Yann (ME/LC)

Rates of death and disability from any virus are irrelevant if they are preventable.

Any debate about percentages that does not first accept the need to prevent are just debates about how many people to allow to die and suffer so existing societal norms can remain mostly undisturbed.

The mass suffering created and amplified by psychosomatic ideology is absolutely criminal.

None of this has to happen, it's all a choice. No one is responsible or accountable for any of this filth.

And all for complete bullshit fantasies.

Some documentation of this problem here

s4me.info/threads/the-...

Are we seeing a renewed attempt to erase #ME from the all NHS systems? Has a secret decree gone out? I’m seeing more and more reports from pwME about abuse in hospitals and from specialists. The feeble DHSC plan, the disregard of NICE guidelines, endless FND diagnoses from neuros. It’s all downhill.

1) 🧵Been looking at cytokines; small signalling molecules of the immune system.

Conclusion: lots of ME/CFS studies on this but inconsistent results. There doesn't seem to be an inflammatory cytokine response (in the blood).

Most consistently elevated cytokine was TGF-beta.

Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation.

The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?

CW Edited clip from an ORF report on the death of Samuel by assisted suicide.

Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.

Calling pwME in the UK- please fill out this survey if you haven't yet! I'll be using data from this survey to better understand at what ages people develop ME and from what types of triggers. Thanks to everyone who has taken part so far!

Over the last months and particularly one week Paula deteriorated very quickly. Talking became harder ...and Paula loved to talk.Feeding more difficult. Eating tiring needing longer breaks between each teaspoon. It took 3 hours to finish a small bowel of puree. We stopped watching short funny shows together. Forced into a bent over position, no longer getting to a window. She had loved standing with support briefly at the window, smelling fresh air, watching Hurley play in the garden.

Learned of another death of a friend with ME/CFS, this time someone I’d known for six years.

Very grateful to all of you who support work to relieve this terrible suffering.

Did they control for opiod and Naltrexone use?

I’m now picturing Morbo and his giant forehead doing indie rock.

Thanks this will keep my mind happily occupied ahaha.

Apparently Wessely threatening to sue people writing on ME/CFS.

I imagine this is the tip of the iceberg.
I hope people who this happens to come out.

Because this is exactly the kind of behind the scenes stuff we know happens but are difficult to gather evidence on.

Please use alt text on photos 😊

Exactly. If we start defining what is science by “who says it” (credentials) we’ve essentially turned science into a hierarchical system of narrative making.

“Proper” Science should be distinguished based on methods and evidence.

Science is a method. Not an institution.

Exactly. If we start defining what is science by “who says it” (credentials) we’ve essentially turned science into a hierarchical system of narrative making.

“Proper” Science should be distinguished based on methods and evidence.

Science is a method. Not an institution.

Personally I doubt autoantibodies are relevent and think if dara works its likely something more subtle immune modulation or similar but just curious theoretically.

Do you think there’s a theoretical possibility both C20 and C38 Killing on their own would be useless if both Memory B-Cells and LLP B-Cells are harmful. But a “double therapy” to be useful.

Or its very unlikely since in this case we would probably see visible marginal effects from Ritux/Dara.

I think they often fail to take into account PEM.

As in.

I can do task A fine on a good day I go to the study.

But task A gives me PEM and my cognition gets worse for a week after.

(Not my case just a hypothetical example).

SVP utiliser l’alt texte sur les photos pour l’accessibilité merci

Docs,
How many patients have you misdiagnosed?
Trick question. You'll never know.
⚡ #MedSky #NEISvoid #eds #pots #pwme

I think the effects would be much larger if they used pwSevereME in some of these.

But obviously these kinds of tests trigger PEM for pwSevereME.

I agree.
But also I definitely think 5 minute appointments structurally encourages this behaviour.

Obviously lengthening appointments won’t magically fix something that’s deeply embedded though.

Oh don’t worry I know my way around LLMs. I personally try to stick to FOSS Locally hosted or E2EE.

I was just commenting on an interesting pattern I noticed on Gemini.

I’ve noticed Google’s Gemini LLM often refuses to answer if you mention having a health condition or disability.

Ask the same question without that context and it tends to answer.

An example of how LLMs and “LLM moderation” can create inequities, as they come to be increasingly relied on.

Half the actual “experts” on Long COVID still believe its some homogenous condition and not an umbrella term. Somehow…

ME Protest planned in Marseille (France)

“I am still bedbound now, still unable to talk, or listen to music, or watch TV. But I will do more when able to, this is a natural instinct or process and needs no intrusive input from others. It happens whenever people get over a cold or flu.”
- Alem

Louder for the psychologisers at the back!

Graphic reads: "Who have we lost this week?" should never be a prompt in anyone's group chat (candle emoji, blue heart emoji) Yet it is for ME and LC patients.

Graphic reads: Yes, we are losing a friend or acquaintance each week. Sometimes, two or three. And as the clock ticks, we either wonder if it will be us or a friend who is struggling with their immune system...

Graphic reads: There are terms coined by people when ethnicities are being wiped out. I can't write the word here. What do we call this? A medical hOmO cide / f3m3cide / 3thnOc1de? This is absolutely the equivalent of a g3no for the ME community. We have watched as our friends died each week, helplessly, due to medical negligence and harm.

1/2 "WHO HAVE WE LOST THIS WEEK? SHOULD NEVER BE A PROMPT IN ANYONE'S GROUP CHAT OR A POINT OF CONVERSATION!

Yes, we are losing a friend or acquaintance each week. Sometimes, two or three.

And as the clock ticks, we wonder if it will be us or a friend who is struggling with their immune system...

Those mini nutritional drinks are kind of surreal. Like what do you mean I can drink 320 calories in 2 gulps?