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Dakota15 said:
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#NotJustFatigue: "Big win in the Senate! After more than a year of advocating for federal research funding, Congress has officially recognized the ME/CFS Research Roadmap—and is now directing NIH to create a detailed implementation plan. This is a major step forward in the fight for treatments, diagnostics, and answers. The Senate language comes straight from our advocacy and @MEActNet, and shows that your voice is being heard. The House is expected to release its own version in the coming months before the two chambers reconcile later this year. We’ll be fighting to keep this language intact."

"The Senate report also calls for expanded research through the RECOVER Initiative and ARPA-H, specifically naming ME/CFS as a priority."

Here is the FY26 Appropriations Senate LHHS report, if you search Long COVID or ME/CFS in it.
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Source: U.S. Senate / Twitter/X / Not Just Fatigue
Date: August 1, 2025
URL:

Ref: Convert from jpg to txt,
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Big win in the Senate!

After more than a year of advocating for federal research funding,
Congress has officially recognized the ME/CFS Research Roadmap — and is
now directing NIH to create a detailed implementation plan. This is a
major step forward in the fight for treatments, diagnostics, and
answers. The Senate language comes straight from our advocacy and
MEActNet, and shows that your voice is being heard.

The Senate report also calls for expanded research through the RECOVER
Initiative and ARPA-H, specifically naming ME/CFS as a priority.

The House is expected to release its own version in the coming months
before the two chambers reconcile later this year. We'll be fighting to
keep this language intact.

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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS] Research
Roadmap.

The Committee recognizes the urgent need to advance research for ME/CFS,
especially given its overlap with Long COVID and relevance across
multiple ICs and commends NIH for approving the ME/CFS Research Roadmap.
The Committee encourages NIH to implement the oadmap's recommendations,
including advancing biomarker discovery, diagnostic tool development,
and clinical trials. NIH is further directed to provide a detailed
implementation plan to the Committee within 180 days of enactment.

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Long COVID Research.

ARPA-H is urged to invest in Long COVID research to ensure its
high-risk, high-reward research is focused on drug trials, development
of biomarkers, and research that includes Long COVID associated
conditions, such as dysautonomia, postural orthostatic tachycardia
syndrome [POTS], and myalgic encephalomyelitis/chronic fatigue syndrome
[ME/CFS]. The Committee urges ARPA-H to coordinate with NIH on these
efforts to augment NIH's Long COVID research portfolio. ARPA-H is also
urged to prioritize the support of R&D programs and projects that can
enable clinical trials evaluating therapies which target key symptoms
and symptom complexes associated with Long COVID including widespread
pain, fatigue, non-restorative sleep, brain fog, dizziness,
post-exertional malaise [PEM], POTS and loss of taste and smell.

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Long COVID Treatments.

The Committee remains concerned about the economic and overall health
impact that Long COVID inflicts on the Nation. It is currently estimated
that between 6 percent and 19 percent of those infected with SARS—CoV-2
go on to develop Long COVID, resulting in up to 20 million Americans
suffering from this set of debilitating chronic symptoms. Long COVID is
characterized by a wide range of symptoms including severe fatigue, non
restorative sleep, cognitive dysfunction, and widespread pain. Further,
it resembles other post-acute infection syndromes [PAISs], such as
fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome
[ME/CFS] and related conditions, known as chronic overlapping pain
conditions [COPCs] or nociplastic syndromes. While the Committee is
pleased that NIH’s HEAL and RECOVER initiatives plan to target some
specific symptoms of Long COVID, the Committee is concerned that NIH has
not expanded the evaluation of treatments to address many common
symptoms associated with Long COVID either individually or that present
as syndromes which are combinations of symptoms. Furthermore, NIH's
research program has defined Long COVID narrowly, excluding many of the
common symptoms plaguing Long COVID sufferers. In June 2024, NASEM
released the 2024 NASEM Long COVID Definition, which encompasses
extensive lists of the symptoms and diagnosable conditions that current
science attributes to Long COVID. The Committee urges NIH to rebalance
its research program to prioritize clinical trials in pursuit of
effective treat-

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ments and to use the NASEM Long COVID definition to guide its choice of
symptoms and conditions to be address by the candidate treatments. Such
trials should target key symptoms and symptom complexes associated with
Long COVID including widespread pain, fatigue, non-restorative sleep,
brain fog, dizziness, post-exertional malaise [PEM], postural
orthostatic tachycardia syndrome [POTS] and loss of taste and smell.
Further, the Committee urges NIH to prioritize the support of clinical
trials evaluating therapies for Long COVID including therapies that have
demonstrated efficacy in treating COPCs or nociplastic syndromes that
overlap with Long COVID.
 
Sharing some local updates with the Long COVID Program at Minnesota Department of Health (MDH).

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'Do You or Someone You Know Want to Help Shape MN’s Response to Post-Viral Chronic Conditions such as Long COVID and ME/CFS?'

Hearing from those directly affected is essential. Over the coming months, there will be opportunities to participate in MDH focus groups, design work sessions, and surveys.'

'The Minnesota Department of Health (MDH) is inviting people with lived experience of long COVID or other post-viral chronic conditions, such as ME/CFS and POTS, to participate in the Minnesota long COVID statewide planning activities. Over the next several months there will be opportunities to provide your insights and experiences. Your input will help shape planning and recommendations to address long COVID and related conditions.’

Sign up & form is here.
 
Yann04 said:
this is too much for me to parse through. Has it passed the senate, or just the committee?
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This report is just from the Senate Appropriations Committee. Funding still has to be passed by full senate and house.

#MEAction posted a news item on their website which is a little easier to read:

https://www.meaction.net/2025/08/01/celebrating-a-big-senate-win/

Jaime Seltzer posted a more detalied account on LinkedIn:

https://www.linkedin.com/posts/jaim...et-increase-activity-7357071058492944384-VACl
 
North Carolina Public Radio (WUNC): 'When Long Covid Rewrites Your Love Story'

'Today, we’ll talk about how an illness that’s affected tens of millions of Americans upended the life of one couple and forced them to confront big, existential questions — like could their marriage withstand this new reality?'

"Philip Hoover is one of 18 million American adults who've been diagnosed with long COVID'

"..energy crashes meant that Philip had to put a lot of his life on pause."

'And I realized that I had such severe brain fog that I couldn't actually understand any of the TV shows that we would watch'

'I would typically go to get answers, but it was pretty quickly apparent that really is just sort of like the Wild West for long COVID patients. Like no one really knew anything and it was disturbing to realize that, oh, we're actually having to educate our own doctors about this.'

"One of the things I think it's, it's important to explain is, so about 50% of people who have long COVID actually have what's called myalgic encephalomyelitis or chronic fatigue syndrome. So ME/CFS s is the acronym for that, and it's an energy limiting disease. It's a neuroimmune disease. Its symptoms range from anything from insomnia to muscle pain, but the worst symptom is post exertional malaise. That basically means that your symptoms can get worse with exertion, and we're not talking about like running a marathon or anything like that. Like some people can have a crash just from like sitting up. In bed."

' Around 400 million people globally have been diagnosed with some form of long COVID'

50-minute audio interview segment here.
 
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HealthCentral: 'This Epidemiologist Also Has Long COVID'

'After battling lingering symptoms that many dismissed as anxiety, Harvard researcher Beth Stelson, PhD joined a patient-led research & advocacy group that helped legitimize LC as a chronic health condition'

'For Beth Stelson, Ph.D., a social epidemiologist and researcher at Harvard T.H. Chan School of Public Health in Boston, MA, LC’s unrelenting symptoms left her physically, and occasionally professionally, unmoored.'

'If we can come together, my hope is that we can reprioritize some of this research that affects all members of our community.'
 
Public Books: 'Will “Care” Save Us?'

By Emily Lim Rogers

"It revealed the devastating free fall caused by a vacuum of care. Consequently, anyone writing about bodies, care, disability, and medicine over the last four years seemed compelled to answer the question: “What about COVID? For that matter, what about long COVID?”

While the CDC has acknowledged its existence for four decades, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) reached new prominence in the aftermath of COVID-19. The virus is causing syndromic postviral illness at massive scale, with many cases of long COVID diagnosed as ME/CFS."
 
'New biomarker may be the first specific and quantifiable indicator for confirming long COVID'

'Researchers from the Translational Genomics Research Institute (TGen), part of City of Hope, and the Lundquist Institute for Biomedical Innovation at Harbor-UCLA Medical Center have identified a potential biomarker for long COVID.'

The study results, reported in the journal Infection, detail the detection of SARS-CoV-2 protein fragments within extracellular vesicles (EVs) - tiny, naturally occurring packages that help cells share proteins, metabolites, and other materials. The researchers collected and analyzed blood samples from 14 patients over 12 weeks of aerobic exercise training (56 samples in all) in a clinical trial led by Stringer in long COVID.

The researchers found 65 distinct protein fragments from SARS-CoV-2 inside the EVs. These fragments come from the virus's Pp1ab protein, an RNA Replicase enzyme which is key to how the virus copies itself and makes other viral particles. This protein is found uniquely in SARS-CoV-2, and not in uninfected human cells, noted Asghar Abbasi, Ph.D., a Lundquist Institute investigator and first author of the study.
 
Dakota15 said:
'New biomarker may be the first specific and quantifiable indicator for confirming long COVID'

'Researchers from the Translational Genomics Research Institute (TGen), part of City of Hope, and the Lundquist Institute for Biomedical Innovation at Harbor-UCLA Medical Center have identified a potential biomarker for long COVID.'

The study results, reported in the journal Infection, detail the detection of SARS-CoV-2 protein fragments within extracellular vesicles (EVs) - tiny, naturally occurring packages that help cells share proteins, metabolites, and other materials. The researchers collected and analyzed blood samples from 14 patients over 12 weeks of aerobic exercise training (56 samples in all) in a clinical trial led by Stringer in long COVID.

The researchers found 65 distinct protein fragments from SARS-CoV-2 inside the EVs. These fragments come from the virus's Pp1ab protein, an RNA Replicase enzyme which is key to how the virus copies itself and makes other viral particles. This protein is found uniquely in SARS-CoV-2, and not in uninfected human cells, noted Asghar Abbasi, Ph.D., a Lundquist Institute investigator and first author of the study.
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I feel like this paragraph definitely puts the dampener on things:
"We haven't run [our tests] on people without long COVID symptoms who are currently, or who were, infected with COVID," said Stringer. "This raises the question: is this just continuing to take out the trash from the COVID infected cell or is this really ongoing replication someplace? I think that's the mechanistic issue that needs to be resolved in future studies."
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Lots of people who have had covid have some kind of persistent markers of infection in their blood and no long covid samples. So it stands to reason these post exercise markers could be a similar phenomenon.

Also they gave pwLC 12 weeks of aerobics training? I guess they haven't heard of PEM..
 
Is there a thread on this study? Didn't see yet

Scienmag (Science Magazine): 'Scientists Discover Crucial Biomarkers for Chronic Fatigue Syndrome'

'In a groundbreaking advancement poised to reshape the understanding and diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers at Cornell University have pioneered a novel approach leveraging circulating cell-free RNA (cfRNA) signatures detectable in blood plasma. This cutting-edge technique utilizes machine-learning algorithms to decode the complex molecular signals that dying cells release into the bloodstream, offering unprecedented insight into the elusive pathophysiology of this debilitating, often misunderstood chronic illness.'

'The research, recently published on August 11, 2025, in the prestigious Proceedings of the National Academy of Sciences, details how plasma samples from ME/CFS patients and sedentary healthy controls were analyzed to isolate and sequence extracellular RNA fragments. These fragments serve as proxies for gene expression profiles from diverse tissues impacted by the disease. Utilizing advanced machine-learning classifiers, the team identified over 700 transcripts significantly divergent between ME/CFS cases and controls, facilitating a molecular signature indicative of the syndrome.'

'The project was conceived through a collaboration between the De Vlaminck Lab, under associate professor Iwijn De Vlaminck, renowned for pioneering cell-free nucleic acid technologies, and Dr. Maureen Hanson’s team, leaders in ME/CFS pathophysiology research. De Vlaminck’s laboratory previously demonstrated the diagnostic power of cfRNA in identifying Kawasaki disease and multisystem inflammatory syndrome in children (MIS-C), signaling the versatility of this approach in inflammatory and immune-mediated conditions.'

'Beyond diagnostics, the technology offers a potent research instrument to dissect the multifaceted biology of ME/CFS and related chronic illnesses such as long COVID. Notably, while long COVID has recently amplified awareness of post-infectious chronic syndromes, ME/CFS remains more prevalent and, in many cases, more severely disabling. The Cornell team’s innovation could therefore serve as a reference model for studying infection-associated chronic diseases with overlapping symptomatology but distinct molecular fingerprints.'
 
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