USA: News from Solve ME

[Dolphin]

Two upcoming webinars by Solve ME:

2) Probing Functional Autoantibodies in Patients with ME/CFS

Thursday, July 31
12 PM Pacific / 3 PM Eastern

Webinar Registration
(link can display time for your time zone)

Description:

Last week, we hosted @VirusesImmunity to discuss her Catalyst Award-winning study, “Probing Functional Autoantibodies in Patients with #MECFS."

She shared how her work lays the groundwork for targeted treatment & advancing diagnostic tools. Watch here:

 

[Dolphin]

(Only for people in the US I believe)
From Solve ME:

The unhide® + Solve Together Unified Platform is here! The Unified Platform is a digital health platform built by patients for patients.

By participating, you can:

- Track your symptoms
- Connect your smartwatch
- View your health patterns over time
- Download symptom reports to share with providers
- Virtually connect to research studies

Be part of the solution – Join the Unified platform today.

www.unhidenow.org

Brain Inflammation Collaborative

 

[ahimsa]

Results From the RECOVER-Adult Study: How Social Challenges Affect Risk of Developing Long Covid

It is known that people’s demographics and health factors affect their risk of getting Long COVID. For example, the risk of Long COVID is greater for women than for men, and greater for people with cardiovascular disease or diabetes than for people without.

But how social factors affect the risk for Long COVID was not well understood. Social factors are the conditions in which people live: their access to education; access to health care; economic means; level of community support; and neighborhood disadvantage (e.g., neighborhood deprivation or crowdedness). Studying almost 4,000 adults participating in the RECOVER-Adult cohort, the researchers here asked how social factors affect Long COVID risk.

They found all assessed social factors significantly affected the risk of developing Long COVID. People who skipped medical care because they could not afford it were almost three times as likely to develop Long COVID as people who did not. People with either financial or food hardships were more than twice as likely to develop Long COVID as people without these hardships.

People who experienced medical discrimination or who lost insurance during the pandemic were more than twice as likely to develop Long COVID as people who did not. And people with poor social support were almost twice as likely to develop Long COVID as people with such support.

 

[ahimsa]

NIH RECOVER Study Analyzes Electronic Health Records to Estimate Long Covid Incidence

Dr. Lorna Thorpe, a professor of population health at the New York University School of Medicine, and Dr. Richard Moggitt, a professor of biomedical informatics at the Emory University School of Medicine, recently led a study to measure the incidence of Long Covid among adults and children by using electronic health records.

Their research team found that for every 20 adults with COVID, between 2 and 5 developed Long Covid. And for every 25 children with COVID, 1 developed Long Covid. The incidence of Long Covid was higher for women than for men; for people hospitalized for COVID than for people who were not; and for people with more pre-existing conditions. Incidence was also higher for adults older than 65 years (than for younger adults); and for children aged 12 though 17 years (than for younger children). Long Covid incidence spiked in the months after each surge of a new SARS-CoV-2 variant. And Long Covid incidences for recent (Omicron) variants were higher than those for earlier ones.

Estimating the Long Covid incidence is challenging because symptoms of Long Covid often overlap with symptoms of other diseases. Indeed, estimates by earlier studies have varied from 6% to over 50%. Given this ambiguity, the research team also calculated a “minimum incidence” of Long Covid by measuring the “excess incidence” of Long Covid symptoms. To do this, the team first measured the incidence of symptoms among people who could not have had Long Covid. (In other words, some other diseases must have caused these symptoms in these people.) For example, in early 2019 some people’s symptoms resembled those of Long Covid, even though Long Covid could not have caused these symptoms (since the pandemic had just begun).
...

I'm a bit confused by line that talks about "early 2019" and then says "since the pandemic had just begun." Do they mean early 2020? Or did they mean 2019 and meant to say that the pandemic had not yet begun?

One more quote:

Overall, these results are important because they show that despite new treatments and vaccines and greater immunity among the population over these last few years, Long Covid incidence has not gone down. Thus, Long Covid is still an important public health matter needing serious attention and resources.

 

[ahimsa]

Be part of the solution – Join the Unified platform today.

www.unhidenow.org

Brain Inflammation Collaborative

There's more information here:
Solve M.E. and The Brain Inflammation Collaborative Launch the Unified Platform to Advance Research Across 30+ Chronic Conditions

They've also announced a webinar scheduled for October 14:

On October 14, 2025, Solve will host Brain Inflammation Collaborative (BIC) co-founder and CEO Christy Jagdfeld, Principal Investigator and lived experience expert Megan L. Fitzgerald, PhD, and platform architect and caregiver to a person with ME/CFS Chris Nowak (CareEvolution) for the webinar, “The Unified Platform: Advancing Research Across ME/CFS, Long Covid, and Other Chronic Conditions.”

Register for the webinar here:
https://us02web.zoom.us/webinar/register/WN_ATe5-nbxSsy89D8TcXIInw

 

[ahimsa]

Solve ME article on research led by Dr. Maureen Hansen:

Extracellular Vesicle Proteins in Men with ME/CFS: Changes Before and After Exercise Correlate with Key Symptoms

Dr. Maureen Hanson, a professor of molecular biology and genetics at Cornell University and member of Solve’s Research Advisory Council, specializes in understanding the molecular nature of ME/CFS. ME/CFS has affected Dr. Hanson’s own family, and she is an important ME/CFS researcher and strong patient advocate. Recently, Dr. Hanson’s team published a study in Clinical and Translational Medicine comparing how ME/CFS and exercise relate to extracellular vesicles in men.
...

The team found levels of many extracellular vesicle proteins from healthy men differed from those from men with ME/CFS. Even before exercise, some of these differences suggested that men with ME/CFS have problems with blood clotting; immune functions (especially with neutrophils, important for early immunological defenses, and with complement proteins, important for targeting infectious agents); making and breaking down proteins; metabolism; and oxidative stress. The differences in complement proteins got worse soon after exercise, possibly exacerbating post-exertional malaise. Other differences appearing soon after exercise suggested that the men with ME/CFS were improperly recovering from exercise regarding how their mitochondria processed energy and how they regulated coagulation (blood clotting).

Severity of post-exertional malaise (PEM) correlated with differences in extracellular vesicle proteins related to the endoplasmic reticulum stress response and to protein folding. In other words, the men in whom levels of these extracellular vesicle proteins changed the most also had the most severe post-exertional malaise. And severity of unrefreshing sleep correlated with differences in extracellular vesicle proteins related to cell signaling, metabolism, and protein folding. These results suggested that men with ME/CFS may experience symptoms of post-exertional malaise and unrefreshing sleep after exercise because of problems with endoplasmic reticulum stress response, with protein folding, and with using energy to recover from physical stress.

Why This Study Matters to the Patient Community:

• Suggests processes whose dysregulation may contribute to ME/CFS symptoms after exercise: Finds changed levels of proteins involved in endoplasmic reticulum responses, metabolism, and protein folding to correlate with symptom severity.
• Lays the Groundwork for Targeted Treatments: Suggests drugs targeting these processes and other processes (like complement) may reduce post-exertional malaise and unrefreshing sleep for some patients.
• Advances Diagnostic Tools: Shows extracellular vesicle proteins are useful and convenient biomarkers for some exercise-related symptoms of ME/CFS.
• Relevant for key symptoms of ME/CFS: Focuses on two hallmark symptoms of ME/CFS—post-exertional malaise and unrefreshing sleep.

Forum thread for this study is here:

https://www.s4me.info/threads/ev-pr...ercise-in-males-with-me-cfs-2025-glass.44472/

 

[Dolphin]

Keeping ME/CFS in the Fight on Capitol Hill - Solve ME/CFS Initiative

The Solve ME/CFS Initiative (Solve M.E.) is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.

solvecfs.org

Keeping ME/CFS in the Fight on Capitol Hill​

• September 11, 2025
• 10:59 pm

Hi friends,

It’s Monique here, Advocacy Director at Solve M.E., with a progress update on the budget process.

We’re right in the thick of appropriations season — when Congress decides how federal dollars will be spent next year. This is always an important moment for our community, but this year it’s especially complex.

Here’s where things stand:

The House version of the Labor, Health, and Human Services appropriations bill is deeply disappointing – and almost unrecognizably different from the Senate version.

• Funding in the House version is reallocated so differently from the Senate version that there is almost no way to compare them. It also focuses only on the POTS and Dysautonomia symptoms of ME/CFS, with no mention of post-exertional malaise or any of the broader systemic issues facing our community.
  • (Note: We believe this may be due to a clerical error, as some of the language appears to be copy-pasted from another identical section – we are following up with subcommittee staff on this).

The Senate version is better. Their language:

• Calls on CDC to launch a national epidemiological study of post-infectious syndromes, including ME/CFS, and to investigate causes, diagnosis, and risk factors.
• Urges CDC to engage with patients and physicians, update clinical guidance, and expand its Project ECHO provider education program into more states, with a focus on rural and underserved areas.
• Directs NIH to implement the new ME/CFS Research Roadmap — including biomarkers, diagnostic tools, and clinical trials — and requires a progress plan back to Congress within 180 days.
• Pushes NIH and ARPA–H to integrate ME/CFS into Long COVID treatment and research trials, especially around symptoms like fatigue, brain fog, post-exertional malaise (PEM), and POTS.
• Bonus in the Department of Defense bill – it keeps ME/CFS eligible for research under the Defense Department’s Peer-Reviewed Medical Research Program (PRMRP) at the Congressionally Directed Medical Research Program (CDMRP).

What comes next: Reconciliation

The House and Senate will have to reconcile their very different bills — deciding which pieces of each bill make it into the final version of the budget. Given the vast disparities between the two, this process is likely to take time. The current deadline is September 30th, but the White House Administration has already requested an extension (continuing resolution) through January 2026 to avoid a shutdown.

In other words, this process is far from over, and your voice matters right now.


We need to fight for the Senate version of the ME/CFS language to be what ends up in the final reconciled bill.

Here are two ways you can help today:

• Stand with the Senate: We’ll be sending thank-you letters urging them to hold strong and keep ME/CFS language in the final bill. Send emails to your Senators here.
• Push the House to do better: For our House Representatives, we will be sending them emails asking them to become an ME/CFS champion by supporting the inclusion of the Senate ME/CFS language in the final reconciliation bill. Reach out to your House reps here.

I know these updates can feel technical and focused on tiny details. But underneath all the acronyms and bureaucratic processes is something very real: our collective effort to make sure people with ME/CFS, Long COVID, and related conditions are no longer invisible in federal policy.

It may not be easy, and it may not be fast, but step by step, we are moving the needle. And we’re doing it together.

With gratitude and determination,

Monique Wike
Advocacy Director, Solve M.E.

 

[Hutan]

Good to see this advocacy, I hope it bears fruit. Thank you Monique and the rest of the team at Solve M.E.

 

[ahimsa]

Research news from Solve ME:

Replenishing Body Fluids with Intravenous Saline Can Reduce Dysautonomia in People with ME/CFS

Dysautonomia affects the nervous system’s automatic functions, like regulating blood pressure or heart rate. Serious and debilitating symptoms of dysautonomia are common among people with ME/CFS. These symptoms can be driven by significant loss of body fluids or by poorly circulating fluids (e.g., blood pooling in legs, too little blood returning to the heart). Saline solution delivered intravenously can boost body fluids and quickly relieve symptoms of dysautonomia, as seen for people with orthostatic intolerance or POTS (two conditions common among people with ME/CFS).

In this study, the team tested whether three doses of intravenous saline, given over nine weeks, helped 22 people with either ME/CFS and dysautonomia or ME/CFS and low body fluid levels. They found that the treatments significantly reduced symptoms, especially symptoms of dysautonomia and POTS; significantly increased ability to work; and significantly improved overall quality of life. Treatments most benefited people who were the most dehydrated at the start, suggesting that the treatment worked by replenishing fluids.

However, intravenous saline treatments did not help all participants. And while many patients “felt” better after each treatment, they still performed poorly on tilt table tests and still had POTS at the end of the nine-week course. This is consistent with earlier reports of intravenous saline therapy only temporarily relieving orthostatic intolerance–related symptoms and POTS. In a follow-up questionnaire completed a week after the last dose, 8 of the 19 participants wanted to keep getting infusions, but 10 were unsure.

The authors noted that more work is needed to understand whether intravenous saline therapy can more durably reduce symptoms for people with ME/CFS and dysautonomia. Continual intravenous treatment is impractical because it needs a central venous catheter (a port), which can cause serious complications. (In contrast, the intermittent treatments in this study caused no serious adverse effects.) Other possibilities for intravenous saline treatment to more durably reduce symptoms include combining these treatments with other types of targeted treatments; tailoring saline schedules, solutions, and volumes for each patient; and targeting the faulty mechanisms driving fluid loss, instead of just intermittently replenishing the lost fluid. For example, Dr. Sjögren’s team recently found that many people with ME/CFS have unusual levels of vasopressin, a hormone that controls how much water is lost through urine. Thus, treatments that regulate vasopressin levels may be a better long-term solution for people with dysautonomia and ME/CFS than treatments to replenish fluids. Future clinical trials could address these important questions.

 

[Hutan]

Research news from Solve ME:

Replenishing Body Fluids with Intravenous Saline Can Reduce Dysautonomia in People with ME/CFS

The trial is discussed here.
Some posts about the study have been moved there.

 

[Hutan]

Solve's initiative to summarise research studies is good, but they need to dial up the skepticism a bit I think. If you click through to the thread we have discussing the saline IV study, it's clear that there are significant issues with it (e.g. 45% drop out, subjective outcomes, outcomes assessed over too short a time frame, improvements are relatively small).

They found that the treatments significantly reduced symptoms, especially symptoms of dysautonomia and POTS; significantly increased ability to work; and significantly improved overall quality of life. Treatments most benefited people who were the most dehydrated at the start, suggesting that the treatment worked by replenishing fluids.

I don't think it can reasonably be said that the researchers found that the treatments significantly reduced symptoms. It found that people who didn't drop out e.g. due to worsening tended to report improvements in the short-term of a magnitude consistent with a placebo. That's quite a different thing.

A member on our discussion thread noted that the treatments did not 'significantly increase ability to work', the improvement was not statistically significant (I haven't checked that).