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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

 

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

 

Transcript now up NIH #MECFS Research Roadmap: Circulation Webinar
https://event.roseliassociates.com/..._Webinar-8_Circulation_Open-Session_final.pdf

 

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.

 

https://twitter.com/user/status/1782427326967349433



“Well, it’s been corrected. Misspeaking happens.

My bigger question is why the field doesn’t quickly notice such a big statement — with huge implications if true — and ask for clarification.

She isn’t some lone PI and the statement was huge and contradicted known research.”

 

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.

 

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.

 

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

 

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.

 

"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

 

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.

 

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.