I’ve tried 14 of these, and then some. IVIg, midodrine, and Mestinon are the ones on the list I’d most highly recommend; tVNS not on the list; and exercise-based physical therapy once you’re doing some of these things and want to test if it’s working well.
📢 Researchers! The Congressionally Directed Medical Research Program (CDMRP) is taking applications for the 2026 Peer-Reviewed Medical Research Program (PRMRP) Awards. Areas include #MECFS, Ehlers-Danlos Syndrome, & Mitochondrial Disease, among others.
Learn more: https://ow.ly/HPv150YrACP.
UCSF study of 36 people with Long COVID finds a single infusion of the SARS-CoV-2 antibody AER002 was safe but did not improve symptoms or quality of life versus placebo though people with lower virus antibody levels showed hints of benefit.
www.medrxiv.org/content/10.6...
Last week a long article about #BC007 was published here in Germany.
In short: A new company named APTA Therapeutics, which largely consists of former BerlinCures employees, will continue to explore the drug's potential for #MECFS and #LongCOVID.
www.riffreporter.de/de/wissen/lo...
Recruitment call 📣
The Baker Institute / Uni of Melbourne are recruiting adults (18+) with ME/CFS or orthostatic intolerance for a study in Melbourne (2 clinic visits, parking + time reimbursed).
More info: zurl.co/tYcRE
#MECFS #EmergeAustralia #BakerInstitute
1) 🇰🇷 A study from South-Korea shows that Metformin (the diabetes drug) and Ursodeoxycholic Acid (a bile acid) are not effective in Long Covid.
Most patients improved at lot, even those in the placebo group.
Breaking News: Dr. Vinay Prasad, a polarizing figure at the FDA who oversaw vaccines, is leaving the agency. As the FDA’s chief science and medical officer, he made several controversial decisions, including overruling career scientists on some vaccine approvals.
1) Prof Jeroen Den Dunnen won a prestigious Vici grant (€ 1.5M) for his research on antibodies in post-acute infection syndromes such as ME/CFS.
Vici is one of the largest personal scientific grants in the Netherlands. It's the first time it has been awarded to PAIS research.
1) 🇩🇪 The steering committee for the National Decade against Post-Infectious Diseases agreed on three measures to be implemented at the start of the decade, includes a genome sequencing project.
(An automatic translation of the German statement is pasted in the image below)
Great news!
1) This new paper in the Lancet suggests that the risk of Long Covid has substantially decreased compared to the pandemic period. The excess prevalence of severe symptoms self-attributed to SARS-CoV-2 was only 0.3% after 180 days.
A brief breakdown...
RECOVER-TLC seeks input on planned study of possible Long COVID treatment [stellate ganglion nerve block (SGB)]
recovercovid.org/news/recover...
#LongCovid #SGB
“Fourteen-day tVNS enhanced cardiovagal modulation, reduced sympathetic activity, and improved orthostatic symptoms in Hyper-POTS patients. Additionally, some benefits persisted beyond the stimulation period. Thus, tVNS could potentially be used as an additional therapeutic tool in Hyper-POTS.”
5) For people in the US:
Yarred Younger registered a trial of LDN here:
clinicaltrials.gov/s...
David Systrom is also testing LDN in the LIFT trial, more info here:
www.omf.ngo/the-life...
4) At the end of 2026, they hope to recruit in Victoria. To register your interest or request further information, people can email: ncned@griffith.edu.au
Info taken from:
www.facebook.com/100...
1) 🇦🇺 The NCNED team of Prof. Sonya Marshall-Gradisnik is launching a double blind trial of low dose naltrexone (LDN) in patients with ME/CFS.
They are currently looking for patients diagnosed by the CCC/ICC located in South-East Queensland and Northern New South Wales.
“The Food and Drug Administration reversed course and told Moderna it would review its application for a new flu vaccine… The FDA will now review the product in adults 50 to 64 through a regular pathway, and adults over 65 via accelerated approval with a requirement to run a post-marketing study.”
I use inTENSity from this brand
The downside of other high-income countries negotiating down drug prices so far and relying on the US’s crazy prices to fund pharma R&D is that when we elect an anti-vax moron, nobody gets vaccines anymore. It’s not just defense that Europe has outsourced to America.
Brief description: double-blind, placebo-controlled investigation of pyridostigmine (Mestinon) and low dose naltrexone (LDN)
Time required: 3 months, 3 onsite visits, 4 virtual visits
Study tasks: sub-maximal exercise test(s), biweekly questionnaires and brain games, blood draws
The Mestinon/LDN Life Improvement Trial (LIFT) is seeking eligible research participants now within 300 miles of Brigham and Women’s Hospital at Harvard Medical School.
Learn more about the LIFT: https://clinicaltrials.gov/study/NCT06366724
3) Low-Dose Sirolimus (Rapamycin) for Long COVID
clinicaltrials.gov/study/NCT069...
4) NE3107 for Long COVID
clinicaltrials.gov/study/NCT068...
5) Tafenoquine for Babesiosis with Severe Fatigue
clinicaltrials.gov/study/NCT066...
1) Lumbrokinase for LC, ME/CFS, Post-Treatment Lyme Disease
clinicaltrials.gov/study/NCT065...
2) Antivirals for Long COVID
Trial will test if two repurposed HIV antivirals can reduce symptom burden in adult participants with Long Covid compared to placebo.
clinicaltrials.gov/study/NCT065...
One of the best sites running a wide variety of clinical trials for #LongCovid and other IACCs is @coresinai.bsky.social, via @putrinolab.bsky.social !
At least 5 trials are currently recruiting - see links below for eligibility!
👏
1) The Dutch NMCB research consortium held its General Assembly. Researchers of multiple ME/CFS studies reported their current status and findings.
Here are a couple of things that caught our attention...
…got nowhere to go. I can see how if you have a mortgage you wouldn’t want home values to fall a ton, but rising values don’t really help anybody (most people like where they live and want to retire there, not in West Virginia or Mexico or somewhere much cheaper).
Are you planning to sell your home and move to a much lower cost-of-living place in retirement? If not, I’m not sure how high home values help you. The cost of living goes up since everybody who provides you services demands more money for rent, and you can’t sell your home since you’ve…
A team at Amsterdam UMC will test fluvoxamine (an SSRI) as a treatment for #PostCOVID in a phase III RCT.
Fluvoxamine “may reduce PC symptoms because of its regulatory effect on the (neuro) immune system, the HPA axis and the tryptophan system.“
clinicaltrials.gov/study/NCT073...