Wilhelmina Jenkins
Senior Member (Voting Rights)
Yep - they will try to pass it as a separate bill.
-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025
- Thread starter Andy
- Start date
I've just listened to the telebriefing. I don't think there was anything particularly remarkable to report.
The ME/CFS Intramural study data has been mostly analysed and should be published soon - there were some findings, but there was nothing said about what they were. The findings may lead to therapeutic options (edit - this was said in a fairly aspirational way).
The CRCs had a meeting - there appears to be convergence in findings, especially on metabolomics and microbiome, with age and gender having an impact on findings.
The big push at the NIH is on Long Covid. This is seen as a homogeneous population, and a very important opportunity for making progress. Repeatedly the message was if something is found in the LC population then it can be looked for in the ME/CFS population. Or if medicines are found for LC, then they can be tried in ME/CFS. There is an autopsy component to the LC studies. The focus at the moment is on collecting data and bio specimens, to make them available to researchers.
Rakib Rayhan presented his work on fMRI before and after exercise. He reported a difference after exercise between ME/CFS and controls in the medial prefrontal cortex. Koroshetz noted that this area is related to the reward system... Rayhan will be publishing soon. I didn't quite get to looking at the crucial last pair of charts on the slide showing before and after effects in different parts of the brain, so, I'm not sure how significant the difference was.
It looked like Vicky Whittemore continues to do good work for people with ME/CFS, having worked to ensure that the common data elements in the Long Covid studies included symptoms of ME/CFS such as PEM.
So yeah, not really any revelations. But some publications should be coming out soon. And the LC research is crucial. I don't like thinking about where we would be without the global pandemic bringing some attention to post-viral conditions.
Last edited:
We have to take our luck and opportunities where we find them.
Here's more detail from my hastily scrawled notes during the tele briefing: (i.e. may not be completely accurate)
Koroshetz introduced the telebriefiing
Avi Nath
Intramural ME/CFS program - 17 ME/CFS patients and 21 healthy controls.
There were 3 teams of investigators: description; physiology; immunology
Most data has been fully analysed
There is now a manuscript writing group and they expect to produce [a paper/papers?] in 'a short period of time'.
They have found a number of abnormalities
The findings will point towards further studies that can be usefully done and may even point to therapeutic approaches.
ME/CFS may indeed be the same disease as LC. The same questions will be asked of the LC patients in the new Long Covid study.
Walitt is the Primary Investigator of a new Gulf War Syndrome study that has been funded in the last few days. The questions will be the same in that study too.
Joe Green
There has recently been a consortia meeting of the collaborative research centres. They have now been operating for nearly 5 years. Covid has delayed progress. The meeting also included Canadian collaborators.
The centres found there was a convergence of findings, although much of it is at the pre-publication stage. It should be published soon. Metabolomics and microbiome differences (between ME/CFS and healthy controls) were mentioned. Age and gender differences have been found. There are findings in energy metabolism pathways - and these pathways are well studied so there may be existing ways to disrupt the pathways.
There was input from the Community Advisory Committee - their feedback will be published soon. There was mention of MAP-ME/CFS and Search ME/CFS [I didn't hear what they are].
Vicky Whittemore
The trans-NIH ME/CFS working group is re-issuing the RFAs for the centres and the data coordination centre and thinking how to move the process forward. Everyone has been swamped with Long Covid issues.
There have been conversations between US and European researchers to harmonise clinical end points. There is likely to be a need for very targeted research [as a result of the Intramural study?].
There was a Biology of Fatigue Workshop - NIH researchers (including some ME/CFS researchers) with individuals from the Sleep Research Society to think about the underlying mechanisms of fatigue. Topics: animal models; neurobiology of fatigue; issues with cerebrospinal fluid flow, sleep cycles. [Not much detail was given - it was pretty much just a list of topics.]. The video cast of this workshop is available to view: https://neuroscienceblueprint.nih.gov/about/event/beyond-symptom-biology-fatigue
Koroshetz/Whittemore
A large proportion of people suffering from Long Covid have passed the 6 months time requirement and now meet ME/CFS criteria. This terrible pandemic does present a unique opportunity. Tens of thousands of people affected, with a very clear onset, and there is the opportunity to have healthy controls who had the same acute disease. And it's possible to get people early in the course of their illness.
The US funding for Long Covid research is the Recover Initiative. Koroshetz is very hopeful that there will be some findings from the Recover Initiative. As soon as there is some finding that 'can be nailed down', it will be possible to see if it applies in people with non-Covid-19 ME/CFS. [This makes me think that the findings from the ME/CFS Intramural study may not be that exciting.] Common data elements include fatigue, PEM, POTS. The study includes an autopsy programme - they will be looking for immunological and viral pathology.
It is hoped that the hundreds of researchers involved in the Recover Initiative will eventually become ME/CFS researchers.
Questions
? Can the ME/CFS CRCs receive funding from the Recover Initiative? The first phase is just to collect bio specimens and data. And hopefully there will be additional initiatives [I think implying the answer is 'no, at least not at the moment'. ]
? Will people in the LC studies be evaluated against ME/CFS criteria? There are common data elements for ME/CFS included in LC studies. The LC population is a homogeneous population which will be good for testing interventions. If the interventions work in people with Long Covid, they can then be tried in people with ME/CFS.
Vicky Whittemore noted that it is encouraging to have new researchers approaching her, interested in doing studies in this area. She commented that in illnesses like MS, the national MS Society has been around many many years pumping dollars into seed grants. Those investigators can then go on to get funds from the NIH. She noted that the Solve ME/CFS Initiative is starting to bear fruit in the same way.
(I haven't written up Rakib Rayhan's presentation as it will be easier to assess the work when there is a publication. He was awarded an (NIH?) F30 Award. He worked in Baraniuk's lab (2010-2011) and is now a Resident Physician at the Dept of Neurology at Georgetown University Hospital.)
Koroshetz introduced the telebriefiing
Avi Nath
Intramural ME/CFS program - 17 ME/CFS patients and 21 healthy controls.
There were 3 teams of investigators: description; physiology; immunology
Most data has been fully analysed
There is now a manuscript writing group and they expect to produce [a paper/papers?] in 'a short period of time'.
They have found a number of abnormalities
The findings will point towards further studies that can be usefully done and may even point to therapeutic approaches.
ME/CFS may indeed be the same disease as LC. The same questions will be asked of the LC patients in the new Long Covid study.
Walitt is the Primary Investigator of a new Gulf War Syndrome study that has been funded in the last few days. The questions will be the same in that study too.
Joe Green
There has recently been a consortia meeting of the collaborative research centres. They have now been operating for nearly 5 years. Covid has delayed progress. The meeting also included Canadian collaborators.
The centres found there was a convergence of findings, although much of it is at the pre-publication stage. It should be published soon. Metabolomics and microbiome differences (between ME/CFS and healthy controls) were mentioned. Age and gender differences have been found. There are findings in energy metabolism pathways - and these pathways are well studied so there may be existing ways to disrupt the pathways.
There was input from the Community Advisory Committee - their feedback will be published soon. There was mention of MAP-ME/CFS and Search ME/CFS [I didn't hear what they are].
Vicky Whittemore
The trans-NIH ME/CFS working group is re-issuing the RFAs for the centres and the data coordination centre and thinking how to move the process forward. Everyone has been swamped with Long Covid issues.
There have been conversations between US and European researchers to harmonise clinical end points. There is likely to be a need for very targeted research [as a result of the Intramural study?].
There was a Biology of Fatigue Workshop - NIH researchers (including some ME/CFS researchers) with individuals from the Sleep Research Society to think about the underlying mechanisms of fatigue. Topics: animal models; neurobiology of fatigue; issues with cerebrospinal fluid flow, sleep cycles. [Not much detail was given - it was pretty much just a list of topics.]. The video cast of this workshop is available to view: https://neuroscienceblueprint.nih.gov/about/event/beyond-symptom-biology-fatigue
Koroshetz/Whittemore
A large proportion of people suffering from Long Covid have passed the 6 months time requirement and now meet ME/CFS criteria. This terrible pandemic does present a unique opportunity. Tens of thousands of people affected, with a very clear onset, and there is the opportunity to have healthy controls who had the same acute disease. And it's possible to get people early in the course of their illness.
The US funding for Long Covid research is the Recover Initiative. Koroshetz is very hopeful that there will be some findings from the Recover Initiative. As soon as there is some finding that 'can be nailed down', it will be possible to see if it applies in people with non-Covid-19 ME/CFS. [This makes me think that the findings from the ME/CFS Intramural study may not be that exciting.] Common data elements include fatigue, PEM, POTS. The study includes an autopsy programme - they will be looking for immunological and viral pathology.
It is hoped that the hundreds of researchers involved in the Recover Initiative will eventually become ME/CFS researchers.
Questions
? Can the ME/CFS CRCs receive funding from the Recover Initiative? The first phase is just to collect bio specimens and data. And hopefully there will be additional initiatives [I think implying the answer is 'no, at least not at the moment'. ]
? Will people in the LC studies be evaluated against ME/CFS criteria? There are common data elements for ME/CFS included in LC studies. The LC population is a homogeneous population which will be good for testing interventions. If the interventions work in people with Long Covid, they can then be tried in people with ME/CFS.
Vicky Whittemore noted that it is encouraging to have new researchers approaching her, interested in doing studies in this area. She commented that in illnesses like MS, the national MS Society has been around many many years pumping dollars into seed grants. Those investigators can then go on to get funds from the NIH. She noted that the Solve ME/CFS Initiative is starting to bear fruit in the same way.
(I haven't written up Rakib Rayhan's presentation as it will be easier to assess the work when there is a publication. He was awarded an (NIH?) F30 Award. He worked in Baraniuk's lab (2010-2011) and is now a Resident Physician at the Dept of Neurology at Georgetown University Hospital.)
Last edited:
Ah, yeah… always at the bottom of the priority lists.
Wilhelmina Jenkins
Senior Member (Voting Rights)
I felt a bit frustrated that they don’t recognize that there have been millions of dollars of patient funded research studies for the past 30 years. There were quite a few wealthy people with this disease who were regular donors back in the ‘90s and afterwards. Quite a few of the researchers went on to receive NIH funding.
MS changed when it could be easily detected on MRIs. We haven’t had our breakthrough moment yet, but it certainly hasn’t been for lack of effort on the patient community’s part.
I was glad to hear of so many publications in the pipeline. I was glad that they verified that the CRCs would be refunded. But if all of those researchers that Dr Whittemore talked about are going to jump into researching ME/CFS, they need to be helped along by some good set aside funding to show them that NIH is ready to take this disease seriously.
MS changed when it could be easily detected on MRIs. We haven’t had our breakthrough moment yet, but it certainly hasn’t been for lack of effort on the patient community’s part.
I was glad to hear of so many publications in the pipeline. I was glad that they verified that the CRCs would be refunded. But if all of those researchers that Dr Whittemore talked about are going to jump into researching ME/CFS, they need to be helped along by some good set aside funding to show them that NIH is ready to take this disease seriously.
Dolphin
Senior Member (Voting Rights)
Link doesn’t work for some reason. This should:
https://neuroscienceblueprint.nih.gov/about/event/beyond-symptom-biology-fatigue
Paddler
Established Member
I am glad to hear that results/analysis of the intramural study at NIH are finally forthcoming. It has been over 5 years since my second trip to the clinical center at Bethesda.
I am curious to see if the NIH fMRI component of their study replicated Dr Rayhan’s findings. Several webinar participants asked how a viral insult could lead to these neurologic abnormalities and whether neuro inflammation may be playing a role. It will be nice to know what the CSF analysis shows. Also, if metabolism is adversely affected how does this affect highly metabolically active neural tissue / function.
I heard additional genetic testing and analysis also ongoing.
I am somewhat optimistic that long covid researchers will become MECFS researchers with the passage of time by default.
I am curious to see if the NIH fMRI component of their study replicated Dr Rayhan’s findings. Several webinar participants asked how a viral insult could lead to these neurologic abnormalities and whether neuro inflammation may be playing a role. It will be nice to know what the CSF analysis shows. Also, if metabolism is adversely affected how does this affect highly metabolically active neural tissue / function.
I heard additional genetic testing and analysis also ongoing.
I am somewhat optimistic that long covid researchers will become MECFS researchers with the passage of time by default.
rvallee
Senior Member (Voting Rights)
I would trust the process more if it wasn't for blatant BS like this:
The NIH is literally funding Jason's mono study. And of course there are several other pathogens already studied known to cause the same issues, on top of course of some bacteria like Lyme but that gets people into near 'roid rage. It's impossible to destroy credibility more than blatantly lying about basic things.
One thing that is clear is that the NIH is explicitly refusing to follow the clearest piece of evidence, for whatever reason, likely having to do with decades of insisting this is impossible: that this is not new, we have seen this before and it is massive. This should be unacceptable but here they are failing again, the same way they failed before, justified by having failed before. There are even other smaller epidemics raising concerns, like Florida experiencing Dengue outbreaks causing chronic illness. They are refusing to look at the pieces on the board.
Medical research seems to be the only field of science where explicitly refusing to follow the evidence is praised as good. No wonder progress is so rare.
The NIH is literally funding Jason's mono study. And of course there are several other pathogens already studied known to cause the same issues, on top of course of some bacteria like Lyme but that gets people into near 'roid rage. It's impossible to destroy credibility more than blatantly lying about basic things.
One thing that is clear is that the NIH is explicitly refusing to follow the clearest piece of evidence, for whatever reason, likely having to do with decades of insisting this is impossible: that this is not new, we have seen this before and it is massive. This should be unacceptable but here they are failing again, the same way they failed before, justified by having failed before. There are even other smaller epidemics raising concerns, like Florida experiencing Dengue outbreaks causing chronic illness. They are refusing to look at the pieces on the board.
Medical research seems to be the only field of science where explicitly refusing to follow the evidence is praised as good. No wonder progress is so rare.
Great point. Yes, the Dubbo study, looking at a population based sample of people who got EBV/glandular fever, Ross river fever and Q fever is getting pretty old now. That's three diseases that demonstrably could have been studied in the way the NIH is talking about for Covid-19/Long Covid.
And there has been at least one study since looking at post-Q-fever impacts using people who recovered from Q-fever who either did or did not develop the ME/CFS equivalent Q-fever syndrome. There is Ebola, which reportedly produces a post-infection syndrome, although I can't recall any really good research of a substantial scale on that at all. It's not that hard to find a group of people who have had one of quite a number of acute illnesses and who then either did or did not develop ME/CFS symptoms after it.
Sure, the covid-19 epidemic is an opportunity, but it's only unique in that it makes the problem so very hard to ignore.
rvallee
Senior Member (Voting Rights)
Some news and discussion about new funding, some claims, seemingly not quite accurate. A large grant was awarded to University of Alabama, where Jarred Younger works. Does not appear to be involved. In fact either the NIH is deliberately avoiding ME researchers, or their claims for many years that they prioritize researchers with experience in a field were somehow on the complete BS side. Shocking.
Last edited by a moderator:
Kalliope
Senior Member (Voting Rights)
NIH Long-term study of children with COVID-19 begins
quotes:
A large, long-term study of the impacts of COVID-19 on children has enrolled its first participant at the National Institutes of Health’s Clinical Center in Bethesda, Maryland. The study, which is supported by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, will track up to 1,000 children and young adults who previously tested positive for COVID-19 and evaluate the impact of COVID-19 on their physical and mental health over three years. The study is expected to yield a detailed picture of COVID-19’s effects on the overall health of children, their development and immune responses to infection, and their overall quality of life in the years following infection. This work is part of NIH’s Researching COVID to Enhance Recovery (RECOVER) Initiative(link is external), to better understand the long-term consequences of SARS-CoV-2 infection.
...
“Although we know that children are vulnerable to COVID-19, we still do not have a clear picture of how COVID-19 affects them in the long term,” said NIAID Director Anthony S. Fauci, M.D. “In adult patients, the long-term sequelae of COVID, including post-acute COVID-19, can significantly affect quality of life. Our investigations into the pediatric population will deepen our understanding of the public health impact that the pandemic has had and will continue to have in the months and years to come.”
quotes:
A large, long-term study of the impacts of COVID-19 on children has enrolled its first participant at the National Institutes of Health’s Clinical Center in Bethesda, Maryland. The study, which is supported by the National Institute of Allergy and Infectious Diseases (NIAID), part of the National Institutes of Health, will track up to 1,000 children and young adults who previously tested positive for COVID-19 and evaluate the impact of COVID-19 on their physical and mental health over three years. The study is expected to yield a detailed picture of COVID-19’s effects on the overall health of children, their development and immune responses to infection, and their overall quality of life in the years following infection. This work is part of NIH’s Researching COVID to Enhance Recovery (RECOVER) Initiative(link is external), to better understand the long-term consequences of SARS-CoV-2 infection.
...
“Although we know that children are vulnerable to COVID-19, we still do not have a clear picture of how COVID-19 affects them in the long term,” said NIAID Director Anthony S. Fauci, M.D. “In adult patients, the long-term sequelae of COVID, including post-acute COVID-19, can significantly affect quality of life. Our investigations into the pediatric population will deepen our understanding of the public health impact that the pandemic has had and will continue to have in the months and years to come.”
From BPS attempts at psychologizing Long Covid @Art Vandelay
I agree that quote is a bit worrying, and doesn't really fit well with Avi Nath saying that they found immunological abnormalities in the small sample of ME/CFS patients looked at in the intramural study. Dr Michael Sneller is not some junior scientist at NIAID. He is Principal Investigator on a Post-Covid trial with 900 participants that started in 2020 and will run until 2027. He was a Principal Investigator on a 5 year post-Ebola study.
That summary of a report from the post-Ebola study appears to be downplaying the idea of post-infectious syndromes:
Art Vandelay said:
I agree that quote is a bit worrying, and doesn't really fit well with Avi Nath saying that they found immunological abnormalities in the small sample of ME/CFS patients looked at in the intramural study. Dr Michael Sneller is not some junior scientist at NIAID. He is Principal Investigator on a Post-Covid trial with 900 participants that started in 2020 and will run until 2027. He was a Principal Investigator on a 5 year post-Ebola study.
That summary of a report from the post-Ebola study appears to be downplaying the idea of post-infectious syndromes:
They report that uveitis is common in the survivors, but also common in people in the region who didn't get Ebola.Ebola report said:
Ebola report said:
Mij
Senior Member (Voting Rights)
Moved post
Autoimmune and Immune-Mediated Diseases
Overview
The Accelerating Medicines Partnership® (AMP®) program is a public-private partnership between the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), and multiple nonprofit and industry organizations. Managed through the Foundation for the NIH (FNIH), the AMP program aims to improve our understanding of therapeutically relevant biological pathways and validate information that could be relevant for the development of multiple therapeutics.
Launched in December 2021, the AMP Autoimmune and Immune-Mediated Diseases (AMP AIM) program seeks to deepen our understanding of the cellular and molecular interactions that lead to inflammation and autoimmune diseases. AMP AIM investigators will focus on rheumatoid arthritis, systemic lupus erythematosus (lupus), psoriasis, psoriatic arthritis, and Sjögren’s disease. The knowledge gained through these studies will advance the development of new and enhanced therapies for autoimmune diseases. In addition, AMP AIM will drive the development of new research tools, data storage platforms, and data sharing technologies.
https://www.nih.gov/research-traini...rship-amp/autoimmune-immune-mediated-diseases
Autoimmune and Immune-Mediated Diseases
Overview
The Accelerating Medicines Partnership® (AMP®) program is a public-private partnership between the National Institutes of Health (NIH), the U.S. Food and Drug Administration (FDA), and multiple nonprofit and industry organizations. Managed through the Foundation for the NIH (FNIH), the AMP program aims to improve our understanding of therapeutically relevant biological pathways and validate information that could be relevant for the development of multiple therapeutics.
Launched in December 2021, the AMP Autoimmune and Immune-Mediated Diseases (AMP AIM) program seeks to deepen our understanding of the cellular and molecular interactions that lead to inflammation and autoimmune diseases. AMP AIM investigators will focus on rheumatoid arthritis, systemic lupus erythematosus (lupus), psoriasis, psoriatic arthritis, and Sjögren’s disease. The knowledge gained through these studies will advance the development of new and enhanced therapies for autoimmune diseases. In addition, AMP AIM will drive the development of new research tools, data storage platforms, and data sharing technologies.
https://www.nih.gov/research-traini...rship-amp/autoimmune-immune-mediated-diseases
Last edited by a moderator:
Andy
Retired committee member
From an NIH MECFS Information List email:
The NIH announces a new webinar series highlighting research taking place at the NIH ME/CFS Collaborative Research Centers (CRC) and the Data Management Coordinating Center (DMCC). Presentations are prerecorded and include a Q&A panel discussion with the Network Community Advisory Committee. New webinars will post each month to the MECFSnet website.
NIH Program Directors Vicky Whittemore, Ph.D., and Joseph Breen, Ph.D., kick off the webinar series with an introduction to the ME/CFS Research Network. To learn more, please watch the video.
The NIH announces a new webinar series highlighting research taking place at the NIH ME/CFS Collaborative Research Centers (CRC) and the Data Management Coordinating Center (DMCC). Presentations are prerecorded and include a Q&A panel discussion with the Network Community Advisory Committee. New webinars will post each month to the MECFSnet website.
NIH Program Directors Vicky Whittemore, Ph.D., and Joseph Breen, Ph.D., kick off the webinar series with an introduction to the ME/CFS Research Network. To learn more, please watch the video.
Andy
Retired committee member
From an NIH MECFS Information List email:
The first video in the NIH MECFS webinar series is the Data Management and Coordinating Center at RTI. Drs. Linda Brown and Matthew Schu describe the work that RTI has been doing to support research efforts at the ME/CFS Collaborative Research Centers. Watch the video here:
The first video in the NIH MECFS webinar series is the Data Management and Coordinating Center at RTI. Drs. Linda Brown and Matthew Schu describe the work that RTI has been doing to support research efforts at the ME/CFS Collaborative Research Centers. Watch the video here:
Code:
https://www.youtube.com/watch?v=--VtVMjnz_0Kalliope
Senior Member (Voting Rights)
MECFSnet Webinar - Columbia University, Center for Solutions for MECFS
Description:
In this webinar, Dr. Ian Lipkin and colleagues at the NIH-funded Collaborative Research Center at Columbia University provide an update on their research progress.
Tweet from Center for Solutions for ME/CFS:
Next in our @NIH #MECFS Collaborative Research Network Webinar series is Ian Lipkin and the research team @Columbia_CII [URL='https://twitter.com/ColumbiaMSPH']@ColumbiaMSPH [/URL]discussing the latest finding from the work at the Center for Solutions for MECFS.
Description:
In this webinar, Dr. Ian Lipkin and colleagues at the NIH-funded Collaborative Research Center at Columbia University provide an update on their research progress.
Tweet from Center for Solutions for ME/CFS:
Next in our @NIH #MECFS Collaborative Research Network Webinar series is Ian Lipkin and the research team @Columbia_CII [URL='https://twitter.com/ColumbiaMSPH']@ColumbiaMSPH [/URL]discussing the latest finding from the work at the Center for Solutions for MECFS.
Andy
Retired committee member
The NIH have announced what looks to be the next round of funding for their Collaborative Research Centers.
"New funding opportunities now available:
RFA-22-019 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54, Basic Experimental Studies Involving Humans Allowed)
https://grants.nih.gov/grants/guide/rfa-files/RFA-NS-22-019.html
RFA-22-020 Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) (U24 Basic Experimental Studies with Humans Required)
http://grants.nih.gov/grants/guide/rfa-files/RFA-NS-22-020.html"
"New funding opportunities now available:
RFA-22-019 Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRCs) (U54, Basic Experimental Studies Involving Humans Allowed)
https://grants.nih.gov/grants/guide/rfa-files/RFA-NS-22-019.html
RFA-22-020 Data Management and Coordinating Center (DMCC) for the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Collaborative Research Centers (CRC) (U24 Basic Experimental Studies with Humans Required)
http://grants.nih.gov/grants/guide/rfa-files/RFA-NS-22-020.html"