It has been my hope that the number of me/cfs cases would finally drive enough research into autoimmune disorders in general, that we might finally figure it out. It seems very poorly understood from an outside perspective.
There is no funding and since Long Covid appeared the funding for ME/CFS has completely vanished. If Long Covid ME like illness is the same then ME/CFS is getting lots of research right now, on the other hand if they turn out to be different ME/CFS patients are getting completely ignored.
Many ME experts are doing both. RECOVER is considering adding ME/CFS arms to its huge clinical trial platform. UCSF just added ME/CFS as a priority in their LIINC program.
SARS-CoV-2 therapeutics won’t work on both but immune cell based ones may given they haven’t been tested in either yet.
Both suggest a root cause of persistent viral antigen. Time will tell what works here.
RECOVER is the biggest scam when it comes to research unfortunately. 90% of their studies are focusing on various form of "brain exercises", CBT therapy and exercise therapy. Things that are not only proven to not work, but actually proven to harm people with ME/CFS (of which long covid patients make up a large amount).
They fund and do a lot of work beyond the horrible choices for initial RCTs. This fall we should hopefully see actual pharmaceutical interventions and a plethora of research they’ve been publishing.
The more important parts of their programs are the omics and tissue biopsy programs.
For what’s it’s worth, autoimmune drugs are amongst the highest grossing due to their cost. Rheumatoid arthritis, psoriasis, MS all do have a lot of study. I wouldn’t say it’s enough, but I don’t think the prevalence of me/cfs alters anything due to the high prevalence of the other diseases. Immune disorders are definitely mysterious though
