Miles W. Griffis Profile picture
Apr 15 18 tweets 7 min read Twitter logo Read on Twitter
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 A black and white photo of ...
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…
2/ "My family thinks two things about my [AIDS diagnosis.] One, they think I'm going to die, & two, they think that my government is doing absolutely everything in their power to stop that & they're wrong on both counts."

statnews.com/2022/03/29/nih…
3/ "If I'm dying from anything, I'm dying from racism."

cnn.com/2022/10/27/hea…
4/ "If I'm dying from anything, it's from indifference and red tape, because these are the things that are preventing an end to this crisis...If I'm dying from anything, I'm dying from the President of the United States."

cnbc.com/2023/03/31/med…
5/ "Living w/ AIDS in this country is like living in the twilight zone...[Everyone is] walking the streets as though we weren't living through some sort of nightmare."

them.us/story/queer-sp…
6/ "It's worse than a war, because during a war people are united in a shared experience. This war has not united us, it's divided us. It's separated those of us with AIDS and those of us who fight for people with AIDS from the rest of the population."

pestemag.com/featured-posts…
7/ "The media tells them that they don't have to care, because the people who really matter are not in danger."

thelancet.com/journals/lance…
8/ "trying to figure out how to get hold of the latest experimental drug, and which dose to take it... how are you going to pay for it? And where are you going to get it? Because it isn't happening to them, so they don't give a shit."

cnbc.com/2022/12/01/lon…
9/ "And they don't spend their waking hours going from hospital room to hospital room, and watching the people that they love die slowly -- of neglect and bigotry, because it isn't happening to them and they don't have to give a shit."

theguardian.com/world/2023/apr…
10/ "[Why is] the only television movie ever produced by a major network in this country about the impact of this disease is not about the impact of this disease on the man who has AIDS, but of the impact of AIDS on his white, straight, nuclear family?"

pestemag.com/featured-posts…
11/ "All the newspapers I read tell me that IV drug users and homosexuals still account for the overwhelming majority of cases, and a majority of those people at risk."

accessibility.com/blog/cdc-direc…
12/ "It is more than a horror story, exploited by the tabloids."

niemanreports.org/articles/three…
13/ "When future generations ask what we did in this crisis, we're going to have to tell them that we were out here today. And we have to leave the legacy to those generations of people who will come after us."

thenation.com/article/societ…
14/ "We're so busy putting out fires right now, that we don't have the time to talk to each other and strategize and plan for the next wave, and the next day, and next month and the next week and the next year."

npr.org/sections/healt…
15/ "After we kick the shit out of this disease, we're all going to be alive to kick the shit out of this system, so that this never happens again."

bloomberg.com/news/articles/…
16/ Russo's above ending quote is heart-wrenching to read as the world counts ~18 million excess Covid deaths and at least 65 million people with #LongCovid. Russo died of AIDS-related complications in 1990. Keith Haring's "Ignora...
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More from @mileswgriffis

Feb 2
"...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..."
"Similarly, a recent article in @NYMag...highlights a group of psychiatrists pushing an outdated, often harmful form of treatment called graded exercise therapy even as the tide of science turns against them."
Read 7 tweets
Dec 5, 2022
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…
2/ If patients clear these barriers, the usually wait months, sometimes even a year+ to be seen. With ~400 clinics in the U.S. and over 16 million #pwLC, thats about 40,000 patients per clinic if all seek care.

Many don't bc of distance, cost, & more

sciencenews.org/article/long-c…
Read 11 tweets
Nov 9, 2022
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.

2/ In this next thread, @Purtinolab writes why graded exercise therapy/CBT are not valid treatments for many patients with Long Covid and ME who experience post exertional malaise, while mentioning some of the concerning biological findings in patients.

Read 12 tweets
Aug 19, 2020
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/
While I am able to do light exercise, I am averse to my old training, running, workouts, and recreating. My heart race increases dramatically even upon light cardio and I experience SOB as If I’m hiking high above treeline. 3/
Read 10 tweets

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