This week in @thesicktimes, I wrote about Long Covid and blood donation. Based on what we currently know, experts told me the blood of people with Long Covid is not safe for donation.

thesicktimes.org/2024/05/14/sho… I began thinking about this story when the U.K.'s National Health Service (NHS) updated guidelines in 2022, deferring people with Long Covid from donating. I later learned many countries have life bans for ME and post-viral fatigue syndrome.

thesicktimes.org/2024/05/14/sho…

🚨NEW: After blocking public comment on their new guidance released today, the @CDC is now hiding critical comments from the public on X, many of them from disabled, immunocompromised, or #pwLongCovid. Studies & articles in opposition of the guidance were also hidden.





@cdc The @nihceal also hid critical comments from people with #LongCovid last summer and admitted they "inappropriately" censored people.

@CDC, why are you "inappropriately" censoring people?

coviddatadispatch.com/2023/08/20/the…

TW/ Death

I'm planning to begin reporting on deaths in the Long Covid community. If you've lost a loved one to the disease and you are at a place where you are ready to share their story, please reach out to me at miles@thesicktimes.org 🙏 There is no rush or definitive timeline - I want to report on this important story as ethically as I can. I welcome any resources, guidelines, or similar examples of how to cover this heavy topic as well. I do not want to intrude on or add to anyone's grief process.

THREAD 📣 Vito Russo's 1988 ACT UP speech "Why We Fight" and it's many parallels to the continuing COVID-19 pandemic currently causing 1k+ deaths p/week + mass disability #LongCovid #ME #POTS 1/ Russo delivered "Why We Fight" during an ACT UP Demonstration at the Department of Health and Human Services, D.C. on October 10, 1988.

actupny.org/documents/whfi…

"...It is time to rise up and stop the gaslighting, the rejection of the latest research and the experience of patients."

@r_prior on the fringe ideas being platformed about Long Covid and ME that go against the vast biomedical consensus.

openmindmag.org/articles/gasli… "One story, published in @newrepublic, manages to miss much of the scientific literature, erroneously arguing that these conditions are not biological diseases..."

For @PopSci, I reported on #LongCovid clinics, or "post-COVID care centers." Though these centers specialize in the disease, patients still face rejection, gaslighting, outdated (and harmful) therapies, as well as long lists of unanswered questions.

popsci.com/health/long-co… 1/ The first barrier to many of these clinics is the requirement of a positive test & referral. Many #pwLC were sick before tests were available & with new variants, tests aren't always accurate. Affording a PCP is also a privilege many don't have.

popsci.com/health/long-co…

A quick thread of THREADS 🤯 from experts, journalists, and advocacy groups who have spoken out against the inaccurate, biased, and harmful @NYMag /@intelligencer story on ME and Long Covid. 1/ First, @davidtuller1 responds and debunks the PACE trial here - which the author Jeff Wise uses as a cornerstone in his story - a topic that Tuller has been covering for years as a journalist and public health expert.

https://twitter.com/davidtuller1/status/1589195957865828352?s=20&t=rWUV4KkBiQmvLRolwUZPlQ

Today is day 123 of my #longcovid odyssey.

I wrote about my experience in an essay for @adventurevida and compared it to a thru-hike across the unknown. Some days I'm northbound, some days I'm southbound. Other days, I walk to hell and back 1/

adventure-journal.com/2020/08/living… Four months+ since coming down with symptoms, I experience daily headaches, overwhelming fatigue, wild heart palpitations, body aches, muscle twitching, & a slew of neurological symptoms including trouble reading, speaking, writing, & thinking. 2/