elle carnitine 🪳

A Bourgeois White Woman’s Disease The person with myalgic encephalomyelitis (ME) is a woman. She is frail, weak, confused, and impressionable, and at the same time, she is un...

What interests me here is not to rehearse this well-trodden ground on how the misogynistic construct of hysteria harms those it directly targets, namely bourgeois white women. Instead, I want to look at how it harms those it does not seem, on the
epistemologyoftheclinic.blogspot.com/2024/10/a-bo...

People who don’t include disability liberation in their understanding of social justice will never make sense to me.

Like what do you MEAN you oppose sexism, racism, and classism, but the minute the lived reality of that oppression starts showing up physically, all your energy just evaporates?

Historically underrepresented in clinical studies, LGBTQIA+ people face systemic barriers that perpetuate health inequities and hinder the advancement of medical knowledge tailored to their needs.

A Comment article in Nature Medicine argues that clinical research should recruit participants from LGBTQIA+ populations, which requires specific actions and policies to create affirming and welcoming environments. https://go.nature.com/3WILuQi 🧪

this is the logic of everyone supporting the assisted suicide / euthanasia bill: healthcare, social care and hospice care are indeed all abjectly bad—so let's force people who need them to die instead of improving care because £££

First speaker of this session: Dr Paula Muhr on 'it's all in your head'. LC is not FND but often comflated with it. Fnd is still associated what Freud used to call 'hysteria' and all the stuff re: secondary gain also comes from Freud. So, fnd isn't in people's heads, and neither is LC.

Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.

What contributes to our invisibility? 1) the unwillingness to register. From 2020/3 there were signals about lc. It took the dutch government 1,5 years to mention it. (long sars1 was known from 2003). But they refused registration. No facts, no meaningful discussion, no numbers to make us visible.

Remember: ‘liking’ a post has no effect on its visibility here (unlike on Twitter).

To help good or informative posts get seen by other people, you have you repost them.

This feels like a big part of why it can often feel so quite here.

Les consultations durent 20mins mais il prend le temps de parler plus longtemps s’il le faut

Have you tried contraceptives for stopping your period? i used to have this exact problem and that’s how i solved it. I’m aware it doesn’t work for everyone though

A photograph on a black background. It shows Nabka Day 2021 in Bay Ridge, Brooklyn. The author is in the center, with two other friends with Long COVID on the right. The late activist and nurse, Shatzi Weisberger, is to the left of Bitar. White text reads, “The Sick Times: Instead of supporting people with Long COVID, our government funds a genocide. By Jenna Laila Bitar.”

A photograph on a black background. It shows Nabka Day 2021 in Bay Ridge, Brooklyn. The author is in the center, with two other friends with Long COVID on the right. The late activist and nurse, Shatzi Weisberger, is to the left of Bitar. White text reads, “The Sick Times: Instead of supporting people with Long COVID, our government funds a genocide. By Jenna Laila Bitar.”

For our Colors of Long COVID series, supported by the Disability Visibility Project, Jenna Laila Bitar writes about being a Palestinian American with #LongCOVID during Israel’s horrific, ongoing genocide in Gaza. bit.ly/3CdQiWU

My point is that they can only be a treatment barometer if they are correlated with an independent measure of disease severity, and we need questionnaires to check that!

“But what could be driving immune dysfunction if not viral persistance?” “But why would some people get sick and not others if it was viral persistance and not person-specific immune dysfunction?” These are questions that need to be investigated, not inquiry terminating gotchas

I feel so frustrated when people proclaim the root cause couldn’t be anything other than viral persistance, or anything other than autoimmunity, or anything other than immune dysfunction. We simply don’t know yet. We know that all of these are involved and they all need pursuing

We can’t afford to put all our eggs in one basket re the causes of Long COVID. We need to investigate every evidence-backed hypothesis because nothing would be worse than pursuing just one (even if it’s the most plausible) and finding out decades down the line it was wrong

Since my episode with the wonderful @longcovidanswer has been released highlighting viral persistence as a major driver of some #LongCOVID pathology, I’ve been asked repeatedly, “what should we do about it?” - totally fair question. Here is my proposed roadmap: 1/

This is essential to be able to determine who should be given what intervention, since we know that it’s very unlikely everyone with LC will need the same intervention. So biomarker research is urgent and crucial. But biomarkers will not replace questionnaires

None of this is to say that biomarkers aren’t essential. Most crucially, we know that people w the same disease presentation respond differently to interventions; we currently have no way to predict how someone will respond to any given treatment. We need biomarkers for subtypes

Medicine is for us, its aim is to improve our lives. Unless we had a biomarker that perfectly correlated with all domains of health related quality of life (highly implausible), we’d still need questionnaires in addition to biomarkers

In HIV for instance, once your viral load is undetectable, doctors consider their job done. But many people whose viral load is undetectable still experience sometimes disabling fatigue and brain fog, among other symptoms. These aren’t recorded in studies that only use biomarkers

But sick people don’t only care about how long we’ll live, we also care about how well we’ll live. There are so many examples in medicine of fields where the very concept of quality of life is entirely absent.

Well, their biomarkers are supposed to correlate with time to death. (I say “supposed” because there are many cases where this was just assumed and it didn’t hold; e.g. findings that shrinking a tumour didn’t actually lead to living longer.)

Now to the second part of my argument: in other fields (such as cancer), there is a huge push from sick people to include questionnaires. Why, if they have biomarkers? What sense does that make?

To recap what I’ve said so far: the only way to check that biomarkers are a good measure of disease severity is to have an independent measure of disease severity, and in LC and ME, that requires using questionnaires. Hence, developing good questionnaires is essential and urgent

But we also need questionnaires that capture *all* the symptoms of Long COVID, including those that have nothing to do with ME, and their severity. This should be objective: “how far can you walk?” vs “do you feel slightly, moderately, or very disabled in your capacity to walk?”

But that doesn’t mean all questionnaires are bad. We urgently need good questionnaires that do capture the severity of LC, including the ME subtype. We have the FUNCAP which is brilliant at capturing functional capacity in those with PEM, and that is a treasure of a tool.

Now, the Chalder Fatigue Scale, or the fatigue subscales of PROMIS and FACIT (you can Google them if you haven’t seen me complain about them before!) are obviously bad. They can’t capture the reality of ME, nor that of non-ME LC which for instance might present as cardiovascular

But in Long COVID and in ME, that would obviously not be a good measure. Instead, we need to know what the life of people is like: are they having symptoms, how bad, how much do these symptoms affect their capacity to do things. In other words, we need *questionnaires*

So we need to make sure that our potential biomarker correlates with disease severity. And to do that, we need an independent measure of disease severity. In some fields like cancer and HIV/AIDS, they used time to death as this independent measure