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

Snowdrop said:
Collins clearly needs to be replaced if anything positive is to happen at NIH for people with ME.

Biden has chosen to continue with his tenure unfortunately. This is just an opinion based on little more than a hunch but I don't think that there will be a sea change at NIH to how ME is viewed despite this pandemic. The prejudice against ME is deeply rooted and systemic.

We may yet benefit but it would be collaterally. And there is the concern that there could be further political instability that would result in an even more regressive attitude to people with long term chronic unwellness.

Or it could all turn out much rosier but I think it would have been better to have chosen to oust Collins.
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Collins was brought on as NIH Director after serving as NHGRI Director for many years, and he was chosen I believe primarily because they wanted someone with expertise to spearhead the burgeoning field of genomics research and technology at NIH, which was crucial at that time and the years that followed.

He’s done that fairly successfully and I agree there are now other pressing needs and expertise that are needed at the helm at NIH. Genomics has taken off long ago and is so pervasive in life sciences research that it doesn’t need as much leadership guidance at NIH than it did over a decade ago.
 
Personally, my impression is that Francis Collins has shown more interest in ME/CFS than his predecessors and is likely to be better for us on average than a random person who might get the job.

I think NIH funding is heavily related to how many applications they get. Not many applications have been coming in for ME/CFS which I think to a considerable extent is due to a relative lack of money that has been raised privately, though that has certainly improved in recent years.
 
leokitten said:
Collins was brought on as NIH Director after serving as NHGRI Director for many years, and he was chosen I believe primarily because they wanted someone with expertise to spearhead the burgeoning field of genomics research and technology at NIH, which was crucial at that time and the years that followed.

He’s done that fairly successfully and I agree there are now other pressing needs and expertise that are needed at the helm at NIH. Genomics has taken off long ago and is so pervasive in life sciences research that it doesn’t need as much leadership guidance at NIH than it did over a decade ago.
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A much better explanation of his tenure than I gave. And yes science is moving fast in this area.

I have a tendency toward over brevity. And it starts wading into the political which is always difficult to tease out where to leave off. I find the problems in this arena are that politics can be problematic for simply being political. I'd like to see here and everywhere else appoint people who are champions of robust science within a framework that has the moral imperative of respect for all people and the planet.

And just for fun it would be really amazing for the US if they could hire somebody under the age of 50 or at least retirement.

Now I've said too much.
 
Dolphin said:
Personally, my impression is that Francis Collins has shown more interest in ME/CFS than his predecessors and is likely to be better for us on average than a random person who might get the job.

I think NIH funding is heavily related to how many applications they get. Not many applications have been coming in for ME/CFS which I think to a considerable extent is due to a relative lack of money that has been raised privately, though that has certainly improved in recent years.
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My problem with this is that FC is part of a system that is broken when it comes to ME. And yes, agree entirely that hiring some random person in his place does not make anything better for us. I was simply but not explicitly saying that it would be great to have someone in that position now who meets certain hand-picked by me qualifications that would be beneficial to us. Not exactly something I'd hold my breath over. I was expressing my frustration really and wishing rather lamely for something better.

I don't disagree that things could still happen at NIH just that I don't expect a lot.

I hope I am proved wrong. As with everyone else I have a lot riding on the outcomes.
 
Full text from an email.

Two new research tools developed by RTI International, the Data Management and Coordinating Center for the NIH-funded ME/CFS Collaborative Research Centers (CRCs) Network, are now available to help advance ME/CFS research by allowing researchers to access and share data and biospecimens.

mapMECFS is an online data sharing platform that allows researchers to discover, share, and access data from multi-omic studies. The platform was initially developed to support the ME/CFS Network CRCs that employ a variety of research methods (e.g., microbiome screens, RNA sequencing, mitochondrial assays, metabolomic assays) to identify potential biomarkers and study the underlying cause(s) of ME/CFS. mapMECFS allows researchers to search the contents of data sets across multiple studies, quickly compare results for specific molecules or markers of interest, and download relevant data to be used for exploration or validation studies. Additionally, mapMECFS encourages and facilitates sharing of new data by capturing key study metadata to make results easier to find.

searchMECFS is an online, interactive search tool that allows researchers to query and request available biospecimens (e.g., DNA, RNA, urine, plasma, and peripheral blood mononuclear cells) based on specific demographic and clinical characteristics. The initial cohort, the Chronic Fatigue Initiative, was a research study supported by the Hutchins Family Foundation. Biospecimens and associated data were collected from 201 individuals with ME/CFS and 200 matched controls. The biospecimens are housed at BioSEND, NINDS’ biomarker repository at Indiana University, and the data are hosted by RTI International. Investigators may also request access to just the clinical data for analysis. Additional cohorts’ biospecimens and datasets will be available in the future. Researchers who access biospecimens through searchMECFS will be able to upload the completed assay results into mapMECFS to make the information widely available to other investigators.

The development of these tools was supported by U24-NS105535 to RTI International.


Regards,

The Trans-NIH ME/CFS Working Group

ETA: Same text also available on the NIH site at https://www.nih.gov/mecfs/announcem...e-cfs-related-data-biospecimens-now-available
 
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Merged thread
NIH has recently launched two online digital resources to facilitate research in myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS). The tool that allows researchers to access data from several multi-omic studies on ME/CFS is called mapMECFS, and searchMECFS will provide researchers access to biospecimens and de-identified clinical information on patients.

No one knows what causes ME/CFS. The debilitating disease often starts with a cold or flu-like symptoms leading some to speculate a microbial cause. But the symptoms persist along with muscle aches and an inability to think clearly. Even simple physical movements become overwhelming. The severity of the disease varies. In the worst cases, patients become bedridden and are unable to feed themselves.
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https://www.genengnews.com/news/nih...tforms-for-chronic-fatigue-syndrome-research/
 
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Technically more Long Covid but at least they are quite explicit about the link so this is also news about ME.


Working together to understand long-term effects of COVID-19

https://schorline.ninds.nih.gov/2021/02/05/long-term-covid-19/

During their initial COVID-19 illness, many patients have headache and muscle aches along with the loss of taste or smell. Patients who are more severely ill with COVID-19 can have confusion, seizures, or bleeding in the brain/strokes. The recovery for those who become critically ill is likely to take months or years. However, some who had milder disease and test negative for the virus also have a longer-term recovery process. These patients often have symptoms, like extreme fatigue, post-exertional malaise, (i.e., feeling very tired and sick after small degrees of mental or physical exertion), chronic musculoskeletal pain, sleep disorders, difficulty concentrating and remembering, fast heart rate and dizziness after assuming upright posture suggestive of postural orthstatic tachycardia syndrome (POTS), that overlap with other chronic illnesses, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). For more on these efforts, please read NINDS Director Walter Koroshetz’s latest Director’s Message.

The natural history of the post-acute COVID syndrome (PACS) is not yet clear. COVID-19 affects almost all organ systems and we need to understand the biologic basis of the recovery process, the causes of persistent disability and how best to improve the health of those who are not better after clearing the virus. This is important because what we learn through research about PACS may help understand, treat, and prevent ME/CFS and potentially other diseases too.

...

Finally, studies are being done to identify the mechanisms responsible for this persistent illness and its relationship to prior COVID-19 infection. For example, Dr. Avindra Nath, NINDS’ clinical director, will be studying PACS patients using a protocol similar to that used in the comprehensive NINDS ME/CFS study.
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First usage I have seen of PACS. Is that official somewhere?
 
Linked in the article above is a message from the director of NINDS dated today.


New resources for large-scale ME/CFS research

https://www.ninds.nih.gov/News-Even...ages/New-resources-large-scale-MECFS-research

Although many people fully recover from the novel coronavirus, there is a subset of individuals who continue to experience severe and life-changing symptoms on a long-term basis, a condition that has been referred to as “Long COVID syndrome.” The knowledge gained through research on Long COVID syndrome may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases. For more, please read NINDS Deputy Director Dr. Nina Schor’s post on The Schor Line.

...

Active NINDS efforts are underway to seek a better understanding of ME/CFS in order to treat—and ultimately prevent—this disease. Across biomedical research, innovative tools and methods are being developed to help investigators mine and analyze clinical data and biospecimens, looking for patterns and potential answers to important questions about the underlying causes of diseases. To facilitate these efforts, just earlier this week, the National Advisory Neurological Disorders and Stroke (NANDS) Council approved two concepts to continue support for ME/CFS collaborative research centers and a data management coordinating center. Moreover, I am glad to announce two new research tools, mapMECFS and searchMECFS, designed to advance ME/CFS research. These tools invite investigators to access and share data and biospecimens collected from people with ME/CFS who have volunteered to participate in clinical research. Both were developed with NINDS funding (U24-NS-105535) to RTI International, the Data Management and Coordinating Center for the NIH-funded ME/CFS Collaborative Research Centers (CRCs) Network.​
 
NINDS - NIH said:
The natural history of the post-acute COVID syndrome (PACS) is not yet clear.
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rvallee said:
First usage I have seen of PACS. Is that official somewhere?
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I've seen "post-acute COVID" (or "post-acute COVID-19") in several other places (and I think I heard it in some video?) but I can't remember where.

I do think this may be the first time I've seen the "syndrome" on the end and the PACS acronym.
 



NIH: Director's Messages - New resources for large-scale ME/CFS research

Active NINDS efforts are underway to seek a better understanding of ME/CFS in order to treat—and ultimately prevent—this disease. Across biomedical research, innovative tools and methods are being developed to help investigators mine and analyze clinical data and biospecimens, looking for patterns and potential answers to important questions about the underlying causes of diseases. To facilitate these efforts, just earlier this week, the National Advisory Neurological Disorders and Stroke (NANDS) Council approved two concepts to continue support for ME/CFS collaborative research centers and a data management coordinating center. Moreover, I am glad to announce two new research tools, mapMECFS and searchMECFS, designed to advance ME/CFS research.

ETA: @rvallee had already shared this link. Sorry about this repetition..Sometimes I don't see what's right in front of me..:facepalm:
 
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ahimsa said:
I've seen "post-acute COVID" (or "post-acute COVID-19") in several other places (and I think I heard it in some video?) but I can't remember where.

I do think this may be the first time I've seen the "syndrome" on the end and the PACS acronym.
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Actually seems that the memos haven't quite been read by everyone because I saw PACS and PASC used from different NIH sources. Yikes for communication clarity.

Either it's Post-Acute Covid Syndrome or Post-Acute Sequelae from Covid. Hey, it's not as if naming things weakly is a known problem in medicine or anything like that.
 
Copied from the long Covid thread.
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This NIH blog is really promising:
https://schorline.ninds.nih.gov/2021/02/05/long-term-covid-19/#more-1654

NINDS is leading and funding studies of this so-called PACS both at the National Institutes of Health and around the US and world:
  • NIH was recently appropriated 1.15 billion dollars to execute research that will lead to a better understanding of the heterogeneity in the recovery process after COVID and to develop treatments for those suffering from PACS.
  • Patient registries, some of which specifically enroll children or pregnant and lactating women, are being created and mined to search for and characterize neurologic dysfunction among individuals who have or have had COVID-19.
  • Biologic therapeutics, many of which modulate the body’s immune response to viruses, small molecule drugs, and implantable and external devices are being examined and tested for effectiveness in preventing or treating PACS.
  • Finally, studies are being done to identify the mechanisms responsible for this persistent illness and its relationship to prior COVID-19 infection. For example, Dr. Avindra Nath, NINDS’ clinical director, will be studying PACS patients using a protocol similar to that used in the comprehensive NINDS ME/CFS study.
Through these studies, we hope to identify new targets for therapies and preventive measures and to soon welcome a future in which no one must live with ME/CFS or PACS.
 
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Copied from the long Covid thread.
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New resources for large-scale ME/CFS research

https://www.ninds.nih.gov/News-Even...ages/New-resources-large-scale-MECFS-research

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and severe disease that, according to the CDC, affects up to 2.5 million Americans, many of whom have not been diagnosed. This debilitating disease causes pain, cognitive difficulties, severe fatigue that does not improve with rest, and an increase in symptoms following physical or mental exertion (called post-exertional malaise). The disease can have widespread effects throughout the body including in the immune, metabolic, cardiovascular, gastrointestinal, and nervous systems. Moreover, for the past several months similar symptoms have been reported in people who were infected with COVID-19. Although many people fully recover from the novel coronavirus, there is a subset of individuals who continue to experience severe and life-changing symptoms on a long-term basis, a condition that has been referred to as “Long COVID syndrome.” The knowledge gained through research on Long COVID syndrome may also positively impact the understanding, treatment, and prevention of ME/CFS and other chronic diseases.
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NIH launches new initiative to study "Long Covid"

In December, Congress provided $1.15 billion in funding over four years for NIH to support research into the prolonged health consequences of SARS-CoV-2 infection. A diverse team of experts from across the agency has worked diligently over the past few weeks to identify the most pressing research questions and the areas of greatest opportunity to address this emerging public health priority. Today we issued the first in a series of Research Opportunity Announcements (ROAs) for the newly formed NIH PASC Initiative. Through this initiative, we aim to learn more about how SARS-CoV-2 may lead to such widespread and lasting symptoms, and to develop ways to treat or prevent these conditions. We believe that the insight we gain from this research will also enhance our knowledge of the basic biology of how humans recover from infection, and improve our understanding of other chronic post-viral syndromes and autoimmune diseases, as well as other diseases with similar symptoms.

Some of the initial underlying questions that this initiative hopes to answer are:

  • What does the spectrum of recovery from SARS-CoV-2 infection look like across the population?
  • How many people continue to have symptoms of COVID-19, or even develop new symptoms, after acute SARS-CoV-2 infection?
  • What is the underlying biological cause of these prolonged symptoms?
  • What makes some people vulnerable to this but not others?
  • Does SARS-CoV-2 infection trigger changes in the body that increase the risk of other conditions, such as chronic heart or brain disorders?
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More here: Possibility of ME or PVFS after COVID-19, Long Covid
 
Walitt has had a key role in recent NIH research into ME/CFS. His published views about fibromyalgia, and the NIH inviting Edward Shorter, an ardent supporter of 'CFS is a psychosomatic illness' to brief them about the illness when a major ME/CFS study was beginning made many of use feel concerned about possible bias.
The NIH study needs patients (from Brian Vastag)
The Beginning of the End for Fibromyalgia Patients

A recent paper by Walitt, discussed here:
A clinical primer for the expected and potential post-COVID-19 syndromes, Wallit et al, 2021
does not allay fears that Long Covid (or at least the subset of it most like CFS) will be assumed to be psychosomatic.
 
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