1) On March 17 there was ME/CFS advocacy call at the NIH. The audio recording and transcript have been made available here: https://www.nih.gov/research-training/medical-research-initiatives/mecfs/nih-me/cfs-advocacy-call-march-17-2020

I thought it was interesting. I’ve made some highlights in the tweets below

2) Vicky Whittmore of the NIH said they were planning a workshop this spring to discuss clinical outcome measures and clinical trials in ME/CFS. She also said that they are partnering with the CDC to put an Interagency Working Group for ME/CFS in place.

3) Leonard Jason talked about his prevalence study of ME/CFS in youth and said his team was in the process of recalling the 44,500 phone numbers that were reached for follow-up study.

4) Jason said he had permission to follow-up on the 42 young people with ME/CFS that were identified in the prevalence study, but that he didn’t have funding for that yet. He also said to have blood and slide samples in deep storage for this group.

5) Terri Wilder of ME Action reminded that activists with ME interrupted Dr Francis Collins’ opening statement for the House Appropriations LHHS Subcommittee and that Collins didn’t use this opportunity to talk about ME/CFS despite permission to do so from the subcommittee Chair.

6) Wilder ( @WildNycgirl) said: “This was a huge missed opportunity to educate and raise awareness about this disease […] Why didn’t Dr Collins include our disease in his opening remarks to the Committee? He named many other diseases and could have certainly named ours.”

7) Dr. Walter Koroshetz, Director of NINDS, responded that Collins has pushed the institutes to move much faster and more aggressively into ME/CFS research, saying: “he is your champion; no question about it.”

8) Koroshetz added: “I think we are on board with the request that ME/CFS funding be much more robust. We don’t think that at the current level it’s – it would almost take a miracle to solve ME/CFS….

9) Koroshetz: “… We need folks like Dr. Jason and probably maybe 500-to-1000 more to dedicate their careers to ME/CFS”

10) Claudia Carrera also of ME Action called in later during the hour. She said that the NIH should expand the Collaborative Research Center Network and noted that when adjusted for inflation, current ME/CFS funding was comparable (only a little bit higher) to that in 1995.

11) Carrera ( @claudiamcarrera) said: “you have not doubled ME efforts and resources at NIH. You have reinstated funding that was cut from ME research in the early 2000s, and we are barely getting more NIH resources now than we were 25 years ago”

12) Koroshetz said those were cogent arguments but responded: ”Our problem at the current time is that the number of applications is terribly, terribly small. So, the goal, if we’re going to change the playing field, we need more people to work on ME/CFS."

13) Koroshetz added that “grants that come in on ME/CFS actually get funded at a rate that’s either the same or better than the other grants that we see.” And he emphasized that “three times a year, anyone can write an NIH grant.”

14) Earlier during the hour a patient named Whitney called in, said her ME was triggered by H1N1 swine flu in 2009 and asked how the NIH would study links between ME and any potential post-viral fatigue syndromes that we could see resulting from coronavirus.

15) Joseph Breen responded that currently, therapeutics and vaccine studies are top priority because of the crisis. Jason mentioned a comprehensive survey by Lisa Petrison that might be helpful to record outcomes.

16) Later Jason emphasized that “this is a time of unequaled opportunities for researchers to get involved.” He noted that “what’s happening right now is such unique opportunity to basically find a cohort and to sort of see the manifestation of the immune system”