 25-26, 2021.
https://www.cdc.gov/me-cfs/programs/meetings.html#anchor_1617813784584
Click to expand...
 
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