In the USA #MEAction and Body Politic are holding Millions Missing 2023 at the Washington Monument on the National Mall in Washington, DC on May 12th. An art installation and live press conference are planned.
@LizEllisPhD there's also an implication that #LongCovid is an effect of severe infection, rather than mild — with the mention of ICU at the start. Didn't like that.
All the talk of self-management — the same answer that's been provided to #dysautonomia and #MECFS patients for years — only serves to show how there is little to no other support.
(hashtags because I misspelled dysautonomia initially)
@jane_eyrie I was diagnosed with #MECFS around 2006 and it was only by elimination of other causes. I didn't have any severe infection at the start. What was severe was the effect it had on my health, so while I haven't had #COVID, it looks like #LongCovid shares quite a few of the symptoms.
I was fortunate to have the opportunity to make lifestyle and career changes and have found that WFH has helped me manage my energy levels and wider health effects. @LizEllisPhD
@jane_eyrie I had hoped that given the scope of #COVID, #LongCovid would have been afforded better resources and research than #MECFS, which may have then been, at least in some cases applicable to sufferers of that too. @LizEllisPhD
Well I had a feeling this stretch of days was too good to be true. The #longcovid face and ear flushness is back with a vengeance. My face feels like it's on fire from the inside out. 🥵
"The webinar will include updates from NIH & a scientific presentation by Avik Roy, PhD, and Gunnar Gottschalk, PhD, investigators at Simmaron Research and University of Wisconsin - Milwaukee."
Since publishing the paper, a lot of #pwME & #LongCovid wanted to see if the disease mechanism we proposed held water & started testing their own lactate levels. Many found that they indeed had high/extremely high lactate levels (>2mmol/L).
#Introduction for my #Calckey account. See also @jules where I've been on #Mastodon for a few months and @jules@bookwyrm.social (weirdly they allow a . in the username despite it screwing up the tagging function) :bunhdthink:
I'm here for shiny new objects and slowly getting more into #Fedi stuff, obvs. Not a techy but with a layperson's interest in using new media, including socials. Also here for cuteness and fluffy stuff. Lots of time to watch #TV and #movies and read #novels (esp #SFF) because I'm sick with #longCOVID (#fatigue#PEM#BrainFog). 😷
Unlike many of you, I'm old! In my 50s, grew up with rotary phones and big chonky televisions, got cable when I was in highschool, email and dial-up internet in grad school. #Punk, #rock, #reggae, #soul, #r&b, those are my thing in music. I'm from the US but lived in Japan, Germany, and now Norway, so not all that American in some ways (still very much so in other ways). 🇺🇸 🇯🇵 🇩🇪 🇳🇴
#LongCOVID patients are walking out of studies because doctors are refusing to wear a mask. All patients have the right to access healthcare safely. Healthcare workers have the responsibility to do no harm.
If confirmed, this would be such a grave scientific and ethical violation. It’s changing study conditions midway through, putting participants at risk, and doing so in a way that is singularly disrespectful of their reasons for participating.
New:
Female reproductive health impacts of #LongCOVID and associated illnesses including ME/#CFS, #POTS, and connective tissue disorders: a literature review
"As it stands, 11 percent of adults who’ve had COVID are currently experiencing symptoms that have lasted for at least three months, according to data collected by the Census Bureau and the CDC through the national Household Pulse Survey. That equates to more than 15 million long-haulers, or 6 percent of the U.S. adult population."
On May 12–the day after the US Public Health Emergency will lapse—#MEAction & #BodyPolitic are holding a protest at the Washington Monument in DC to demand action on #LongCovid#MECFS & related diseases.
Inspired especially by the January #NichtGenesen protest in Germany, it will have rows of cots w/pillowcases decorated by patients & allies.
#pwME and #pwLC have started sharing the pillowcases they’re sending to the #MillionsMissing protest on May 12, the day after the #Covid Public Health Emergency ends in the US. These will be part of an #art installation of rows of empty cots at the Washington Monument.
I was not prepared for how strongly this would evoke the #AIDS quilt.