I've gone after
@amaticahealth for what I see as obvious predatory practices: no peer-reviewed validation, marketing claims that contradict their own disclaimers, buy-now-pay-later financing aimed at chronically ill patients, years of patient sample collection with not even a single preprint to show for it.
But, people say, they're our only hope! At least they're trying to do research! My $1300 brings us closer to a solution!
If you want to do something, you have options. There are research projects and institutions out there that accept donations, both money and specimens. Below, I'll list a few. Some are no longer accepting specimens, but I highlight them to demonstrate the contrast between legit research and a money-making scheme.
1. DecodeME
Built a ~27,000-person cohort and collected saliva DNA from over 18,000 participants. Designed specifically so severely-affected patients could participate.
Did they charge participants $1300? No, it was free.
Did they offer Klarna BNPL for the privilege of donating? Obviously not.
Did they take three years and publish nothing? No: their August 2025 preprint reported 8 genetic loci linked to ME/CFS, analysed across up to 15,579 cases and 259,909 controls.
Is the data locked in a private company? No, they offer access to researchers.
That's how it's done.
2. Open Medicine Foundation BioQuest
A 1,000-sample multi-omics ME/CFS biomarker project. 400 ME/CFS, 400 healthy controls, and 50 each from four comparator groups (MS, exertional malaise/burnout syndrome, clinical depression, and Long COVID). Named investigators and peer-reviewed track record across the OMF Collaborative Centers.
How much did they charge people to collect their samples? Nothing. If you have $1300 burning a hole in your pocket, you can donate.
3. UK ME/CFS Biobank
Over 39,000 samples from 600 donors. Cost to donate? $0.
4. PolyBio Long Covid Research Consortium
Yale, Mt Sinai, UCSF, Johns Hopkins, Penn, Cardiff, Harvard-affiliated groups, and others. Findings published in journals, not Reddit threads.
5. NIH NeuroBioBank
Post-mortem brain and tissue repository that accepts ME/CFS donations. If you're interested, you can register to donate your brain while you're still alive. It won't cost you or your family anything. You can register here:
neurobiobank.nih.gov/donors-…