It has been going on for a while. Check their Twitter feed—it is chock full of BS included homeopathic medicine, etc.
https://twitter.com/user/status/1919422754270376365
News from the Institute of Neuroimmune Medicine (INIM), NOVA, Nancy Klimas
- Thread starter Sasha
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It has been going on for a while. Check their Twitter feed—it is chock full of BS included homeopathic medicine, etc.
https://twitter.com/user/status/1919422754270376365
That’s one opinion. But she is director of this institute and should be responsible for all this nonsense.
They've got some sensible stuff out and some good science and then there's this. Somehow feels worse than only having the crap on there.
JemPD
Senior Member (Voting Rights)
haha I posted that same song on another thread, about nonsense coming out of Solve
Excerpt from the link:
The study will test whether the monoclonal antibody sipavibart, which is approved for the pre-exposure prophylaxis (prevention) of COVID-19 in Japan and the EU, is effective in treating Long Covid. The trial, which the FDA reviewed and cleared for the study earlier this year, is one of three Long Covid treatment trials expected to begin in 2025 that have been initiated and funded by SILC, a nonprofit organization founded in 2023 by philanthropists Eric and Wendy Schmidt to advance Long Covid care for patients globally.
“Long Covid affects at least 65 million people worldwide, and with more than 200 symptoms, the health impacts of the disease can be debilitating,” said Dr. John Redd, CEO of SILC. “SILC is dedicated to eliminating Long Covid worldwide, especially in under-resourced countries and communities, by bringing together practitioners to treat patients and by funding research such as monoclonal antibodies and repurposing existing drugs.”
Said Dr. Ken Dawson-Scully, NSU’s senior vice president for research and associate provost, “This trial represents our overall commitment to addressing the most pressing health challenges of our time. By collaborating with the Schmidt Initiative for Long Covid, we're leveraging our research expertise to potentially transform treatment options for millions suffering from Long Covid, advance knowledge, and improve patient outcomes through innovative clinical research.”
At the height of the pandemic, Florida was the national leader in utilizing monoclonal antibodies to treat patients who had been diagnosed with COVID, administering more than 200,000 doses throughout the state. In 2024, researchers from the state published a study in the American Journal of Emergency Medicine detailing how a small group of these patients’ Long COVID symptoms disappeared after they received the monoclonal antibodies to prevent or treat acute episodes of the virus. When Redd—who was a leader of the U.S. Department of Health and Human Services’ response to the virus and helped distribute the antibody therapeutics to Florida years earlier—came across the study, he contacted the authors to organize a collaboration, leading to this trial.
In the double-blind, randomized and controlled trial, researchers will divide patients into two evenly split groups to receive infusions of either a placebo or sipavibart, which targets the unique spike proteins of the Covid virus. Patients will be evaluated every three months for improvement in Long Covid symptoms including cognitive dysfunction—lapses in attention, concentration or reaction time—heart rate or blood pressure dysregulation and other autonomic nervous system effects, and tolerance for exercise. Researchers will also test for any lingering spike proteins in patients, including potentially in plasma and stool samples, and create a repository of blood and other specimens for further study.
Nightsong
Senior Member (Voting Rights)
NIH Awards NSU Researchers $3 Million to Study Potential Link Between Mold Exposure and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Press release
Press release
I sighed when I read this. And it's not because I think it is impossible that exposure to mould toxins could trigger ME/CFS. I think it is possible.
We know that people with ME/CFS have gone to live in deserts, and I don't think it cures them. We haven't seen any evidence, not even anecdotes, that people who live in the tropics, where moulds flourish in the humidity and where buildings are very often not water-tight, have worse ME/CFS. Or that symptoms worsen in the rainy seasons.
I really hope they will find something useful. I'm aware that I am picking holes in this. It's just that this is a huge amount of money to put to this in one lump rather than in a staged grant where more funds come if something useful is found, and it's gone to a group that does not have a great track record. I don't know how this group keeps getting funded so well.
Hopefully they will prove my pessimism completely unwarranted.
But this study isn't looking at the toxins as a trigger that tip a body into ME/CFS. They are looking to see if mould toxins affect the symptoms of people with existing ME/CFS. I guess that is slightly interesting, but it's not the same thing.
We know that people with ME/CFS have gone to live in deserts, and I don't think it cures them. We haven't seen any evidence, not even anecdotes, that people who live in the tropics, where moulds flourish in the humidity and where buildings are very often not water-tight, have worse ME/CFS. Or that symptoms worsen in the rainy seasons.
Also, part of the reason for the sigh is that we haven't seen high quality science being done by this group, as a rule. I mean, I know there are cultural differences, but when I see 'College of Osteopathic Medicine', I feel uncomfortable. And, it's not sounding as though the focus is genomics, a professor of biochemistry might be more appropriate. And the associate professor of genomics is talking about the fact that we 'don't fully understand what causes the disease to start'. Well, I don't think we understand what causes ME/CFS to start much at all. And the research is not looking directly at what causes the disease to start, only what makes the symptoms of existing disease worse.
I don't know what these 'advanced techniques' are. I hope they involve suitable controls.
I really hope they will find something useful. I'm aware that I am picking holes in this. It's just that this is a huge amount of money to put to this in one lump rather than in a staged grant where more funds come if something useful is found, and it's gone to a group that does not have a great track record. I don't know how this group keeps getting funded so well.
Hopefully they will prove my pessimism completely unwarranted.
It is allowed. I thank you for this post. It’s also pretty shocking that they were able to obtain funding for this project given the large cuts in the NIH budget from the current administration.
Only part I disagree with is the osteopathic medicine part.
In the U.S. osteopathic medicine is now basically indistinguishable from MD medicine.
“The training of osteopathic physicians in the United States is now virtually indistinguishable from the training of allopathic physicians (MDs).” From wiki.
Osteopathic medicine in the United States - Wikipedia
However most of DO programs (with one or two exceptions) would be considered 2nd tier relative to MD programs. And most have negligible research programs.
So your negative reaction to college of OM, while technically a bit incorrect, is actually mostly correct. Does this make sense?
If @betsyladyzhets is still on here this would be a good story for the Sick Times to cover and to ask some tough questions.
shak8
Senior Member (Voting Rights)
I guess mold is a huge indoor problem in Florida where Nova Southeastern U is located. So are outdoor invasive snakes and the ubiquitous native alligators.
Is the NIH granting process now tainted by the current politics to a degree where the funding doesn't make a lot of scientific sense?
Yes, it does. I was aware that a qualification in 'osteopathic medicine' in the US isn't as different to a qualification in standard medicine as it sounds - but, like I said, it still makes me uncomfortable. It seems to make the stuff you mentioned above more likely e.g.
(That said, we've seen organisations that really should be reputable, the Mayo Clinic and the like, offer pretty weird stuff too.
It actually all reminds me of a paper I was reading about the 20th century history of medicine in China. The type of medical care the state supported depended a lot on politics including nationalism, fads and expediency. But, in the end, people want to get care that makes them better. So, if it is possible, that is what the system eventually moves to.
Edit: Here's the link to the thread for the paper - Between Party, People, and Profession: The Many Faces of the ‘Doctor’ during the Cultural Revolution, 2018, Gross et al
(I cross-posted with @shak8 but I see we have come to a similar conclusion.)
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If someone in the NIH was thinking strategically about where to put funding, they could have given SequenceME $1 million dollars and still had $2 million dollars to placate whatever constituency is demanding that the effect of mould toxins on ME/CFS symptom severity be a priority topic of investigation..
ScoutB
Senior Member (Voting Rights)
Yeah, despite being very interested in this question I had the same reaction.
The *sketchy research -> stigma -> sketchy research* doom loop around mold makes a lot of bad ME/CFS research look good by comparison.
As an inadvertent connoisseur of leaky houses I also don't know you'd even begin to really test this. A few years ago we lived in a house in a dry area and the master bedroom started smelling a tiny bit musty from time to time (we weren't even thinking about it having anything to do with my health, it was an issue for my partner's asthma). Eventually we discovered the wall cavity between that room and the adjacent bathroom was full of powdery mildew, probably just due to trapped humidity (we never found a major leak).
So I'm pessimistic about being able to easily and accurately gauge the water damage of houses the way you'd want to for a study.
Also we don't even know enough to know if we're looking for a mold, or a water damage-loving bacteria, or one of the vocs that causes the musty smell...
It seems so intractable I sort of think the fastest route to finding a mold->ME/CFS connection (if one exists) would be through regular ME/CFS research. If we had a biomarker or some other way of diagnosing people early on, then maybe we'd notice if a whole bunch of people are entering a mild/prodrome ME/CFS-state around the time their basements flood or whatever.
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Jonathan Edwards
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
I suspect so. 3 million is a lot to go in this direction.
Yann04
Senior Member (Voting Rights)
I wouldn’t discount the possibility. „Mould“ sounds like a very RFK Jr sort of thing to blame symptoms on.
Personally our appartment has had intermittent mold problems and I‘ve noticed no correlation with my illness symptoms or severity. Obviously it‘s possible, even likely, that pathological mold can worsen and cause symptoms in people with ME, but I don‘t see much to suggest it would be any more than people who are similarly chronically ill.
And unfortunately I don‘t trust this team to properly evaluate this.
shak8
Senior Member (Voting Rights)
New York Times article today about osteopaths vs MDs:
www.nytimes.com
So Your Doctor Is a D.O. Does That Matter?
The number of osteopathic doctors has increased dramatically. People still don’t know what they are.