In the last years I read a lot of ME/CFS research studies and theories about what could be wrong in ME/CFS. I understand that research progress is very slow but I would expect that at least 1-2 of those theories will be already confirmed. I have impression that the research got stuck. What is with these studies/theories?: - hypometabolism - Davis study with the sickest pacients - something in the blood - endothel dysfunction (Fludge/Mela) - neuro inflamation (Young) - mikroglie - mitochondria problems - cytokinies - mikrobiome - muscle and lactate studies - genetic studies - etc. Do you have the same impression?
No. Not really. Progress is frustratingly slow but there's probably more going on now than ever before. The covid pandemic will inevitably have slowed things down but, on the other hand, may lead to research that helps in the long run. The most heartening thing recently, for me anyway, is the DecodeME study getting funding. On top of that the coverage of the study has been way better than I expected. Hopefully, this indicates a shift in attitudes and this shift might tempt more talent to the field of ME research. Unless we suddenly get very lucky, we're still playing a very long game though.
For me what I see as frustrating is that there seem to be a lot of small scale studies with promising suggestions, that need larger scale follow ups. But also it all feels very fragmentary, there are no evidenced over aching theories that might be able to tie all these fragments of knowledge together. Obviously we need more funding and more good researchers. We have the Decode ME study in the pipeline, but even that may only provide pointers for more research.
1) Robert Phair's metabolic trap study (labwork) is ongoing but delayed due to Covid--Phair gave a short update on PR a month or two ago. 2) Need more clinical studies of existing approved compounds that *might* work in ME/CFS--e.g. (1) JAK inhibitors (rinvoq reduces fatigue in RA https://www.rinvoq.com/); (2) Alemtuzumab; (3) quick follow up on cyclo study.
