USA: News from Solve ME

[Hutan]

Really disappointing to see SolveME being involved in research of two devices (a headset that shines infrared light on the scalp and in the nose, and a hand held device that claims to stimulate the vagus nerve). It's not so much the devices, although they both sound questionable, it's the idea that having people borrow the devices for 1 to 3 months and submit data about how well they worked is going to give useful information.

SolveME continues to be a mixed bag. I don't think this sort of thing helps their credibility at all. I wish they would be a bit more discriminating about what they support.

This project is built around a device lending library. Patients diagnosed with ME/CFS or Long COVID borrow promising therapeutic devices, shipped directly to their homes at no cost to them, for a 1-3 month lending period. While borrowing, participants contribute standardized longitudinal data through the Brain Inflammation Collaborative/Solve ME unhide® Solve Together platform. This allows each lending cycle to be a real-world research opportunity.

Discussed on the Renegade Research thread - here

 

[ahimsa]

Article from Solve ME:

"Solve-Funded Phase 2 Observational Study Yields More Support for Repurposing Rapamycin to Reduce a Broad Range of ME/CFS Symptoms"

Solve-Funded Phase 2 Observational Study Yields More Support for Repurposing Rapamycin to Reduce a Broad Range of ME/CFS Symptoms - Solve ME/CFS Initiative

The latest Solve and Simmaron-funded study by Dr. Avik Roy and Simmaron Research published in the Journal of Translational Medicine indicates key questions for future rapamycin trials for ME/CFS and lays the groundwork for repurposing treatments.

solvecfs.org

 

[Utsikt]

Article from Solve ME:

"Solve-Funded Phase 2 Observational Study Yields More Support for Repurposing Rapamycin to Reduce a Broad Range of ME/CFS Symptoms"

Solve-Funded Phase 2 Observational Study Yields More Support for Repurposing Rapamycin to Reduce a Broad Range of ME/CFS Symptoms - Solve ME/CFS Initiative

The latest Solve and Simmaron-funded study by Dr. Avik Roy and Simmaron Research published in the Journal of Translational Medicine indicates key questions for future rapamycin trials for ME/CFS and lays the groundwork for repurposing treatments.

solvecfs.org

It’s crystal clear that they lack an understanding of the fundamental scientific principles.

All we had was an open label study. Then they did another open label study. That’s not more evidence because it doesn’t give us any more info or any info with a higher degree of certainty.

More evidence would be to do a blinded study and get a positive result there as well.

Saying this is more evidence is exactly like the recent brain retraining paper where gathered more anecdotes. It’s still useless.

 

[Sean]

All we had was an open label study. Then they did another open label study. That’s not more evidence because it doesn’t give us any more info or any info with a higher degree of certainty.

Exactly. A pile of methodologically weak open label studies does not form a robust body of evidence for their claim.

It is evidence for something. But not for their claim.

 

[V.R.T.]

All we had was an open label study. Then they did another open label study. That’s not more evidence because it doesn’t give us any more info or any info with a higher degree of certainty.

More evidence would be to do a blinded study and get a positive result there as well.

The fact they did this instead of a blinded study makes me strongly question the motives of the people invovled.

There is no world in which it makes any sense not to follow an open label study with a blinded one unless your motive is something other than proving the drug works.

 

[Utsikt]

The fact they did this instead of a blinded study makes me strongly question the motives of the people invovled.

There is no world in which it makes any sense not to follow an open label study with a blinded one unless your motive is something other than proving the drug works.

At least if we assume they are competent.

 

[ahimsa]

"Research 1st Roundup: July 2026"

Research 1st Roundup: July 2026 - Solve ME/CFS Initiative

Solve's survey of notable studies published this quarter includes information on the roles of specific autoantibodies and persisting viral components in driving distinct symptoms of Long Covid and ME/CFS.

solvecfs.org

This quarter’s summaries highlight several studies examining the biological mechanisms of ME/CFS and Long Covid, including the roles of specific autoantibodies and persisting viral components in driving distinct symptoms. Several of the studies were led by Solve-funded researchers and collaborators, including Dr. Akiko Iwasaki, Dr. Amy Proal, Dr. Carmen Scheibenbogen, Dr. David Putrino, and Dr. Jonas Bergquist.