People at Demystifying Long COVID keep bringing up the fact that we don't have biomarkers as a problem for designing clinical trials. Biomarkers are absolutely necessary for subtyping. But GOOD patient-reported outcome measures are crucial

https://x.com/elle_carnitine/status/1804113517584290204

Sometimes, biomarkers don't correlate with the things that actually matter. For instance, there are cases in cancer research where tumour size doesn't correlate with increased life-span, such that showing a drug shrinks tumours is not informative

The negative results for the phase II BC007 trial are disappointing but not surprising, given the outcome measures they used. What is an outcome measure, what was the problem with this trial's design, and what does that mean for our future advocacy?

https://twitter.com/realfrankbecker/status/1856644776080150619

A randomised controlled trial works as follows: we measure how well people are before treatment, and then we give one group the treatment, and another group a placebo. Then, we measure how well each group is, and we compare them.

Some thoughts on the question of how to engage with people who don’t wear masks or take COVID infection control measures, now that the discourse has long blown over and things are a bit more relaxed

🧵 The first thing to acknowledge is that COVID infections are extremely dangerous to many disabled and/or sick people. Many of us are at risk of death or severe permanent deterioration from a COVID infection. The stakes for us are literally our baselines and our survival

Camilla has been talking about COVID to a childhood friend who’s a GP for several months. The GP has:
- added FFP2s and air purifiers to her waiting room and consultation room
- added a poster asking people with symptoms to mask
- started masking with her at-risk patients
🧵 - She’s read up on Long COVID and ME, and does the best she can to screen for PEM when people complain about fatigue
- She’s recommending no exercise immediately after COVID
- She’s looking into the documentation Cam sent her on meds that help (LDN, LDA, POTS meds, MCAS meds)

It used to drive me up the wall when friends and family would message me saying they were doing stuff to “keep my spirit alive” without doing anything to actually keep me alive, and while joyfully participating in the pandemic that will likely cause my death I don’t know what explains the fact that I don’t get upset anymore. Has an extra year of this hell lowered my standards so that now when someone from before remembers I exist I’m ecstatic? Have my emotions been dulled by illness? Have I become better at compartmentalising?

Many have tried to theorise doctors not listening to their patients as a from of 'epistemic injustice'. In my new blog post, I explain what that means, and why I'm not convinced

epistemologyoftheclinic.blogspot.com/2024/09/the-li…
The basic idea of epistemic injustice is that people are harmed "in their capacity as a knower": either because they are disbelieved as a result of negative stereotypes, or because the concepts made available to them cannot allow them to articulate their experience

I’m reading that the Japanese govt not only lied about the safety of the food grown around Fukushima after the nuclear accident, but actually started a scheme called Eat to Support, where eating contaminated food was framed as solidarity with the disaster victims The people who were concerned about contamination were mostly women, because it’s mostly women who buy and prepare food. They were portrayed in the mainstream media as hysterical, as spreading harmful and unscientific rumours, and they were called “nō-mama” (radiation brain mums)

Medical students are asked their opinions on ME: a thread. "people who've got erm ... IBS have erm specially sensitised brains basically [...] so they have symptoms even though nothing's wrong"

I can’t stop crying. All I want is for someone to check if my crushing chest pain is a heart attack, without belittling or harming me. If society cared about keeping people like me alive, we’d have doctors who can come and draw my blood and take an ECG in bed But the sicker you get with ME, the less you can access healthcare, the less likely you are to stay alive. To be so fucking desperate for competent healthcare and get nothing but scorn and abuse in return makes me want to die

In an attempt to normalise the abandonment and/or abuse of severely ill people, actually good carers are painted as either controlling of the people they care for or controlled by them. In no case can a person choose to care for another out of solidarity and love The number of people (esp HCWs) who have said to Cam that she should abandon me to my death “for her mental health”, and the number of people (esp HCWs) who have suggested Cam is keeping me sick by caring for me

I was pressured to unmask by a family member in a high-risk situation, got infected by a family friend who coughed on me, became unable to walk or read, never once received so much as a message from either of the people above, but if I’m angry at anyone but the govt I’m [slur] Long-term close friends have literally ghosted me, people I depend on for survival have lied about the Covid precautions they take and refused to believe me about my illness, people I loved have abandoned me in the name of the new normal

Several ppl familiar w or involved in HIV/AIDS activism have been saying that disabled & immunocompromised ppl’s anger surrounding Covid is analogous to shaming people with HIV or AIDS for their illness

This thread is a friendly attempt to explain why the comparison doesn’t hold The blaming and shaming of ppl w HIV and/or AIDS has been orchestrated by the state in an attempt to relinquish responsibility for the crisis and eliminate queer forms of life. It served to stigmatise risk reduction measures like condoms, testing, and later PrEP

The discourse ableists are so disconnected from reality. Speaking only for myself, I am so sick I haven’t been able to sit or stand for over a year, there is one person taking care of me, and we have been living in complete isolation for years because a reinfection could kill me At some points I was too sick to speak for months on end, so I was literally alone in the dark in horrific suffering all the time, and she had exactly zero people to speak to or be with. All I did was suffer and all she did when she wasn’t caring for me was cry

Let me tell you the story of a small clinical trial, which tested a combination of AZT and a drug called ddC, for HIV/AIDS in 1990. 🧵 When the trial took place in 1990, the only drug that was approved for HIV/AIDS in the US was AZT. AZT seemed to slow disease progression, but it was highly toxic and wholly insufficient as a treatment. People were dying en masse

One of the most misunderstood aspects of severe Myalgic Encephalomyelitis and severe Long Covid is that people are often too sick to go to hospital.

How could this be? What does that even mean? A thread for the curious 🧵 The characteristic feature of these diseases is that they get worse (i.e. people get sicker) with exertion. That’s not just physical exertion, but any activity that requires energy expenditure: thinking, processing speech, light, and sound, fighting infections, etc.

A lot of the people around me (as a bourgeois white person and former academic) have been into running, and it’s always seemed to me like there was a weird ideological thing going on that I couldn’t quite pinpoint. This thread (in French) raises some fascinating points

https://twitter.com/coachouicoachv2/status/1788610688660734213

The first thing it notes is that unlike team sports or indeed most activities, running can be done alone on one’s own schedule. When you run you don’t need to depend on anyone else

Bourgeois value number one: “independence” (in scare quotes bc ofc it’s illusory)

“So-called pelvic pain” I’m finding out that some doctors don’t believe in the pelvis

The NICE guidelines state that ppl with #severeME may need an extremely low level of stimulation, someone to communicate for them, and a feeding tube. Yet Millie is detained in an excruciating environment, forced to communicate herself, and denied a feeding tube #BringMillieHome Why are your hospitals not following the NICE guidelines, @NHSuk? Why is Millie being denied the feeding tube that the guidelines clearly state it is best practice to give her, because she has difficulty chewing and swallowing?

When people point to parallels between CDC abandonment of people sucesptible to disability and death from HIV/AIDS and from Covid & Long Covid, some abled queers will say that the situation is profoundly different (read: much less bad) because the former was fulled by queerphobia There is a lot that’s very different between the two epidemics, and indeed institutional and systemic covid denialism isn’t fuelled by queerphobia. But it is fuelled by ableism, and the overall structure of the ideology behind both is similar: “who cares if *they* die”

Covid denialism in the global north has been fuelled by the neo-colonial eradication of most infectious diseases in the imperial core and their attendant maintenance in the global south, which has cemented the association of whiteness with freedom from serious infectious disease If an infectious disease starts to spread in the global north, it must be negated as not really a disease in order to maintain the white supremacist idea that the diseases perpetuated in the global south by colonialism are actually signs of the south’s inferiority

I learnt so much from Vicky Osterweil in 2020, and I saw she did an interview about the refusal to forget or deny the various stages of the pandemic. It’s the first time someone I admired from the before times has remained anti-covid and I can’t tell you what it means She talks so well of what 2020 was like for those of us on the left, the incredible feelings of hope around the George Floyd uprisings, the burning of the third precinct, the dissolution of the Minnesota police dpt