USA: News from Solve ME

ScoutB said:
I was actually thinking about your posts on r/cfs after writing this. It's so great you're active on there. Agree with your concerns. And I know when my views change on things it's mostly from gentle exposure, not one argument, so sounds like you've got the balance just right.
Click to expand...
This really means a lot, thank you.

I’m much less active than I used to be. It was so important to me when I was early in my illness. I don’t need it as much, but I still want to give back to the community that helped me. I just hope I can help some people get interested in the science like me.
 
@Hutan - Thanks for your efforts with Emily and Solve. It’s disappointing to hear that Emily did not seem moved by these legitimate concerns about study design and investment in open label studies with subjective outcomes.

There is a wide gap between the awareness of these issues on this forum and other social media channels where there is much less critique and skepticism. I wonder what can be done about that. I don’t know what the solution is, whether it involves continuing to invite advocates and researchers to the forum, finding more ways to spread our discussions outside the forum, etc. But there does seem to be quite a disconnect.
 
mariovitali said:
Lately I read here that most likely the majority of studies are not to be taken seriously. Pretty bleak picture if you ask me.
Click to expand...
I don't see things as bleak at all. There are lots of good things happening. It just would be great if the patient charities were contributing to those good things and contributing to ensuring the patient community are well-informed consumers of treatments. Because we all want to get to a better understanding of the illness as fast as possible.
 
mariovitali said:
Lately I read here that most likely the majority of studies are not to be taken seriously. Pretty bleak picture if you ask me.
Click to expand...

This is the first thing you learn in biomedical science @mariovitali. Most studies are junk. But there is nothing bleak about that. You realise how easy it would be to do better and then after a while you find you can.
 
Hutan said:
It is hard to understand why people struggle to understand how biased, and therefore how useless, an open label trial with subjective outcomes is. They seem to be being influenced by patients contacting them saying how wonderful, how life-changing these treatments have been.
Click to expand...
Thank you for your efforts, Hutan. And thank you to solve for being willing to meet.

I have seen the same happening elsewhere. And it’s not just advocacy or funders. It’s one of the reasons for why health care practitioners push their treatments - because they believe they’ve seen it work and people tell them it works.

None of the ones I have spoken to have been able to give logically coherent answers about how they can know it works based on the data they have. It usually ends up with them admitting that we strictly speaking do not have proof of causality, while still maintaining that it’s fine to say that «some benefit» or something else that implies causation because that’s what the patients reported. One of those people is involved in distributing tens of millions of euros in research funding annually..

@ScoutB that’s a perfect description of my experience as well.
 
voner said:
Who is their current "Science Manager"? it’s not necessarily clear who it is from their website.
Click to expand...
Yes, a good question. A name was not mentioned and I forget the actual term used, but it wasn't any of the titles. Here's the website link to the team.
There's Sadie Whittaker, Chief Scientific Officer, Jessica Maya, Vice President of Scientific Programs, and H. Timothy Hsiao, who is something called a 'Ramsay Fellow'. I assume they all are involved in the recent research decision-making, and so might all be good people to talk to about it.

This is Tim, the Ramsay Fellow's, bio:
With more than two decades of research and scientific management experience, Tim joins Solve M.E. with the passion to strategically accelerate M.E./CFS research with and for patients, their families, and the broader community that share the interest in combating infection-associated chronic illnesses. Tim believes that medical research not only enriches the collective knowledge of humankind but also, more importantly, brings hope to patients.

Immediately before joining Solve M.E., Tim exercised leadership to steer the research and alliance strategy in a non-profit setting and mobilized the government, research foundations, and private sector stakeholders to partner and advance medicine together. Previously, Tim oversaw a multi-million-dollar portfolio of federal investments in scientific research as Program Director for the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH). In addition, Tim worked in science policy for the NIH Office of the Director, small business innovation for the National Institute of Allergy and Infectious Disease (NIAID), and epigenetic research for the National Cancer Institute (NCI). He has been recognized by awards such as the NIH Director’s Award, NCATS Director’s Award, NIAID Merit Award, the U.S. Department of State Embassy Science Fellowship, and the American Association for the Advancement of Science (AAAS) Science and Technology Policy Fellowship. Tim holds a Ph.D. in Molecular Biophysics & Biochemistry from Yale University.
Click to expand...
We've seen OMF's commitment to bringing hope to patients, and Tim at SolveME seems to believe in the same. But well-grounded hope is a by-product of good science; hope as a direct short-term objective could easily lead to the sorts of projects we have seen coming out of SolveME lately. I see Tim's track record in mobilising private sector stakeholders and the NIH's National Center for Advancing Translational Sciences and that also makes me wonder if he is the person driving these recent initiatives.
 
Last edited:
Ah, I see that Tim Hsiao has moved on from SolveME. This is a press release from July 2026:
WASHINGTON — The Association for Diagnostics & Laboratory Medicine (ADLM) is pleased to announce that H. Timothy Hsiao, PhD, CSAP, has been named chief scientific officer for the organization, effective July 21.

Dr. Hsiao brings more than 15 years of experience leading scientific programs and strategy across the federal government, nonprofit sector, and scientific societies, with a focus on diagnostics and data-driven healthcare. Most recently, he served as principal advisor and senior innovation strategy and management advisor through an Avantiqor contract providing systems engineering and technical assistance to the Advanced Research Projects Agency for Health. In this capacity, he advised on the development of national-scale innovation programs and evaluated emerging technologies in advanced diagnostics and data science, including microfluidic liquid biopsy, quantum sensing, multimodal data integration, artificial intelligence, and quantum computing.
Click to expand...
Before that, Dr. Hsiao served as chief scientific officer and head of research strategy and alliances at the Solve ME/CFS Initiative. In that role, he led scientific strategy for precision medicine, diagnostics, and clinical research in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He also directed a real-world data platform and established research partnerships with academic institutions and industry.
Click to expand...

The press release suggests that Tim may have served as 'Chief Scientific Officer and Head of Research Strategy and Alliances' at Solve ME and 'established research partnerships with .. industry'. So it does seem likely that he had some significant responsibility for these problematic trials. It does leave questions about who is actually in charge of research at Solve ME.
 
Tim Hsiao was appointed to SolveME in 2023 as Chief Scientific Officer:
Solve M.E. is pleased to announce that H. Timothy Hsiao, Ph.D. recently joined us as Chief Scientific Officer, Head of Research Strategy and Alliances!
In this role, Tim will create a roadmap for advancing translational research, oversee Solve M.E.’s research investments, and forge collaborations with other research-focused organizations.
Click to expand...
In addition, I aspire to work with ME/CFS and Long Covid researchers to take advantage of some of the new translational science tools (such as decentralized, remote/virtual, and adaptive trial methodologies) that were initially developed for other fields of research, to inspire new and improved study design and implementation for ME/CFS and Long Covid. We will also closely examine how to best harness computational technologies, such as artificial intelligence/machine learning and edge computing/federated learning, with the hope of enabling quantum leaps in our understanding and diagnosis of ME/CFS and other IACCs.
Click to expand...
It seems possible that he got carried away with remote/virtual trial methodologies and approaches like the 'stepped wedge', and forgot about basic boring research methodology to control bias.

It leaves the question of who is in charge of science programs at SolveME now and what they stand for. And if Tim Hsiao retains any role in the organisation e.g. as the Ramsay Fellow thing.
 
Last edited:
SolveME announced this in January 2026:

Strengthening Scientific Leadership: Dr. Sadie Whittaker Returns to Solve as Chief Scientific Officer​

Solve M.E. is pleased to welcome Dr. Sadie Whittaker back to the organization as Chief Scientific Officer, a role in which she will continue to guide our scientific strategy and research priorities.

Sadie previously served as Solve M.E.’s Chief Scientific Officer (2018-2021). She led the organization’s research strategy, launched the You + ME® Registry and symptom tracking app, and built strong partnerships with researchers, clinicians, and patient communities to advance understanding of ME/CFS.

Sadie has broad scientific and clinical expertise and has held several C-suite positions within biotech start-ups, where she has guided therapies from early development through pivotal trials and regulatory milestones.

In this role, Sadie will provide strategic oversight of our research portfolio, advise on emerging scientific opportunities, and support key partnerships that advance our mission.

Sadie remarked, “I’m thrilled to be back at Solve M.E. as Chief Scientific Officer! I’m looking forward to reconnecting with the ME/CFS community to push the science forward, strengthen partnerships, and uncover new opportunities where Solve can make an impact. Together with this community, I am determined to translate rigorous, patient-centered science into meaningful change for people living with ME/CFS and related diseases.”

This appointment reflects Solve M.E.’s commitment to patient-centered science and thoughtful stewardship of resources—ensuring continuity while accelerating progress where it matters most.

We are grateful to continue working with Sadie as we push forward urgently needed research and understanding.
Click to expand...
So, that starts to make sense. Sadie Whittaker was Chief Scientific Officer from 2018-2021, and now is again. It will be really good to understand what her plans are at Solve.
 
Hutan said:
Yes, a good question. A name was not mentioned and I forget the actual term used, but it wasn't any of the titles. Here's the website link to the team.
There's Sadie Whittaker, Chief Scientific Officer, Jessica Maya, Vice President of Scientific Programs, and H. Timothy Hsiao, who is something called a 'Ramsay Fellow'. I assume they all are involved in the recent research decision-making, and so might all be good people to talk to about it.

This is Tim, the Ramsay Fellow's, bio:

We've seen OMF's commitment to bringing hope to patients, and Tim at SolveME seems to believe in the same. But well-grounded hope is a by-product of good science; hope as a direct short-term objective could easily lead to the sorts of projects we have seen coming out of SolveME lately. I see Tim's track record in mobilising private sector stakeholders and the NIH's National Center for Advancing Translational Sciences and that also makes me wonder if he is the person driving these recent initiatives.
Click to expand...

It would be nice if you could get the name of the other person from Solve ME/CFS that you will meet with.

I think it would be really helpful to get them to delineate what their decision-making process tree for funding research projects looks like and how it proceeds. It might help make your lobbying process more efficient. I’d be especially interested in if the board of directors or the scientific advisory board have input or a veto power.

Perhaps there are other ways to encourage the decision-makers at Solve ME/CFS to at least monitor this forum if not actively participate???
 
The study is SIGNAL, a Renegade Research project, We have various comments about it scattered over threads including the Renegade Research and Jarred Younger threads. It is definitely an 'observational study' so no sham treatments, even though Younger refers to it as a clinical trial.

People involved:
SIGNAL is led by Tess Falor, PhD (@tessfalor) as Project Director; Todd Davenport, DPT, PhD, MPH (@sunsopeningband) & Maya Lindemann, RN, BSN (@mayalongcovid) as Co-PIs; Jarred Younger, PhD as Advisor; John Haughton, MD, MS (@doc4care) as Medical Advisor and Rivka Solomon, MS (@Rivkatweets) as Advisor.
Click to expand...
It seems that SolveME is only the funder; it doesn't seem to have a role directly in the study.

I'm particularly keen to try to get SolveME to ensure that there are sham treatments with proper blinding on this trial of the two commercial devices. There seem to be lots of people involved (see Younger's video) and Davenport, it's a Renegade Research trial funded by SolveME. And there are some sensible people on SolveME's Scientific Advisory Board, so perhaps there are multiple angles to apply pressure on.


If the trial goes ahead without sham treatments, these companies are going to sell so many units, and it all just contributes to the picture of 'fringe treatments for a fringe disease'.
 
Last edited:
Hutan said:
It is hard to understand why people struggle to understand how biased, and therefore how useless, an open label trial with subjective outcomes is.1 They seem to be being influenced by patients contacting them saying how wonderful, how life-changing these treatments have been. 2
Click to expand...
1 Some of those people are almost as much blinded by the "we have to give people hope"- narrative as the Brain-Retraining people.

2 personally I find this a bit weird as I couldn't even find many positive Rapamycine anecdotes on patient forums or in self-help groups etc... and from the few I found maybe 2 could be described with the word "life changing". Not that much for a treatment that is available without a Drs. visit in the U.S.
I write this because mostly benefits for off-label treatments in ME seem to look so much better when counting anecdotes or unrepresentative and subjective surveys than when looking at clear clinical and functional benefits, but Rapamycine doesn't even looks promising when searching for anecdotes.
 
Hutan said:
The study is SIGNAL, a Renegade Research project, We have various comments about it scattered over threads including the Renegade Research and Jarred Younger threads. It is definitely an 'observational study' so no sham treatments, even though Younger refers to it as a clinical trial.

People involved:

It seems that SolveME is only the funder; it doesn't seem to have a role directly in the study.

I'm particularly keen to try to get SolveME to ensure that there are sham treatments with proper blinding on this trial of the two commercial devices. There seem to be lots of people involved (see Younger's video) and Davenport, it's a Renegade Research trial funded by SolveME. And there are some sensible people on SolveME's Scientific Advisory Board, so perhaps there are multiple angles to apply pressure on.


If the trial goes ahead without sham treatments, these companies are going to sell so many units, and it all just contributes to the picture of 'fringe treatments for a fringe disease'.
Click to expand...
Todd Davenport is pretty active on X/Twitter and also sometimes answers to interested patients there; Jarred Younger often answers to comments on his youtube-channel, so maybe it could be worthwhile trying to contact them via those routes and comment on those planned studies.
Tess Falor of Renegade Research also often answers to comments on her X/Twitter posts if you have feedback about the stuff Renegade does.
 
Getting distracted by this problem again.

When trying to change bad practices or habits it's often more effective to show people how to do the right thing, rather than trying to make them understand how their current way of doing things is going wrong.

To that end, I'm dreaming of S4ME having some sort of presentation on good science practices that a member or two** could go around giving to charities (and maybe some researchers as well). Inspired by Larry Weed's presentations on record keeping. There are a million incentives to do science badly and the main thing that seems to convince researchers to do better is seeing other people's bad practices lead to huge problems (i.e. fields going nowhere for decades then being completely falsified by new research, wasted time and money, unreplicable results...). It's easier to see the problem when it's someone else doing it!

So such a presentation could include stories from the replication crisis, and use those as incentive while recommending best practices. Obviously there's already lots of info out there on best practices, but I feel like having something specific to ME/CFS research is justified.

It wouldn't change the culture overnight, but maybe it could start pushing things in a better direction. If ME/CFS researchers just got more skeptical of each other's research (even if not their own) that'd already be a step forward. And it might help frame S4ME as a place offering assistance to people interested in doing good science.

**I have a little more energy than normal for one week and start deluding myself that I'm up for this kind of thing again haha. But maybe someday...
 
I listened to the Renegade Research webinar about Truvaga just before, the vagus nerve stimulator, and the forthcoming SIGNAL project which SolveME is funding.

Jessica Maya, SolveME's Vice President of Scientific Programs spoke briefly. She said that SolveME is really really pleased to support Renegade Research, and she's really really excited about this translational patient-centred work.

There was no note of caution, just enthusiastic support.

I'll put my other notes about the webinar on the Renegade Research thread
 
Last edited:
You must log in or register to reply here.
Back
Top Bottom