Thread by @Dysautonomia

.@Dysautonomia President Lauren Stiles and other patient advocates are quoted in this article exploring what the @NIH has done with $1.15B in US taxpayer funds allocated to #LongCOVID research. 1/🧵

muckrock.com/news/archives/…

Dysautonomia International advocates serve on several RECOVER committees & have been fighting hard to get the NIH to spend these funds on research that is urgently needed to develop more effective treatments for people with #LongCOVID (a majority of whom have #dysautonomia). 2/🧵

While there are some great people involved with RECOVER, RECOVER as a whole has failed to deliver & is hampered by excessive bureaucracy, lack of accountability for decision making, and NIH's failure to put experienced post-viral illness researchers in leadership roles. 3/🧵

We have been on multiple calls to vote on autonomic testing since 2021. Each committee recommends it, the vote is ignored by leadership, autonomic testing is not implemented, and as a result, RECOVER failed to capture any meaningful data on autonomic dysfunction to date. 4/🧵

Why is that a problem? Because research outside of RECOVER shows that about 70% of Long COVID patients have dysautonomia, and pre-COVID research shows that dysautonomia drives fatigue, brain fog, exercise intolerance, immune dysfunction, sleep problems and more. 5/🧵

We need RECOVER to implement the full COMPASS-31 and 10 min active stand test on ALL RECOVER subjects NOW. We need complete autonomic function testing, plus catecholamines and skin biopsy, in a large study of controls and PASC patients NOW. 6/🧵

We need clinical trials exploring treatments to improve autonomic function NOW: IVIG, PLEX, pulse steroids, other immune modulators, ivabradine, vagus nerve stim, Mestinon, etc. There are SO many options, but patients are being denied access because there are no trials. 7/🧵

If RECOVER isn't going to take timely action, we need other sources of research funding. Join us in calling on Congress & @NIH to fund $50M in #POTS research. Take action at bit.ly/FundPOTS The POTS population has doubled since 2020 as a result of #LongCOVID. end/🧵