#NEISvoid inside baseball— The NIH team’s response to this (the Davenport et al comment) is awful. It’s here: nature.com 1/
"ME/CFS isn’t about doing less by choice. It’s about the body’s inability to recover. It’s time to shift the narrative from motivation to biology." Thank you @sunsopeningband.bsky.social et al for writing this new manuscript: nature.com
www.nature.com
Essentially they say they didn’t find physiological evidence people with ME/CFS fatigue faster than controls, but instead that pwME quit on tasks sooner, and they argue that’s what should be studied about ME—the will to make an effort, not the effects effort has on us. 2/ It completely disappears from the conversation how sick pwME get from exertion, and seems to imply the pathology in ME/CFS is not exerting enough. 3/ Especially to have Nath (often thought of as an ME ally) promoting this response really frightens me for what it says about NIH’s perspective on our disease, and what would happen if we did ever succeed in getting significant ME funding allocated there. 4/ NIH investing in this idea on a large scale could end up installing a generation of academics whose careers depend on promoting it, and repeat the nightmare the UK has dealt with due to the BPS squad. 5/ Obviously we’re a far cry from getting that money anytime soon but insofar as it’s a longstanding advocacy goal for the community, I think we really need to talk more about what strings need to be attached to make sure money does us good and not harm. 6/ I had thought directing money to the NIH ME/CFS Research Roadmap was a p good solution, but it does have a serious shortcoming in how little attn it gives PEM. Comments like today’s from Walitt, Nath, et al make me worry the failure to set out clear terms for PEM research may be a damning flaw. 7/ Here’s some of what I wrote when NIH sought public comment on the Roadmap in March 2024. 8/
Tldr: “At this point, NIH is completely botching the study of PEM, and therefore the study of ME, since PEM is its cardinal symptom and dominates the lives of sufferers. The Roadmap will be a failure if this is not completely turned around.” Eighteen months later, I’m only even more concerned. 9/ Meanwhile: Evidently Anthony Komaroff helped select patients for the trial at issue; then was allowed to peer review the paper that came out of the trial (!); and THEN was allowed to peer review the Davenport et al critique of that paper!! Just in case you still had faith in peer review 🙃 10/