Sharing this event & panel discussion from last week that contains a fair amount of ME discussion (the Q&A part with the researchers & clinicians begins around the 39 minute mark). Features Dr. Levine, Dr. Lipkin, Dr. Oved Amitay from Solve
Dr. Lipkin:"The field of ME/CFS has made enormous strides over the past several years. What we've learned is that it is not a single disease. There are many different disorders that present with similar phenomenon. The same thing is likely to be true with Long COVID.The question will be how do these all converge through the final common pathways, to result in this disorder that we receive as fatigue, cognitive dysfunction, and some of the other phenomena that you hear people describe.
We are very concerned that in the process of investing in Long COVID, without adequate attention to ME/CFS in parallel, that opportunities to identify the triggers in Long COVID, ME/CFS, Gulf War Illness, similar kind of conditions, may be missed.What I think in terms of what we need to do now, and I would encourage anybody involved in this call to pursue this, is to look at the ME/CFS literature very carefully because I think you will find clues there that may be helpful in unraveling in what's going on in Long COVID. And I think these fields can converge and we can enlighten one another."
More for Lipkin: "...there are biomarkers for ME/CFS. We have had a preliminary look at some patients with Long COVID and they seem to be consistent. It's not the sort of thing I would promote at this point [2-Day CPET...?]....this is a plea for those of you who would like to see these kinds of discoveries expedited, please do access the ME/CFS resources that we have. There are NIH funded centers who would eagerly partner to sort these as rapidly as we can."
From Dr. Levine:"I think the silver lining will be that finally we will find some recognition for ME that we've been seeking for years. We don't have a place at the table so to speak and so I'm hoping that this and other activist groups will help support and bring us more to the forefront so that we can bridge the gap and learn more about these complex diseases"
More from Levine: "there are some emerging biomarkers that our centers have determined to be reasonably reproducible and that separate people with ME from age and gendered matched normal people. As Ian referred to, particularly in the microbiome and certain cytokine abnormalities, we've definitely found differences within the group."