USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

Dolphin said:
From: NIH MECFS Information <NIH-MECFS_INFORMATION@LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
Sent: Thursday, April 11, 2024
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: News from NIH: Save the Dates for upcoming events


Please mark your calendar for these upcoming ME/CFS-related events:



May 2, 2024- PI-ME/CFS Intramural Study Symposium: This will be a hybrid meeting focusing on findings from the NIH ME/CFS Intramural Study. More information about the symposium, including agenda and registration, coming soon!



May 15, 2024—Meeting of the National Advisory Neurological Disorders and Stroke Council: The ME/CFS Research Roadmap will be discussed during this meeting. The open portion of the meeting will begin at 10:00AM ET and will be livestreamed on NIH Videocast. Meeting agenda will be available soon.


May 28, 2024—NIH ME/CFS Telebriefing/Webinar: The webinar will include updates from NIH on ME/CFS-related research activities and a scientific presentation by Dr. Avindra Nath, M.D., NINDS Clinical Director. Registration and Zoom details will be available soon.
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https://videocast.nih.gov/watch=54675

ME/CFS Symposium

Air date: Thursday, May 2, 2024, 9:00:00 AM

Time displayed is Eastern Time, Washington DC Local

Description: The purpose of the conference is to present findings the from ME/CFS study and the article Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome to the ME/CFS community. The ME/CFS conference will play a crucial role in advancing the mission of the National Institutes of Health (NIH) by fostering collaboration, disseminating cutting-edge research, and promoting a deeper understanding of ME/CFS. By convening experts, researchers, and healthcare professionals, the conference will serve as a platform for the exchange of knowledge, innovative ideas, and scientific findings related to ME/CFS. This is a one-time conference that has been scheduled to coincide with the publication of the article Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome in Nature magazine.
Author: Dr. Brian Walitt
Runtime: 7 hours

https://twitter.com/user/status/1781458815998640454
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Dolphin said:
Recording of NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar is now available




Speakers included
Vicky Whittemore; Beth Pollack; Ilene Ruhoy; Petra Klinge; Anne Maitland; Julie Rehmeyer; Laura Pace; Beth Pollack; Natalie Thomas; Emelia von Saltza; Roumiana Boneva; Elizabeth Unger
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Transcript finally up for NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar
https://event.roseliassociates.com/...ar-7_Less-Studied-Path_Open-Session_final.pdf


2024-04-21 21_49_06-ME_CFS Research Roadmap.png

https://twitter.com/user/status/1782153145004548289
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Great follow up by Zeynep

https://www.nytimes.com/live/2024/04/16/opinion/thepoint/long-covid-nih-research?smid=url-share


Bernie Sanders, who chairs the Senate’s Health, Education, Labor and Pensions Committee, has proposed allocating $1 billion annually for 10 years to the National Institutes of Health for long Covid research. One potential stumbling block to this good idea is bipartisan criticism of the N.I.H.’s sluggishness in producing useful results from the initial $1.15 billion allocated to long Covid.

It’s in that context the current N.I.H. director, Dr. Monica Bertagnolli, responded to a question about long Covid last week, saying, “We see evidence of persistent live virus in humans in various tissue reservoirs.” She said that the virus can “live a long time in tissues” and that this is “likely one of the ways that it produces some of its terrible symptoms.”

The statement rattled researchers and shocked communities of long Covid patients. Proving persistent live virus that can replicate long after the acute phase and showing that it relates to long Covid symptoms would be a Nobel-territory breakthrough and point to effective treatments.

However, while viral persistence is one hypothesized mechanism for long Covid, as far as I knew, only viral remnants — leftover virus pieces that cannot replicate — have been shown, not persistent live whole virus. Further, such remnants haven’t correlated with long Covid symptoms. (Some healthy and sick people have them.)

Patients were abuzz. Was this more unacceptable sluggishness? Was the N.I.H. sitting on crucial unpublished information? Was the N.I.H. director completely out of touch with the research? Had they all misunderstood the science?

I reached out to the N.I.H. The answer turns out to be mundane. Dr. Bertagnolli said she “misspoke” and had “meant to say ‘viral components’ rather than ‘live virus.’” The N.I.H. also confirmed to me such remnants have not yet been shown to correlate with long Covid symptoms.

Viral remnants may still play a role — maybe only some people are sensitive to them — or maybe leftover viral components are common and harmless. The N.I.H. also told me this is “an area of active investigation,” as it should be.

It’s good that Dr. Bertagnolli is so engaged with long Covid, and misspeaking during an interview is human. Hopefully, the institution keeps in mind that suffering patients are hanging on their every word.
 
Zeynep said:
My bigger question is why the field doesn’t quickly notice such a big statement — with huge implications if true — and ask for clarification.
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The patient community sure has. It's been very noticeable actually. Now that is an even bigger question. How this entire profession is constantly several steps behind sick people who are exhausted and suffering from significant cognitive problems. It always takes them years to get to where the patient community immediately notices. Like a professional athlete who gets beaten by a baby at arm wrestling. It's ridiculous.
 
Dolphin said:
Transcript finally up for NIH #MECFS Research Roadmap: Lesser Studied Pathologies Webinar
https://event.roseliassociates.com/...ar-7_Less-Studied-Path_Open-Session_final.pdf
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I had a look through the transcript. I think it may be just as well that it has raised no discussion here. It is the usual ramble about muddled vague concepts without any data. I am a bit surprised that NIH should host this but free speech is free speech.

It would be nice to see some sort of critical academic discussion though.
 
Jonathan Edwards said:
I had a look through the transcript. I think it may be just as well that it has raised no discussion here. It is the usual ramble about muddled vague concepts without any data. I am a bit surprised that NIH should host this but free speech is free speech.

It would be nice to see some sort of critical academic discussion though.
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Thanks.
I actually thought there were some interesting talks in the metabolism webinar e.g. Sheng Li [Jackson Laboratory] and the genetics webinar. Hadn't watched the "lesser studied pathologies" webinar --- seems there's no rush!
 
NIH, 4/24/24: 'NIH RECOVER makes long COVID data easier to access’

'Deidentified data from thousands of adults with long COVID are now available to researchers’

'Secure data from more than 14,000 adults who participate in NIH observational research on long COVID are now available to authorized researchers through BioData Catalyst (BDC). BDC is a cloud-based ecosystem developed by NHLB part of NIH, to accelerate research on heart, lung, blood, and sleep disorders.’

'The addition of RECOVER data to BDC can help investigators identify and explore long COVID connections that may benefit from or inform future studies...'By making RECOVER data more accessible by adding it to a central ecosystem, experts aim to find answers sooner.’

—
Video with Dr. David Goff from NIH NHLBI account, Senior Scientific Program Director for the RECOVER Observational Consortium Steering Committee and director of the Division of Cardiovascular Sciences at NHLBI:

“We’re releasing data on over 9,000 adults from our Adult Cohort study through NHLBI’s BioData catalyst platform. This will allow researchers to ask new questions, make new discoveries that will hopefully lead to better care and outcomes for these patients. In the near future, we’ll be releasing larger datasets from the adult cohort followed shortly thereafter by data from the pediatric cohort. This is great news for the biomedical research community and better news for patients suffering with Long COVID as we look forward to discoveries that improve patient care and outcome.”
 
From: NIH MECFS Information List <NIHMECFSInformationList@mail.nih.gov>
Date: Wed 8 May 2024
Subject: News from NIH: Registration now open for the NIH ME/CFS Webinar on May 28
To: <NIH-MECFS_INFORMATION@list.nih.gov>


NIH’s next ME/CFS Webinar will be held on May 28, 2024 from 1:00 – 2:00 pm ET. The webinar will include updates from NIH on ME/CFS-related research activities; a scientific presentation by Avindra Nath, M.D., NINDS Clinical Director and Senior Investigator; and a Q&A with panelists. Please register in advance.



During the webinar, attendees will have the opportunity to ask questions out loud or submit written questions in the Zoom Q&A box. For those on the phone, please dial *9 to raise/lower your hand and *6 to mute/unmute. Additional instructions for joining by phone are on the Zoom support website. We regret that we may not be able to respond to all questions that we receive, but we will try to answer as many as possible in the time allotted. The webinar will be recorded and posted on the NIH ME/CFS website after the event.


Regards,

The Trans-NIH ME/CFS Working Group

https://twitter.com/user/status/1788268935315681361
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A good blog from Cort about NIH support of ME/CFS research (more accurately, the lack of it). Includes an interview with Vicky Whittemore, who does her best for ME/CFS in difficult circumstances. Vicky seems to be hoping that some small businesses will move forward on clinical trials. I just hope those businesses aren't the red lights and alkaline water brigade...

I'd sum things up as 'we have a research roadmap, but don't look to the NIH to do anything with it'.

https://www.healthrising.org/blog/2024/05/13/nih-chronic-fatigue-syndrome-whittemore/
 
From: NIH MECFS Information <NIH-MECFS_INFORMATION@LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
Sent: Tuesday, May 14, 2024
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: Reminder: NIH ME/CFS Research Roadmap presentation at the NANDS Council Meeting on May 15


The ME/CFS Research Roadmap will be discussed during the National Advisory Neurological Disorders and Stroke Council meeting on Wednesday, May 15, 2024 . The open portion of the meeting will begin at 10am ET and the Roadmap will be presented from 1:30 – 2:30pm.


The meeting will be livestreamed on NIH videocast. For the agenda and other details, please visit the event page.
 
Dolphin said:
From: NIH MECFS Information <NIH-MECFS_INFORMATION@LIST.NIH.GOV> On Behalf Of NIH MECFS Information List
Sent: Tuesday, May 14, 2024
To: NIH-MECFS_INFORMATION@LIST.NIH.GOV
Subject: Reminder: NIH ME/CFS Research Roadmap presentation at the NANDS Council Meeting on May 15


The ME/CFS Research Roadmap will be discussed during the National Advisory Neurological Disorders and Stroke Council meeting on Wednesday, May 15, 2024 . The open portion of the meeting will begin at 10am ET and the Roadmap will be presented from 1:30 – 2:30pm.


The meeting will be livestreamed on NIH videocast. For the agenda and other details, please visit the event page.
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"10am ET and the Roadmap will be presented from 1:30 – 2:30pm" "1.30pm ET" is roughly 6.30pm British Summer Time?

https://savvytime.com/converter/est-to-gmt
 
Re the presentation to NANDS Council about the Roadmap presentation. Vicky Whittemore, Maureen Hanson and Cindy Bateman are doing very good work to move the understanding of ME/CFS forward.

In the questions there was good focus on biobanking, including post-mortem samples. Also on patient registries/health records.

There was an encouraging comment about work NIH is doing to facilitate the careers of young researchers interested in ME/CFS.
 
Wonderful comment from Cindy Bateman towards the end that people who have been sick with ME/CFS for 10 or even 30 years are not impressed with clinical trials of exercise or sleep hygiene. Koroshetz came across much less well than the three woman; he seems not to have learned much about ME/CFS despite his ongoing involvement in ME/CFS initiatives.

The roadmap report was received well by the council members. I think that will have been powerful advocacy in terms of getting influential people up to speed on ME/CFS.
 
I was reminded of Jonathan's comments re unfounded general statements "multi system" disease, ("copious" - my term) evidence of immune dysregulation, exhausted immune cells etc. However, this was really about judging the reaction to the research suggestions made in the NIH Roadmap webinars and [as per Hutan's comments (above)] I was generally reassured - pleased to hear references to genetic studies etc. @Simon McGrath

Hopefully the transcript will be out shortly (along with the video) - the important thing is the announcement of funding - when does that get announced?
 
---------- Forwarded message ---------
From: NIH MECFS Information List <NIHMECFSInformationList@mail.nih.gov>
Date: Wed, May 15, 2024
Subject: News from NIH: ME/CFS Research Roadmap now available!
To: <NIH-MECFS_INFORMATION@list.nih.gov>


The NIH ME/CFS Research Roadmap was approved by the NANDS Council this afternoon. To learn more about the ME/CFS Research Roadmap, visit the ME/CFS Research Roadmap Working Group website. Click here to read the report.


A recording of the full Council meeting will be posted to NIH videocast website soon.

https://twitter.com/user/status/1790841706809553225
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Sean said:
A trial to test two drugs (modafinil and solriamfetol) approved by the Food and Drug Administration to treat people who have problems staying awake during the day, known as hypersomnia.

Have they not considered that patients are sleeping a lot more because they need to?

I can't think of a worse thing to do to an ME patient who needs to sleep than force them not to. In my experience it is one of the fastest and most potent ways to induce a serious crash. Utter madness.

This. It is the one possibility virtually everybody is doing everything they can to avoid examining, for fear it might be true.
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Exactly this .
Sleep hygiene rarely makes improvements . We know so little about sleep , yet insistence is made on mucking about with it.
Many people have been made severe via sleep hygiene. It's a first initiative, usually prior to GET .thinking of Maddy Bourlet (? Spelling may be suspect) a young girl who had this fate @dave30th may recall her. I think he mentioned her in a past blog/ article , but I could be mistaken.
 
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