Trans-NIH ME/CFS Working Group Telebriefings 2020-2021 (next telebriefing March 30 2021)

Anecdotally, regarding raising private funds. When I've talked to people with money, they would rather fund established research on what they perceive as a "legitimate" disease. Think cancer, Parkinson's and AIDS, certainly not ME/CFS.

The idea of throwing their money at what they perceive as a "junk" medical diagnosis with few researchers and small unreplicated studies seems risky and foolish to them. When they learn the NIH doesn't consider ME/CFS important enough to fund much, it just reinforces that opinion.
 
Webdog said:
Anecdotally, regarding raising private funds. When I've talked to people with money, they would rather fund established research on what they perceive as a "legitimate" disease. Think cancer, Parkinson's and AIDS, certainly not ME/CFS.

The idea of throwing their money at what they perceive as a "junk" medical diagnosis with few researchers and small unreplicated studies seems risky and foolish to them. When they learn the NIH doesn't consider ME/CFS important enough to fund much, it just reinforces that opinion.
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I have no real experience of looking for funds from seriously wealthy people but if this experience was a more general trend it might suggest that talking down NIH interest in ME/CFS might not be a good strategy.
 
Notice of latest telebriefing - November 5, 2020, 11:00 am until 12:00 pm ET

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on November 5, 2020, 11:00 am until 12:00 pm ET. Our guest speaker will be Allison Kanas, Administrative Director & Director, Community Outreach & Engagement at the Center for Solutions for ME/CFS at Columbia University.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1608562314?pwd=Ny92SU81SFdJV1ZTL0I1WFUwalVjdz09

Passcode: MECFS2020


To join by telephone:

Dial(for higher quality, dial a number based on your current location):

US: +1 669 254 5252 or +1 646 828 7666

Webinar ID: 160 856 2314

Passcode: 781191965

International numbers available: https://nih.zoomgov.com/u/avs1mY8cp


During the Q&A session, participants will be invited to submit questions using the Chat feature. Pre-registration for the telebriefing is not required.


Regards,

The Trans-NIH ME/CFS Working Group
 
Andy said:
Notice of latest telebriefing - November 5, 2020, 11:00 am until 12:00 pm ET

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on November 5, 2020, 11:00 am until 12:00 pm ET. Our guest speaker will be Allison Kanas, Administrative Director & Director, Community Outreach & Engagement at the Center for Solutions for ME/CFS at Columbia University.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1608562314?pwd=Ny92SU81SFdJV1ZTL0I1WFUwalVjdz09

Passcode: MECFS2020


To join by telephone:

Dial(for higher quality, dial a number based on your current location):

US: +1 669 254 5252 or +1 646 828 7666

Webinar ID: 160 856 2314

Passcode: 781191965

International numbers available: https://nih.zoomgov.com/u/avs1mY8cp


During the Q&A session, participants will be invited to submit questions using the Chat feature. Pre-registration for the telebriefing is not required.


Regards,

The Trans-NIH ME/CFS Working Group
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Just highlighting this is on tomorrow.
 
I think this is significant here, that for all the empty promises at the NIH, whether Collins' lies (sorry, he did lie to us) or Koroshetz overseeing it and not even being bothered by doing the very least minimum.

ME may have left the women's disease institute but it has not joined the neurological institute yet. We are still locked out in the shed behind the building. This isn't a finger to our face, it's a punch straight to the nose.

 
For what it's worth, I asked the following three questions:

Are there any plans to investigate physical abnormalities found in post-COVID/Long COVID cohorts in ME/CFS cohorts? Patients who receive a diagnosis of ME/CFS tend to have very little physical scans/exams, so there may be missed issues.
 [This one was answered on stream, and got the accolade of it being called "a great question" by, I think, Koroshetz.]

Additionally, could the NIH not direct all post-COVID/Long COVID studies that they fund to assess all their participants against ME/CFS criteria to gauge how many more ME/CFS diagnosed folks we might be seeing in the future?

Given how important, and disabling, PEM is to ME/CFS patients, how can it be ensured that researchers don’t just accept post-exertional fatigue as PEM?
 
There will be a transcript available, but here are some brief notes, that may or may not be entirely accurate:

Koroshetz - NIH
Showed some slides on studies of post-Covid symptoms e.g. a recent Spanish study finding 55% of hospitalised patients had fatigue after 3 months, with there being no difference between ward and IC patients.

Breen - NIH
There will be a post-Covid workshop on 3-4 Dec. It will be accessible to the public. Registration will start soon. The goal is to identify knowledge gaps. NINDS is funding research looking at post-Covid.

Nath - NIH
(As we have heard elsewhere), the NIH is using the ME/CFS study protocol on post-Covid patients. They are currently doing telephone screening and will bring people in for assessments soon. Re the ME/CFS study - they have processed 45 controls and 24 ME/CFS patients (of which 17 have been found to have ME/CFS). (This seems an incredibly low number after all this time.)

Dr Nath said that, with Covid, they couldn't bring more people in so they have decided to start analysing the data they have, and it is interesting (but no details about why it is interesting were given).

My comment - I'm not sure why people with non-Covid ME/CFS can't be brought in during the pandemic but post-Covid people can. It really sounds as though the NIH have drawn a line under the non-Covid ME/CFS study now, and are moving on to post-Covid. I guess it may not make much of a difference. Avi Nath mentioned that, with the results of the ME/CFS study, they can do more targeted investigations of the post-Covid people. I asked what he meant by that, what assessments were being dropped, but the question was not answered.

Whittemore - NIH
The trans-NIH working group is meeting monthly. They had hoped to launch a strategic planning process last Spring, but Covid happened. They hope to do it before the end of the year.

The CRC's are on their 4th year of 5 year funding (my comment - it's hard to believe that the time has gone so fast). thought is turning to how an ongoing effort on ME/CFS will be funded.

They had been planning a workshop on clinical endpoints/outcomes. That is now planned for Spring 2021.

Klimas was funded recently for work on post-Covid.

There will be a workshop in February focused on workforce development and medical education.
 
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Alison Kanas - Community Outreach and Engagement, Centre for Solutions for ME/CFS, Columbia University
Alison thanked everyone who had contributed to the Microbe Discovery Project. It helped Columbia demonstrate community engagement and be selected as a CRC. Columbia had made a website, facebookpage, twitter presence, developed You Tube channel, started a blog (reaching 62 countries). In 2019, they accepted 8 members for a community advisory committee, but weren't really sure what to do with them.

NIH has given them funding to provide a communication and engagement service for all of the CRCs. This has allowed them to put in the staff and other resources needed to really make use of the committee. So, the Community Advisory Committee serves the whole of the NIH CRC network. There are 14 members -
  • 6 Partner organisations including the CRCs, Solve and MEAction
  • 2 caregivers
  • 6 PwME
They communicate on Slack and will be setting goals for each of three working groups:
  • information dissemination
  • study feasibility
  • research priorities
(my comment - this seems really positive in terms of getting patient input. It would be good to know who the patient and caregiver representatives are.)

Breen - NIH
Map ME/CFS (database) should be publicly available in Jan 2021. (I'm not quite clear on what the database is - results from patient samples?)
Search ME/CFS - investigators will be able to search a bio-repository
(Sorry, I didn't note what was said about these facilities)

Post-Covid should shed light on ME/CFS e.g. there was a finding about abnormalities in iron metabolism that came out yesterday.

End
Avi Nath volunteered to answer questions that weren't answered during the session.
 
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Overall, compared to previous NIH Telebriefings, I thought this one was a lot more constructive and less frustrating. It seemed more respectful of the patient community. Progress is still terribly slow, and funding still horrendously inadequate. But perhaps post-Covid is making a difference to how important the ME/CFS work is.
 
One thing that stuck in my mind was the claim that the care of ME patients is likely to improve due to the creation of clinics to care for patients who have had COVID or have post-COVID/long COVID. Unfortunately I can't recall who said this but I did think it was a somewhat naive and overly optimistic statement.
 
Andy said:
One thing that stuck in my mind was the claim that the care of ME patients is likely to improve due to the creation of clinics to care for patients who have had COVID or have post-COVID/long COVID. Unfortunately I can't recall who said this but I did think it was a somewhat naive and overly optimistic statement.
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I believe it was Koroshetz who said this.
 
Hutan said:
My comment - I'm not sure why people with non-Covid ME/CFS can't be brought in during the pandemic but post-Covid people can. It really sounds as though the NIH have drawn a line under the non-Covid ME/CFS study now, and are moving on to post-Covid.
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That would be my cynical concern as well. Remember Nath had to be dragged into this and he said it was hard to get researchers involved. Everyone will be much more eager to study post-covid.

I could see this shift in focus from me/cfs to post-covid becoming all-consuming, with me/cfs becoming a passenger that could be dropped off. We don't even know that the two syndromes share an underlying pathophysiology and post-covid is likely as much if not even more heterogenuous than me/cfs.

If the focus turns from me/cfs to post-covid it could be an interminable year delay in completing the original in-house study.
 
Nath : "We have stopped taking skin biopsies and we will likely not do a lot of the -omic studies that were part of the original protocol since we *** now know what pathways *** to look for in our investigations."
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At first I thought this meant that they were giving up on -omics testing, but it actually sounds like they figured out what -omics tests to continue, because they're more likely to be relevant to the disease.
https://t.co/ojiQ26PRzc?amp=1
 
Forbin said:
At first I thought this meant that they were giving up on -omics testing, but it actually sounds like they figured out what -omics tests to continue, because they're more likely to be relevant to the disease.
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Presumably, it means they also don't consider SFN an avenue of interest or otherwise there is no reason to not continue skin biopsies.
 
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