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

The NIH has awarded a $2.5M R01 grant to Drs Liisa Selin and Anna Gil for their work on altered T cells in ME/CFS. This follows their 2019 Ramsay award from Solve ME with which they obtained pilot data.

Press release from the Massachusetts ME/CFS Association: https://www.massmecfs.org/images/pdf/Selin_MassME_Press_Release_03162021.pdf

Grant information on the NIH Project Reporter: https://reporter.nih.gov/search/-PkzeikTlEGEpI8GsfKW0A/project-details/10185392

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disorder affecting numerous organ systems and biological processes. Published data seems to suggest that ME/CFS may be preceded by infection, and the chronic manifestation of illness may represent an altered host response to infection, or an inability to resolve inflammation.

Previous studies focused on perturbation in cytokines and metabolism have also shown that CD8 T responses are decreased in ME/CFS. In preliminary studies we examined the frequency, functional and phenotypic status of CD8 T cells to determine whether they were altered in chronic ME/CFS donors as compared to healthy donors. We observed an increased CD4:CD8 ratio, altered expression of exhaustion/activation markers like CTLA4 and 2B4 on CD8 T cells, and decreased production of IFN, TNF and CD107a/b upregulation following PMA stimulation, all suggesting CD8 T cell exhaustion. This was associated with a, perhaps compensatory increased frequency of activated CD4+CD8+ T cells in the ME/CFS donors as compared to healthy controls. Notably, a subset of the CD8 and the CD4+CD8+ T cell populations were spontaneously producing atypical cytokines, subdividing ME/CFS donors into two subsets: type 1 had an increased frequency of FoxP3+helios+ Treg-like cells producing IL9 (female donors); type 2 had FoxP3+helios- cells producing IL17 (male donors). When we examined the T-cell receptor (TCR) repertoire of the CD4+CD8+ T cell population we found evidence of antigen driven clonal expansions to an unknown antigen at this time, whether it will be a viral or auto-antigen.

We hypothesize that the common theme in ME/CFS is an aberrant response to an immunological trigger like infection, which results in a permanently dysregulated immune system as a result of CD8 T cell exhaustion. These studies will identify potential biomarkers and mechanisms driving the immunopathogenesis of ME/CFS leading to future therapies. We will explore this hypothesis in the following Aims.

Aim 1 we will examine altered CD8 and CD4+CD8+ T-cell responses in ME/CFS: 1) we will determine if the level of CD8 T cell exhaustion varies with ME/CFS type 1 (female) and Type 2 (male) response and with the severity of ME/CFS symptoms using a larger ME/CFS cohort; 2) we will examine EBV antigen-specific responses in ME/CFS donors to determine if a common persistent virus response is altered by the immunosuppressive state of CD8 T cell exhaustion and further contributing to the disease state of ME/CFS; 3) microarray analyses will be done on sorted activated T cell subsets to assist in understanding the alterations in the functionality of the exhausted and activated CD8 and CD4+CD8+ T cell subsets in ME/CFS donors.

In Aim 2 we will examine TCR repertoire of CD8 and CD4+CD8+ T-cell subsets for evidence of antigen driven clonal expansion. Defining the characteristics of the activated clonally expanded CD8 and CD4+CD8+ T cells would be a major step in the field potentially leading to the identification a specific infectious or auto-antigen response that could be the main driver of CD8 T cell exhaustion and the immunological basis of ME/CFS.
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ETA: The MassME press release links to a presentation from September 2020 and a conference poster with Seliin and Gil's preliminary findings.

This post has been copled and following discussion moved to a new thread:
NIH $2.5M R01 grant to Drs Liisa Selin and Anna Gil for their work on altered T cells in ME/CFS, 2021
 
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Notice of Special Interest (NOSI): Stimulate Research on the Diagnosis, Treatment, and Mechanistic Understanding of Postural Orthostatic Tachycardia Syndrome (POTS)

Research Objectives

POTS can be a debilitating condition that affects routine activities such as working or attending school. POTS primarily affects women of child-bearing age, with most studies reporting 80-90% female predominance. The peak incidence is at age 14 years, but half of all individuals with POTS develop it in adulthood. While there are no precise data on the prevalence of POTS, it is estimated to affect 0.2-1% of the U.S. population.

There is thus a compelling need to stimulate research to understand the causes of POTS in order to inform the development of treatments. Improving the diagnosis of POTS through the development of biomarkers or improved diagnostic tools represents another major need. Translational studies and mechanistic clinical trials to guide the development of better treatments are also important goals. This NOSI signals interest in this important area with the goal of stimulating research applications to address these critical needs.

https://grants.nih.gov/grants/guide/notice-files/NOT-HL-21-008.html
 
"Dear Dr. Collins,

We are a Community Advisory Committee established with the support of the NIH to advise the ME/CFS Collaborative Research Center consortium. We are housed at the Center for Solutions for ME/CFS at Columbia University. Our committee includes people living with ME/CFS, caregivers, advocates, and representatives from Solve ME/CFS Initiative, Bateman Horne Center, and #MEAction.

We applaud the NIH’s commitment to research into Post-acute sequelae of SARS-CoV-2 infection (PASC) known as Long COVID. We also wholeheartedly support the letter sent to you by the Long COVID Alliance and join them in all their recommendations.

We believe it would be a lost opportunity to embrace the struggle of people with PASC without also embracing those with Post Viral Fatigue Syndromes and ME/CFS. It is well known that up to 80% of people who have ME/CFS develop the disease following acute infections such as SARS, Ebola and common viruses like EBV, human herpesvirus-6, enteroviruses and others – and even after parasitic and bacterial infections."

https://cfsformecfs.org/2021/04/19/a-letter-from-our-community-advisory-committee/
 
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Andy said:
Dear Dr. Collins,

We are a Community Advisory Committee established with the support of the NIH to advise the ME/CFS Collaborative Research Center consortium. We are housed at the Center for Solutions for ME/CFS at Columbia University. Our committee includes people living with ME/CFS, caregivers, advocates, and representatives from Solve ME/CFS Initiative, Bateman Horne Center, and #MEAction.

We applaud the NIH’s commitment to research into Post-acute sequelae of SARS-CoV-2 infection (PASC) known as Long COVID. We also wholeheartedly support the letter sent to you by the Long COVID Alliance and join them in all their recommendations.

We believe it would be a lost opportunity to embrace the struggle of people with PASC without also embracing those with Post Viral Fatigue Syndromes and ME/CFS. It is well known that up to 80% of people who have ME/CFS develop the disease following acute infections such as SARS, Ebola and common viruses like EBV, human herpesvirus-6, enteroviruses and others – and even after parasitic and bacterial infections.

https://cfsformecfs.org/2021/04/19/a-letter-from-our-community-advisory-committee/
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To be clear - this quote is only part of the letter.
 
Investigating long-COVID and chronic fatigue syndrome
Avindra Nath, MD, MBBS, FAAN, National Institute of Neurological Disorders and Stroke, Bethesda, MA, talks on ongoing studies investigating post-COVID-19 convalescence. The National Institute of Neurological Disorders and Stroke (NINDS) has launched a natural history study (NCT04573062) to learn more about the range and timing of symptoms that people have before, during, and after SARS-CoV-2 infection. The study will include patients with neurological manifestations to assess the pathophysiology of these complications and identify potential therapeutic targets. Another study will enroll ‘long-haul’ COVID-19 patients with symptoms that overlap with chronic fatigue syndrome (CFS). It is hoped this could identify therapeutic targets of benefit in both COVID-19 and CFS. This interview took place during the American Academy of Neurology (AAN) 2021 Annual Meeting.
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Sly Saint said:
Investigating long-COVID and chronic fatigue syndrome


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There were two other videos made from this interview. These were on Long Covid and didn't mention ME, but were interesting nevertheless.

Title: Does Covid-19 enter the brain via the nose?


Description: Literature on the neurologic complications of SARS-CoV-2 infection continues to emerge as evidence accumulates. However, many questions regarding the underlying mechanisms behind these neurological manifestations remain unanswered. Avindra Nath, MD, MBBS, FAAN, National Institute of Neurological Disorders and Stroke, Bethesda, MA, talks on aspects of COVID-19 that are not fully understood. A major question remains whether the virus, or viral products, can enter the brain via the nose. It has been postulated that SARS-CoV-2 may travel through the nose to the brainstem and move through nerve tracts to cause the commonly reported respiratory and gastrointestinal symptoms. Dr Nath also talks on the need for further investigation into immune mediators and the pathophysiology of long-haul COVID-19. This interview took place during the American Academy of Neurology (AAN) 2021 Annual Meeting.
 
Title: Pathophysiology of acute and post-viral neurologic complications of COVID-19


Description:
Avindra Nath, MD, MBBS, FAAN, National Institute of Neurological Disorders and Stroke, Bethesda, MA, discusses the acute and post-viral neurologic complications of SARS-CoV-2 infection and the latest scientific understanding of the neuropathology in COVID-19. Acute phase neurologic complications can be caused by the direct effects of the virus on the brain, or in more severe cases where patients are hospitalized with multi-organ involvement, the effects on the brain can be secondary to other organ damage. Many patients also report long-term neurological complaints following viral infection, including psychiatric manifestations, memory problems, exercise intolerance, and autonomic disturbances. Dr Nath discusses investigations into the pathophysiology of these 'long haul' patients. This interview took place during the American Academy of Neurology (AAN) 2021 Annual Meeting.
 
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The recording and transcript from the March 30th telebriefing are now available on the NIH ME/CFS website: https://www.nih.gov/mecfs/events


We received many questions during the telebriefing and were not able to answer all of them during the meeting. Responses to questions that were not answered will be posted to the website soon.


Regards,

The Trans-NIH ME/CFS Working Group
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Tom Kindlon said:
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The recording and transcript from the March 30th telebriefing are now available on the NIH ME/CFS website: https://www.nih.gov/mecfs/events


We received many questions during the telebriefing and were not able to answer all of them during the meeting. Responses to questions that were not answered will be posted to the website soon.


Regards,

The Trans-NIH ME/CFS Working Group
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Nice that they addressed the issue on death threats. Also good to see such clear dismissal of the WSJ piece.
 
Midnattsol said:
I don't understand how some people keep arguing that the psychologizing is a thing of the past, though. If it is so obvious why haven't it been made more clear to those working with patients?
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Physicians can't seem to think critically of medicine's shortcomings. I had an appointment with my GP recently, mostly a waste of time but she was more or less aware of LC and spoke differently about ME than she had before, and also insisted many times that I should find another doctor. I mentioned the danger in that, of people having their diagnosis removed and replaced with conversion disorder and its various euphemisms, insisting that it's only very old doctors who are on their way out who do that. Which would remove the only thing that has actually helped me: disability income.

It seems unimaginable that such faults could insist, even from people making those faults themselves. Doublethink is very mentally conflicting. Criticism of medicine is almost blasphemy. In general terms it's accepted, but pointing at any specific flaw always leads to denial that this specific thing may be wrong. You could go through the whole list of flaws and they would all be deemed OK. So nothing happens. You can criticize generically, but every specific thing is beyond criticism. Just like Richard Horton saying half of all published research is wrong. Not research he publishes, though. Not just not half, none of it.

Is there a word equivalent for tautology but instead of being true for being true it's wrong for being wrong? Falsiology? Whatever.
 
Moved post

Not sure what else is new, but the NIH has updated its Covid strategic plan and it includes LC, by name.

https://covid19.nih.gov/nih-strategic-response-covid-19

Here it says specifically that the expanded focus now includes LC:



Does not appear to explicitly say that this is new but zero reference to ME/CFS, that past epidemics had similar outcomes or that this is a common occurrence from infectious diseases. Still completely taboo.
 
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Power relations often dictate not only the perspective on reality and the interpretation of reality, but also what are considered to be the facts themselves. This is the basis for tragic errors, missed opportunities and grievous losses. Simply speaking, it is stupidity—stubborn, dedicated, entitled stupidity. Going along with the crowd and kissing up to superiors should not be the highest value, sometimes even the only value, as is seen in human social behavior. No animal could ever survive long this way.

Our physical well being in the hands of the doctors who play the social games of their field and confine themselves to its flawed beliefs, instead of using their education and skills to help us manage our painful interface with physical reality, let us down and do us harm. The intelligence and realism that can be found in our patient forum, however, is a surer help and guide.
 
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Apparently this website has just launched, https://recovercovid.org/

"RECOVER, an initiative from the National Institutes of Health (NIH), seeks to understand, prevent, and treat PASC, including Long COVID. PASC is a term scientists are using to study the potential consequences of a SARS-CoV-2 infection."

From the FAQ,

"It's estimated that millions of Americans suffer from post-viral syndromes other than PASC. Will RECOVER help them?

RECOVER may help us learn how people recover from viral infections in general. It may also help improve our understanding of other post-viral syndromes, such as chronic fatigue syndrome, and autoimmune diseases—conditions in which the body's immune system attacks healthy cells."
 
Neurologic and Psychiatric Effects of SARS-CoV-2 Meeting, July 14-15, 2021

"The National Institute of Mental Health (Division of AIDS Research), National Institute of Neurological Disorders and Stroke and National Institute on Aging are organizing a virtual meeting entitled “Neurologic and Psychiatric Effects of SARS-CoV-2 Infection” to be held on July 14-15, 2021. There is emerging data that in as high as 30 percent of COVID-19 patients neurologic and psychiatric symptoms are observed. COVID-19 patients experience ischemic strokes, cerebral hemorrhages, encephalitis, prolonged unconsciousness and altered mental states (psychosis, delirium). Anxiety and post-traumatic stress disorders (PTSD) symptoms are also seen in these patients. A majority of patients also develop loss of smell and taste, myalgias and fatigue or malaise."

https://neurocovidpasc.org/
 
Interestingly, this was sent out as an email to the NIH ME/CFS Information List even though it makes no mention of ME/CFS.


"NIH builds large nationwide study population of tens of thousands to support research on long-term effects of COVID-19

The National Institutes of Health awarded nearly $470 million to build a national study population of diverse research volunteers and support large-scale studies on the long-term effects of COVID-19. The NIH REsearching COVID to Enhance Recovery (RECOVER) Initiative(link is external) made the parent award to New York University (NYU) Langone Health, New York City, which will make multiple sub-awards to more than 100 researchers at more than 30 institutions and serves as the RECOVER Clinical Science Core. This major new award to NYU Langone supports new studies of COVID-19 survivors and leverages existing long-running large cohort studies with an expansion of their research focus. This combined population of research participants from new and existing cohorts, called a meta-cohort, will comprise the RECOVER Cohort. This funding was supported by the American Rescue Plan.

NIH launched the RECOVER Initiative to learn why some people have prolonged symptoms (referred to as long COVID) or develop new or returning symptoms after the acute phase of infection from SARS-CoV-2, the virus that causes COVID-19. The most common symptoms include pain, headaches, fatigue, “brain fog,” shortness of breath, anxiety, depression, fever, chronic cough, and sleep problems.

“We know some people have had their lives completely upended by the major long-term effects of COVID-19,” said NIH Director Francis S. Collins, M.D., Ph.D. “These studies will aim to determine the cause and find much needed answers to prevent this often-debilitating condition and help those who suffer move toward recovery.”"

https://www.nih.gov/news-events/new...s-support-research-long-term-effects-covid-19
 
"News from NIH: ME/CFS telebriefing- October 22, 2021 at 3:00pm ET

We request your participation in a telebriefing about updates on NIH’s efforts to advance research on ME/CFS. The telebriefing will be held on October 22, 2021, 3:00 pm until 4:00 pm ET. Our guest speaker will be Rakib Rayhan, M.D., Ph.D., Department of Neurology, Medstar Georgetown University Hospital. Dr. Rayhan was the recipient of a fellowship award from NINDS (Investigating the neural correlates of fatigue in ME/CFS). During the call, participants will be invited to submit questions using the Q&A feature. Pre-registration is not required.

Please click the link below to join the webinar:

https://nih.zoomgov.com/j/1616894211?pwd=ZUlYdld1UHBEYStzU2JiTHZFRDc1UT09

Passcode: 816676


Or One tap mobile :

US: +16692545252,,1616894211#,,,,*816676# or +16468287666,,1616894211#,,,,*816676#

Or Telephone:

Dial(for higher quality, dial a number based on your current location):

US: +1 669 254 5252 or +1 646 828 7666 or +1 669 216 1590 or +1 551 285 1373

Webinar ID: 161 689 4211

Passcode: 816676

International numbers available: https://nih.zoomgov.com/u/ac57QmdjqS



Regards,

The Trans-NIH ME/CFS Working Group"
 
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