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

Long Covid in the media and social media 2022
A video with Avindra Nath speaking. He talks about a trial of treatments for Long Covid, and sounds committed to trying to understand Long Covid.
I really like Nath. I think he's the right person in the right place.

I'd really like to know why he's blocked from actually doing anything about it. What the hell is happening behind the scenes to create this impossible gridlock?
 
Yes, the lack of progress on the ME/CFS study does seem very odd. The idea that they couldn't recruit 40 people with ME/CFS over those years, especially when those participants would have benefitted personally from the detailed investigation, does not seem credible to me.

(I've said here before, I enquired about participating and, if eligible, would have seriously considered putting my son and I on a plane to get to the US for the trial. However, we had had the illness for over 5 years (but not six years) when I enquired, and the study wanted people who had been sick for less than 5 years. I find it hard to believe that I am so unusual in being interested to participate.)

Surely US patient charities and specialist ME/CFS clinicians tried hard to encourage people to be involved in the study, knowing how important it was? It would be good to hear more from these people about whether they think recruitment difficulties really was the reason for the terribly slow progress. @Medfeb
 
Yes, the lack of progress on the ME/CFS study does seem very odd. The idea that they couldn't recruit 40 people with ME/CFS over those years, especially when those participants would have benefitted personally from the detailed investigation, does not seem credible to me.

(I've said here before, I enquired about participating and, if eligible, would have seriously considered putting my son and I on a plane to get to the US for the trial. However, we had had the illness for over 5 years (but not six years) when I enquired, and the study wanted people who had been sick for less than 5 years. I find it hard to believe that I am so unusual in being interested to participate.)

Surely US patient charities and specialist ME/CFS clinicians tried hard to encourage people to be involved in the study, knowing how important it was? It would be good to hear more from these people about whether they think recruitment difficulties really was the reason for the terribly slow progress. @Medfeb
I have seen a lot of ME/CFS studies struggle with recruitment over the years.

As I said before, I think more people could put more effort into highlighting recruitment announcements online.
I can understand not wanting to promote fundraising for research but often people are recompensed to varying degrees when they take part in studies and sometimes will get their individual results which can be very interesting.

In this case, the criteria seemed to very strict.
I think I recall hearing something like 12** enquired which would be more than enough for most studies.

But I think they wanted laboratory evidence of an infection which for many people could be very hard to get and they seemed quick to exclude people in general.

With Covid, a lot more people have such evidence of an infection.
 
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[i also recall the initial control groups [per a supposedly mistakenly released draft at least] and true about the personnel selection. perhaps those will get official investigation at some point. the hiv/aids equivalent would have been to put aids deniers on the project, include a couple of diseases as control groups, and claim that one is a good control group because that disease is KNOWN to be caused by witchcraft. i think it was a version of lyme and fnd or so.]

but the clinical center is a valuable resource that m.e. needs and deserves. and it has to be done right.

do we have anything formally published? the last time we talked about a video or so, it was too confusing for me to figure out what the misdiagnosis rate was and why it was so high, or things like that. we, or i, didn't have a clear written presentation of the subject flow through the study. and that made the scant results hard to interpret. i cannot watch videos most of the time.

i'd like to have a better impression [in my limited knowledge] than that among the goals were to keep us quiet and perpetually hopeful that something useful is forthcoming [e.g. perhaps to not crash the gates like aids did], to faff around with anti-science [e.g. perhaps due to malevolence toward our population of unknown origin], and to provide implausible deniability [e.g. to make it look like they didn't particpate in teh attack on us]. i'd like to be wrong and i'd like lots and lots of subjects to participate in a solid study. i also don't want my ignorance here if any to dissuade such.
 
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lol @ (the powerhouse of the cell)

This is the change they found:

The investigator is cancer researcher Paul Hwang. The discovery involves the gene WAVE3, which helps determine the shape of cells (their cytoskeleton). The amount of this gene product was altered (raised) in the ME/CFS cohort.
 
NIH’s next ME/CFS telebriefing will be held on August 26, 2022 from 3:00 – 4:00 pm ET. The telebriefing will include updates from NIH on ME/CFS-related research activities and a presentation by Lily Chu, MD, MSHS, Vice President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), on highlights from the IACFS/ME 2022 Virtual Medical and Scientific Conference.

During the telebriefing, attendees will have the opportunity to ask questions out loud or to submit written questions in the Zoom Q&A box. 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.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1609957505


Or join by phone:

669 254 5252 US (toll free)

646 828 7666 US (toll free)

Meeting ID: 1609957505
 
Trans NIH ME/CFS Working group

About ME/CFS
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sometimes referred to as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), is a debilitating disease that lacks a universally accepted case definition, cause, diagnosis, or treatment. According to the CDC(link is external), more than one million Americans have CFS. At least one-quarter of individuals with ME/CFS are bedbound or housebound at some point in the illness and most never regain their pre-disease level of functioning. ME/CFS strikes people of all ages and racial, ethnic, and socioeconomic groups, and is diagnosed two to four times more often in women.

The disease is characterized by at least six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. It is sometimes preceded by flu-like symptoms followed by pain in the joints and muscles, unrefreshing sleep, tender lymph nodes, sore throat, and headache. A distinctive characteristic of the illness is post-exertion malaise, which is a worsening of symptoms following physical or mental exertion occurring within 12-48 hours of the exertion and requiring an extended recovery period. Although the cause of ME/CFS remains unknown, symptoms may be triggered by an infection.

This page last reviewed on August 4, 2022
https://www.nih.gov/mecfs/about-mecfs
 
"NIH’s next ME/CFS Telebriefing will be held on March 28, 2022 from 3:00 – 4:00 pm ET. The telebriefing will include updates from NIH on ME/CFS-related research efforts and a scientific presentation by Benjamin H. Natelson, M.D., Professor of Neurology at Icahn School of Medicine at Mount Sinai, on his NIH-funded research on ME/CFS.

We invite you to submit questions ahead of the telebriefing. Please submit them to NIHME-CFSWorkingG@ninds.nih.gov by close of business (COB) Thursday, March 17, 2022. We will also answer questions that are submitted during the telebriefing in the Zoom Q&A window. 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.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1605311243"
New:
Transcript of NIH ME/CFS Advocacy Call - March 28, 2022
Main speaker: Dr Benjamin Natelson

Others: Dr Vicky Whittemore (NIH); Dr Walter Koroshetz (NINDS); Dr Joe Breen (NIAID); Dr Avi Nath (NIH inpatient study, etc.)

https://www.nih.gov/mecfs/nih-me/cfs-advocacy-call-march-28-2022

 
Moved post
Doesn't say much interesting. It seems that any mention of connection to ME is only ever made when it's the only topic being discussed. Otherwise it's still forbidden to say anything about it, can't mention the fact that medicine has been negligent for over a century, even though it's the reason LC is so disastrous.

As long as this message remains isolated, it means very little.


Studying Long COVID Might Help Others With Post-Viral Fatigue Ailments
Similarities between long COVID and ME/CFS motivate research

https://covid19.nih.gov/news-and-st...might-help-others-post-viral-fatigue-ailments
 
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