Thread by @IsabelRamirezRD

Speaker Vicky Whittemore from NIH, status of research : overview at NIH #mecfs and #LongCovid research

#NIH trans NIH #MECFS research institute - nih.gov/mecfs to sign up for alerts to watch quarterly briefings.

goals: foster communication between federal agencies on issues related to mecfs. funding for mecfs started to raise in 2016, there is a dip in 2022 because the 3 research centers not funded that year, expected to be funded in 2024

Phenotyping studies for #MECFS , #longcovid and gulf war veterans are undergoing.

Cornell mecfs collaborative research center has just been funded to look at the underlying mechanisms of #MECFS

Search #MECFS is a tool where researches can look for bio specimens that are available to be used for their research study.

#MECFS research: cell-cell interaction, metabolism, age, length of illness, proteome, cytokines, infection, sex as a biological variable, extracellular vesicles, acetyl-coA pathway, propionate, are just some of the areas of research stratification in current studies

Evaluating epidemiology and determinants of neurologic #longcovid comparative to #MECFS

An #MECFS research roadmap is being developed. Special thanks to Richard Simpson and Simon Carding for participating in the working group council.

21 individuals in the group focus on: nervous system, genetics, immune system, metabolism, circulatory system, physiology, chronic infection. Sign up for the webinar to get updates on where this groups are focusing in terms of research. the objective is to move into action

The working group's 2nd conference will take place December 11-13, 2023, this will include tragets for interventions and learning from #LongCovid

studies.recovercovid.org - as of may 26, 2023 recover observational studies have enrolled over 26k pts. Focus areas: viral persistence, autonomic dysfunction, cognitive dysfunction, exercise intolerance and fatigue, sleep disturbances.

The protocol is being reconsidered in regards to the exercise portion of the trial because of the outcry from patients. These issues are being reconsidered.

There is a meeting at the end of this month to come to a better definition of #LongCovid and hopefully use a standardize those definitions among agencies.