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

One of the common responses to disabled people saying they sometimes rely on food delivery to feed themselves is “if you’re actually that sick you need more medical care”

This encodes several ableist points:
1) disbelief of disabled people (*if* you’re *really* disabled) 2) assumption that we’re not actually constantly fighting for more support, and that food delivery isn’t the best we can do *given* our abandonment by state and community
3) insinuation (or sometimes outright assertion) that disabled people should be instituonalised

Given the fact that the notion of hysteria still pervades our culture and health institutions, I think we should hold back from talking about stress when we talk about the social determinants of health, until we have a good sense of how psychosomatic ideology operates I see so many people saying “I was in flight or flight all the time as a child and now I have cancer/MS/cushing’s”, which their doctors have often told them are causally linked. Except we can’t establish causality just like that, we need well-designed systematic studies

I’ve witnessed it several times: someone becomes seriously disabled and the people around them start to consider that person “fucked” or “ruined”, like they’ve entered a new category of non-human—even their suffering is couched in terms of what it does to others I’ve been thinking a lot about why some people are opposed to people like me (extremely sick from covid with no end in sight) saying covid “ruined our lives”. In our ableist context, it seems like we’re saying that we’re “fucked”, or beyond the threshold of what makes one matter

To follow up on this: at the start of the pandemic, my colleagues who were very worried about “trust in science” would admit that the public health measures were in many ways nonsensical, and failed to reflect what was known about covid 1/

https://twitter.com/elle_carnitine/status/1768274280284869109

For instance, where I worked, students had to wear masks in hallways but not classrooms. Cloth masks were deemed sufficient protection. Air quality was measured w CO2 detectors but the message was still to be 1.5m apart and to wash hands. Etc. 2/

In my latest blog post, I analyse the response that psychiatrists give when we resist the psychologisation of our physical illnesses: that we are acting out of “prejudice” against mental illness. 1/

epistemologyoftheclinic.blogspot.com/2024/03/sanism…






I explain that, not only is our resistance to psychologisation rooted in things completely other than sanism, but unlike the psychiatrists who are responsible for much of the perpetuation and justification sanism, we are likely to be engaged in fighting it 2/

I’m very slowly reading this wonderful paper by @voxjohsu, with thanks to @Naomi_D_Harvey for pointing me to it! “Patients with unexplained symptoms are simultaneously disabled enough to be untrustworthy and not disabled enough to be ‘really’ sick”

Rob Phair presented an update about the itaconate shunt hypothesis for ME. A quick breakdown and overview 👇 Studies of the oxygen consumption of cells confirm that, in ME, some but not all cells are sick. Phair estimates the proportion of sick cells to be between 9% and 45%, corresponding to illness severity

I’ve been thinking about saviour-doctor ideology and how it exists in the minds of people. Almost everyone I knew even before getting sick would have expected a doctor to be mostly useless at best, actively bad at worse, if they had a medical problem Yet at the same time, they’d still have believed that even though a specific doctor would be unlikely to help them, doctors in general are competent at improving their patients’ health

After my mother gave me a massive permanent baseline decrease, endangered my relationship with the one doctor on who my survival depends, and didn’t send me a single text for months, she called my illness “chronic fatigue syndrome” and that did it: I officially went no contact The amount of hatred I feel when I think about the fact that without her abuse, I’d probably be able to sit up right now, maybe even walk a few steps to the bathroom. That she made me so sick I could literally not touch my face for months

A paper was published last week in the Lancet Rheumatology, reporting the results of an RCT showing that LDN is not more effective than placebo for fibromyalgia

A few highlights from the paper, that might bear on LDN trials for ME such as the LIFT trial

thelancet.com/journals/lanrh… Firstly, their results. They show that LDN doesn’t have a statistically significant effect on pain (the primary outcome). It does however have an effect on memory—something the authors say should be investigated further. This could be relevant for cognitive symptoms in ME

According to the CDC, one cannot have ME if one: has cancer, has bipolar disorder, has an addiction, or is fat

“Active medical conditions” are exclusionary criteria but that apparently does not include fibromyalgia, anxiety disorder, or chronic Lyme

cdc.gov/me-cfs/healthc…
It’s actually really interesting that they didn’t just divide physical illnesses into real and fake, but mental illnesses too. Only psychotic or melancholic depression is real. Schizophrenia and anorexia are real but anxiety is not.

There is a new questionnaire to evaluate the functional capacity of people with ME: the FUNCAP questionnaire.

The OMF are going to use it in their upcoming LIFT trial (for Mestinon and LDN), as one of the ways to measure drug efficacy. And, it’s fantastic!

A thread 🧵 The authors of this questionnaire, Sommerfelt, Schei, Seton, and Carding, explain how they designed it in the preprint below—which I’ll summarise in this thread.

(posted online on 29th September 2023)

(supplementary material)preprints.org/manuscript/202…
preprints.org/manuscript/202…

It’s tempting to think that if the reasons people invoke to malign us, abandon us, and refuse us adequate treatment didn’t hold (if there was a single perfectly specific and sensitive biomarker, if “direct”death from ME was common, if it affected men and women equally) That then we’d get the recognition, healthcare, support, and treatment we’re desperate for. But there’s already overwhelming evidence that our disease has an organic basis, a lot of knowledge about different disease pathways, several good biomarkers