Certain details have been asked to keep private which I will respect, but just sharing some high-level takeaways to this forum that are okay for public sight (for visibility and knowledge, and hopefully to give some degree of hope that these discussions continue to develop) that following the US Senate HELP Hearing in January on LC, where NIH was not present at, there was a Roundtable meeting. This meeting followed some weeks after with members of Congress, NIH staff, and members of the patient & research community to discuss concerns that were surfaced at this hearing. Also because the aspect of Congressional oversight has been a hot topic very recently with NIH, I felt it was apt to share given timing.
The meeting was held at the NIH and the NIH Director was present, as well as several Institute heads. Much like the US Senate HELP Hearing, this was described as an intense meeting with high engagement, spirited debate, moderation and a solution-oriented discussion.
Bertagnolli's 6 takeaway points from this Roundtable meeting:
1. We need more funding for Long COVID research and more clinical trials
2. Focus on addressing PEM
3. Explicitly named eliminating stigma around LC & ME
4. Improve patient engagement
5. Adjust grant review process to make sure reviewer feedback is adequately considered and applicants receive feedback
6. Make all data available to the broad research community quickly
Since this March meeting, some developments seem to be directly correlated to this meeting:
o RECOVER has made data easier to access now (
announcement here in April)
o The $515 million infusion seems to now be focusing on clinical trials (declared at NIH ACD last week)
o Senator Sanders released his proposal for Long COVID Moonshot in April. Hopeful that the release of the Bill will be more expansive and at minimum include comparator groups of ME, but unsure what will come of it.
o NIAID then asked PLRC to submit comments for NIAID 5-Year Strategic Plan, that
PLRC shared in May. If accepted, strategic plan would then include LC and IACC language as Institute priority in their strategic plan.
Hopefully Bertagnolli will continue to keep this at the forefront, which it sounds like she's an ally from those who know more than I and are closer. Also just sharing as there's been wonder if NIH prioritizes PEM after the Intramural Study & at least from the very top, unlocking that is a high priority (I know these are just words but sharing for sight). Also I think the community at times is more likely to stay engaged when we can sense any sort of momentum, and I'm hoping little by little progress keeps moving forward (and the community rightfully felt a lot of strong emotions after the Intramural Study and restoring any trust at NIH will take a series of actionable items indicating feedback is being taken seriously)
