Various surveys so far suggest that ME/CFS, Long COVID, and post vax overlap heavily in terms of symptoms.
The practical takeaway is that chronic illness groups can extrapolate from what worked or what didn’t work for other groups.
- HBOT is the most proven treatment for Long COVID
- Rituximab doesn’t work for ME/CFS
- Survey data from the Patient Experiences Survey (and Treatment Outcomes Survey) point towards promising treatments.
- John Chia has some interesting ideas on treating ME/CFS.
The data
Patient Experiences Survey
I also performed a cluster analysis on the data, which found a distinct vax injured subgroup. However, it is probably an artifact of vax injured support groups rather than a medical difference. See slides 41-43 and 50-56 in version 2 of the slides.
Tom Bunker’s survey on LC and post vax
Symptom frequencies lined up.
Long Vax = Long Covid ? – Speeding Recovery from Long Covid
David Marks - MECFS versus LC
Biomedicines | Free Full-Text | Converging Evidence of Similar Symptomatology of ME/CFS and PASC Indicating Multisystemic Dyshomeostasis
MEAction is coming out with their survey on MECFS and LC, but I don’t think it’s out yet.
Limitations of surveys
People often misinterpret survey questions so they end up reporting ‘symptoms’ that they do not have. Higher quality surveys could greatly reduce this problem.
Another issue is that the “symptom” frequency depends heavily on survey design. This problem can be eliminated if the same survey is given to multiple chronic illness groups.
Genetic studies such as GWAS
GWAS = genome wide association study
Once the GWAS study on ME/CFS is completed (DecodeME), its results can be compared to the Long COVID GWAS study. A low number of potentially causative (or preventative) genes would suggest that the conditions are very similar.
