It begs the question... When will patients be told that CBT and exercise will change gene expression in the spine and cure pain?
If I recall correctly, in very small numbers at autopsy, but about one in four of those had issues with the dorsal root ganglia.
This also begs the question, why can't this sort of research be more aggressively or earnestly addressed for ME? Oh yeah, I know why....
I've read at least one study that used some sort of therapy (don't remember if it was CBT or ACT, but something like that) and looked at epigenetics, for the persons who benefitted from therapy there was a change in epigenetic signature but not in the other group. It was a small study and I'm sure there were more problems but I don't remember much of it.
I am concerned that despite the huge amount of research and money being poured into many aspects of COVID, ME may still be left out in the cold. Knowledge and works on post viral syndromes seem to be coming on more, which is encouraging. But it would be good to see mainstream, government funded media report on the similarities between ME and Long COVID. Though that could reveal the fact that ME has been neglected for decades. Perhaps a bit embarrassing for the powers that be. Or not.
The tools and knowledge base from covid research will probably help ME research. If some covid group gets funding to develop a non-invasive tool for measuring blood flow in brain capillaries, that can also be applied to ME research. A database of glial cell properties in covid patients plus controls could also be of use for ME studies. The two diseases seem to have some relation, so there should be some overlap benefits from research.
I very much hope that with the similarities between these 2 groups, our community does benefit. That has been the hope and understanding. I don't have numbers to back up my hunch but it seems the trickle of ME research is less, now that COVID research is prominent. I hope our researchers are not over looked.
Control groups of pwME on COVID research projects would be valuable. Differences as well as commonalities could be flagged up.
Absolutely! It would be great to see comparisons of many groups such as ME, COVID, MS, FM, Chronic Lyme Disease (if I have the term right) and others. ( I used to dream of a normal, healthy, productive life; a fulfilling life. Now I dream of ME research!)