USA: News from Solve ME

Register today for our April 29 (3 pm PT / 6 pm ET) webinar: Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID.

Join us for a webinar on exciting new research on the immune system in ME/CFS and Long COVID. Two research labs are working together to study how immune cells behave differently in people with these illnesses.

Their goals include:

✅ Learning more about how the immune system is affected
✅ Identifying different patient subgroups
✅ Finding new ways to diagnose and treat these conditions

The Selin Lab will share findings from their study on how certain immune cells (CD8 T-cells) may be linked to ME/CFS and Long COVID symptoms—and how a nebulized antioxidant/anti-pathogen treatment was used in a case study.

Panelists include Liisa K. Selin, MD, PhD, & Anna Gil, PhD (viral immunologists from the Univ. of Massachusetts Chan Medical School), and Roshan Kumar, PhD (clinical stage global biotech company HiFiBiO Therapeutics), as well as the labs' patient representatives, Megan L. Fitzgerald, PhD, and Rivka Solomon, MS.

Join us to learn more about these discoveries!

Sign up here:
https://ow.ly/1Tih50VumPR
 
Tonight 11pm UK from what the translation tells me, it's 3pm PT/6pm ET

Happening today!
https://ow.ly/1Tih50VumPR

There's still time to sign up for our webinar today @ 3 pm PT / 6 pm ET:
"Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID."
Join us for a webinar on exciting new research on the immune system in ME/CFS and Long COVID. Two research labs are working together to study how immune cells behave differently in people with these illnesses.
Their goals include:
� Learning more about how the immune system is affected
� Identifying different patient subgroups
� Finding new ways to diagnose and treat these conditions
 
bobbler said:
Tonight 11pm UK from what the translation tells me, it's 3pm PT/6pm ET

Happening today!
https://ow.ly/1Tih50VumPR

There's still time to sign up for our webinar today @ 3 pm PT / 6 pm ET:
"Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID."
Join us for a webinar on exciting new research on the immune system in ME/CFS and Long COVID. Two research labs are working together to study how immune cells behave differently in people with these illnesses.
Their goals include:
� Learning more about how the immune system is affected
� Identifying different patient subgroups
� Finding new ways to diagnose and treat these conditions
Click to expand...
Station: SolveME / YouTube
Date: May 1, 2025
URL:

Item: Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS & Long COVID

https://twitter.com/user/status/1917705729143706033
Click to expand...
 
News for Solve M.E. Advocacy Week 2025

A reminder that Advocacy Week 2025 is is scheduled for June 23 - 27. This year all activites are 100% virtual. You can participate from home which makes it easier to engage with your representatives and advocate for change.

If you're not able to particpate in Advocacy Week you can ask friends, family members, or anyone else who might be interested to sign up (see registration link at the end of post). No experience is necessary.

A short summary of Advocacy Week:
Solve ME said:
Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS and associated conditions; scientists; clinicians, and caregivers to share their unique stories with Congress. Our ultimate goal is to make these conditions widely understood, diagnosable, and treatable.

There will be actions for every energy level and ability to join, from social media posts to virtual meetings with congressional leaders. We will have levels of messaging tailored to beginning, intermediate, and experienced advocates.
Click to expand...

Solve ME has just announced the dates and times for three online training sessions. Choose the session that suits your level of experience.
Solve ME said:
There will be three 1-hour training sessions. This year we will have three different levels of messaging.
  • 9 am PT / 12 pm ET on May 28, 2025: Training for beginners and first-time advocates.
  • 9 am PT / 12 pm ET on June 4, 2025: Training for intermediate-level advocates (e.g. who have participated in a previous Advocacy Week or have done some other advocacy before but do not wish to lead a team).
  • 9 am PT / 12 pm ET on June 11, 2025: Training for team leads and advanced advocates.
Training sessions will include information on:
  • How to tell your story
  • What to expect in your meetings
  • What we are advocating for
  • How to use the Advocacy Associates App
Click to expand...

General registration for Advocacy Week (deadline May 12)

Registration for training sessions (you can select the session you want at this link)
 
Last edited:
ahimsa said:
News for Solve M.E. Advocacy Week 2025

A reminder that Advocacy Week 2025 is is scheduled for June 23 - 27. This year all activites are 100% virtual. You can participate from home which makes it easier to engage with your representatives and advocate for change.

If you're not able to particpate in Advocacy Week you can ask friends, family members, or anyone else who might be interested to sign up (see registration link at the end of post). No experience is necessary.

...

General registration for Advocacy Week (deadline May 12)

Registration for training sessions (you can select the session you want at this link)
Click to expand...

The deadline for signing up for Advocacy Week has been extended to May 27. Anyone in the USA is encouraged to volunteer.

I signed up myself - I'm a first timer!

I've also signed up for the June 4th training session. I wanted to go to the May 28th training session (for new folks) but I had a conflict.
 
Solve ME Webinar:

Probing Functional Autoantibodies in Patients with ME/CFS

Thursday, July 31
12 pm Pacific / 3 pm Eastern

Dr. Akiko Iwasaki (Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology at Yale University) is the first recipient of Solve’s ME/CFS Catalyst Award in support of her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”

In this webinar, Dr. Iwasaki will talk to Solve CEO Emily Taylor about the study, which focuses on a crucial and emerging area of investigation: the role of autoantibodies—antibodies that mistakenly target a person’s own tissues—in the long-term neurological symptoms seen in patients with ME/CFS.

Dr. Iwasaki’s lab will investigate whether these autoantibodies can actually cause symptoms such as fatigue, pain, cognitive issues, and motor dysfunction by introducing patient-derived antibodies into mice and analyzing their effects. The team will also use an advanced technology (called HuProt) to scan all human proteins to find which ones are targeted by specific autoantibodies. Autoantibodies against specific human proteins may be effective biomarkers—measurable features that help us diagnose patients quicker or customize how we treat each patient.
Click to expand...

After her presentation and as time allows, Dr. Iwasaki will take questions from the audience.

Webinar registration
 
Three training videos for Advocacy Week 2025 (beginner, intermediate and advanced) have been posted on YouTube.

These videos are meant for people who have registered with Solve ME for this year's advocacy week, but I thought the videos might be useful for others who are planning to call (or write to) their government representatives about various ME/CFS issues.

For example, some of the storytelling tips could be helpful for anyone even if the policy examples in the videos are all specific to the USA.

Solve M.E. Advocacy Week 2025: Beginner Training

Solve M.E. Advocacy Week 2025: Intermediate Training

Solve M.E. Advocacy Week 2025: Advanced Training

There's also a document with this year's talking points:

Advocacy Week 2025 Talking Points
 
Register now for Solve ME's EmPOWER M.E. roundtable, scheduled for Friday, June 27.

From a recent email (Read full email here)
Solve ME said:
One of the cornerstones of our annual Advocacy Week program is the EmPOWER M.E. roundtable. Panels of patient advocates, professionals, and scientists share their expertise on topics relevant to the quality of life for people with ME/CFS and Long Covid and their caregivers.

EmPOWER M.E. is dedicated to empowering patients and caregivers in medical and advocacy environments, giving our community tools to share our stories with impact.

Driven by patient input, EmPOWER M.E. projects strive to ensure that no family ever has to learn “the hard way” on their journey with ME/CFS, Long Covid, or other post-infection diseases.

This year the EmPOWER M.E. topic is “Pacing: Power In Slowing Down.”

The program will include a main information session, followed by two community forums with experts and patient leaders.

Panelists include:
  • Todd E. Davenport, PT, DPT, PhD, MPH
  • Dr. Lisa Hamilton, OTD, OTR/L
  • Hollis Mickey, MA, MFA
  • Clayton Powers, DPT
Click to expand...

Registration link
 
�Big news! Simmaron Research is the winner of our latest Solve #MECFS Catalyst Award! We’re proud to provide funding for their clinical trial “Low Dose Rapamycin in ME/CFS, Long-COVID, and Other Infection Associated Chronic Conditions (NCT06257420).” Congratulations to Dr. C. Gunnar Gottschalk, Dr. Avik Roy, and the whole Simmaron team!

The study hypothesizes that mTOR inhibition through rapamycin may address observed findings of autophagy impairment and symptoms in a subset of patients with ME/CFS and other infection-associated chronic conditions and illnesses (IACCIs).
The Solve ME/CFS Catalyst Awards accelerate critical research into ME/CFS, Long Covid, and related conditions—helping breakthrough projects reach the finish line faster.
Solve CEO Emily Taylor noted, “We’re excited to fund this innovative study exploring rapamycin as a potential treatment for ME/CFS and related conditions. By focusing on autophagy and using real-world biomarkers, this research brings science closer to solutions—at no cost to patients and with powerful collaborations behind it. It’s a meaningful step toward care people urgently need.”

� Learn more: https://ow.ly/HaCV50WavR9

#MECFS #BiomedicalResearch
 
Solve Announces Funding for Ramsay Grant Awardees Dr. Jo Cambridge and Dr. Dana Yelin

Solve has awarded research funds to Dr. Jo Cambridge and Dr. Dana Yelin, both previous Ramsay Research Grant winners who are finding new ways to treat people with Long Covid and ME/CFS.

Dr. Cambridge is studying how ME/CFS affects metabolism in B cells as they progress from immature cells into mature ones, while Dr. Yelin is studying how much enhanced external counterpulsation reduces fatigue and improves the quality of life for people with Long Covid.

solvecfs.org

Solve Announces More Funding for Ramsay Awardees Dr. Geraldine Cambridge and Dr. Dana Yelin - Solve ME/CFS Initiative

The Solve ME/CFS Initiative (Solve M.E.) is proud to award research funds to Dr. Geraldine Cambridge and Dr. Dana Yelin, two world-class scientists who are finding new ways to treat people with Long Covid and ME/CFS.
solvecfs.org solvecfs.org
 
Two upcoming webinars by Solve ME:

1) The ADDRESS-LC Trial: Studying the Impact of Bezisterim on Brain fog and Fatigue in People with Long Covid

Tuesday, July 22
3 PM Pacific / 6 PM Eastern

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

Description:
In this webinar, we’ll be joined by panelists Michael Peluso, MD (Assistant Professor of Medicine, University of California, San Francisco) Ezra Spier (Creator, Long Covid Studies), Penelope Markham, PhD (Senior Vice President, BioVie) who will discuss the latest updates on Long COVID research and the ADDRESS-LC trial. The ADDRESS-LC trial was designed to assess the potential impact of bezisterim on cognitive impairment/brain fog and fatigue in individuals with Long COVID and is currently recruiting people 18-64 diagnosed with Long Covid. Attendees will learn more about the requirements for participation and how to join the trial.

In this discussion led by Solve M.E. President and CEO Emily Taylor, the panelists will also share how the lived experience of patients has informed the development and conduct of the trial and the importance of patient-researcher collaboration.
Click to expand...

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:
Dr. Akiko Iwasaki (Sterling Professor of Immunobiology and Molecular, Cellular and Developmental Biology at Yale University) is the first recipient of Solve’s ME/CFS Catalyst Award in support of her study, “Probing Functional Autoantibodies in Patients with ME/CFS.”

In this webinar, Dr. Iwasaki will talk to Solve CEO Emily Taylor about the study, which focuses on a crucial and emerging area of investigation: the role of autoantibodies—antibodies that mistakenly target a person’s own tissues—in the long-term neurological symptoms seen in patients with ME/CFS.

Dr. Iwasaki’s lab will investigate whether these autoantibodies can actually cause symptoms such as fatigue, pain, cognitive issues, and motor dysfunction by introducing patient-derived antibodies into mice and analyzing their effects. The team will also use an advanced technology (called HuProt) to scan all human proteins to find which ones are targeted by specific autoantibodies. Autoantibodies against specific human proteins may be effective biomarkers—measurable features that help us diagnose patients quicker or customize how we treat each patient.
Click to expand...
 
Last edited:
wigglethemouse said:
Solve Announces Funding for Ramsay Grant Awardees Dr. Jo Cambridge and Dr. Dana Yelin

Solve has awarded research funds to Dr. Jo Cambridge and Dr. Dana Yelin, both previous Ramsay Research Grant winners who are finding new ways to treat people with Long Covid and ME/CFS.

Dr. Cambridge is studying how ME/CFS affects metabolism in B cells as they progress from immature cells into mature ones, while Dr. Yelin is studying how much enhanced external counterpulsation reduces fatigue and improves the quality of life for people with Long Covid.

solvecfs.org

Solve Announces More Funding for Ramsay Awardees Dr. Geraldine Cambridge and Dr. Dana Yelin - Solve ME/CFS Initiative

The Solve ME/CFS Initiative (Solve M.E.) is proud to award research funds to Dr. Geraldine Cambridge and Dr. Dana Yelin, two world-class scientists who are finding new ways to treat people with Long Covid and ME/CFS.
solvecfs.org solvecfs.org
Click to expand...

'This work matters to patients because it suggests that treatments that help immature B cells use energy efficiently and survive immunological attacks may help people with ME/CFS.'

What treatments do this? Fluge and Mella and Schibenbogen are pursuing B Cell depleting drugs, which don't sound like the same thing.
 
New video from Solve ME, from their EmPower M.E. event on June 27:

Pacing: Power In Slowing Down (EmPOWER M.E. 2025)
YouTube summary said:
One of the cornerstones of our annual Advocacy Week program is the EmPOWER M.E. roundtable. Panels of patient advocates, professionals, and scientists share their expertise on topics relevant to the quality of life for people with ME/CFS and Long Covid and their caregivers.

EmPOWER M.E. is dedicated to empowering patients and caregivers in medical and advocacy environments, giving our community tools to share our stories with impact.

Driven by patient input, EmPOWER M.E. projects strive to ensure that no family ever has to learn “the hard way” on their journey with ME/CFS, Long Covid, or other post-infection diseases.

This year the EmPOWER M.E. topic is “Pacing: Power In Slowing Down.”Pacing is one of the most talked-about — but often misunderstood — tools in chronic illness management. In this informative session, we’ll break down what pacing really means, why it works, and how it works — so no family has to learn the hard way.

Panelists include:
Todd E. Davenport, PT, DPT, PhD, MPH
Dr. Lisa Hamilton, OTD, OTR/L
Hollis Mickey, MA, MFA
Clayton Powers, DPT
Emily Taylor, Solve M.E.President & CEO

Hosted by Monique Wike (Solve M.E.)
Click to expand...

Edit: Links to previous EmPOWER M.E. videos

Each of the videos addresses a different topic.
 
An overview of this year's Advocacy Week. There were a total of 187 meetings with congressional offices, with 226 attendees from across 36 states and D.C.

Advocacy Week 2025: Power, Progress, and Patient-Led Change
From June 23–27, over 200 fierce, compassionate advocates came together from all across the country to make sure one thing was clear: ME/CFS, Long Covid, and related conditions will not be ignored.

In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices. This coordinated, cross-country effort was a bold reminder to our elected leaders in the lead up to the budget votes that we’re here, we’re organized, and we demand action.

What We Did Together:
  • 187 total meetings with congressional offices
  • 226 attendees from across 36 states and D.C.
  • Met with 67 Senate and 120 House offices (116 Democratic, 69 Republican, 2 Independent)
This Is Strategy, Not Just Stamina

This year’s Advocacy Week was intentionally focused. We prioritized key bipartisan members of Congress involved in the federal budget process—at a time when essential ME/CFS and Long COVID programs and funding are on the chopping block. We trained new advocates, empowered seasoned leaders, and adjusted in real-time to fast-moving developments in D.C.
Click to expand...

Additional resources:

Congressional Briefing: Urgent Action for ME/CFS (2 page PDF)

Advocacy Week 2025 Social Media Kit
 
The Summer 2025 issue of The Chronicle is now available from Solve ME:
Solve ME website said:
We’re excited to share the newest edition of our flagship journal, The Chronicle!

Inside, you’ll find our overview of noteworthy research studies from the last quarter, including:
  • A Genetic Risk Score for ME/CFS
  • Identifying Soluble Biomarkers That Associate with Distinct Manifestations of Long Covid
  • Chronic Inflammation Raises IL-6 to Drive Neurobehavioral Symptoms via Dopamine Disruption
  • A Simple Hearing Test to Measure Cognitive Decline in People with Long Covid
  • Endogenous Retrovirus Activation in ME/CFS, Fibromyalgia, and a Newly Discovered, Related Disease
  • How COVID and Long Covid Damage Lung Tissues, and a Drug to Reverse This Damage
  • Our July 22 Webinar on the ADDRESS-LC Trial
Click to expand...

Summer 2025 Chronicle

Previous issues can be found here
 
Help Advance Science—Find a Clinical Study That Needs You
Solve ME website said:
Are you interested in learning more about current clinical trials for ME/CFS, Long Covid, and associated conditions?

We’ve launched a new webpage listing US-based clinical trials that are recruiting or soon-to-be recruiting for the following diseases and conditions:

• Dysautonomia

• Ehlers-Danlos syndrome

• Fibromyalgia

• Gulf War Illness

• Guillain-Barré syndrome

• Long Covid

• Long Lyme

• ME/CFS

• Mitochondrial disease

• PANS: Pediatric Acute-onset Neuropsychiatric Syndrome

• PANDAS: Pediatric Autoimmune Neuropsychiatric Disorder
Click to expand...

Link to Solve ME's list of clinical trials for ME/CFS, Long Covid, and associated conditions
 
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