#pwME#pwLC Big weeks in LC/ME world with @decodemestudy results on #MECFS; #KeystoneSymposia on #LongCOVID! Who would you like to see @jonstewart interview on @weeklyshowpodcast to highlight these historic events? 👀 Name/tag them & their institutions below👇 RT for reach! 🙏
A patient who created a popular sheet on how to deal with somebody in postexertional malaise (PEM) has adapted it for hospital staff (repeat)
#MEcfs#LongCovid
"cfs_care showed:
After inpatient rehabilitation, a 44% worsening of symptoms,
only a 13% improvement in the Bell Score. Furthermore, no effects on fatigue, pain, or cognition.
This is not simply a null result; the data show:
Rehabilitation for PEM/MECFS is a risk."
Severe #MECFS can often feel like your body is a war zone. I can’t imagine living with it and being in a war zone aswell - with bombs falling outside your home. I’ve just donated to help Daryna escape from Ukraine to Germany.
Calling all New Yorkers! If you have #LongCOVID and would like to be a part of this exciting trial exploring low dose rapamycin as a potential therapy, please reach out to the @CoRESinai team. This trial will deepen our understanding of immune dysfunction in LongCOVID. Plz help!
Still think this is one of the most profound #LongCovid & #MECFS studies I’ve seen. Potential for blood biomarker..
"Overall, skeletal muscle degeneration in these conditions follows a multi-phasic progression from compensatory adaptation to structural and metabolic collapse”
Rly hope we can get next steps funded to test lipid metabolism in immune cells from ppl w/ ME/CFS or Long COVID and test immune function at same time.
If you haven't seen our new findings in this space 👇
TLDR: ⬆️lipids in B cell derived lines from pwME
https://t.co/RSd8jZM7Un
@jonstewart we heard you recently got caught with your 😷 down 👀…this doesn’t sound like the same guy in the clip below👇. Still time to do better & explain how #GreatestMEdicalScandal got us here. Check out https://t.co/SWjebYYjPP & some ideas for guests for @weeklyshowpod 🧵
Yup. And the best way to do that is to cover the #GreatestMEdicalScandal! Helpful list of great potential experts in this thread. #OneOfTheTwo
https://t.co/B0AtyUlkGs
"Never doubt that a small group of thoughtful committed citizens can change the world. In fact, it's the only thing that ever has." - Margaret Mead #oneofthetwo
I keep coming back to how forgotten “the vulnerable” are. We had* this whole huge pandemic that everyone acknowledged, now people act like they can’t fathom why anyone would mask? Some people have more known risk factors. How is that just fucking forgotten?
#OneOfTheTwo
@jonstewart we heard you recently got caught with your 😷 down 👀…this doesn’t sound like the same guy in the clip below👇. Still time to do better & explain how #GreatestMEdicalScandal got us here. Check out https://t.co/SWjebYYjPP & some ideas for guests for @weeklyshowpod 🧵
“We are told by leaders that we are the future. But when it comes to the ongoing pandemic, our present is being stolen right in front of our eyes.”
Incredible speech by Violet Affleck who warned about COVID & Long Covid, & advocated for masks & clean air at the UN today!