Ah perfect thanks for the reminder

Initial results from the Big Survey of >5000 pwME are deeply disturbing… disbelief by NHS healthcare professionals, made to feel their ME was their fault, traumatic encounters with clinicians.

This can not continue.

More on 11 May👇🏽.

Thanks @kacheston.bsky.social and @actionforme.bsky.social.

holaa

Cheers. I very much related with the bag of bones one.

I don’t know if it’s just me but the page gives me an error

TRAILER: Buried Alive with M.E.

I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm.

People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death.

#pwme #millionsmissing #severeME

1/

🫂

📰 Publié dans ICI Picardie, il apporte un éclairage essentiel sur l’encéphalomyélite myalgique (EM), en abordant plusieurs aspects majeurs de la maladie : le malaise post-effort, le sommeil non réparateur, l’errance médicale, ainsi que les risques liés à la réadaptation à l’effort pour les patients.

This is a good idea I think. Though the politics of who gets into that registry etc has the potential to be controversial and problematic.

🫂🫂 hoping your body finally lets you get some rest

I believe we had a couple small decently done studies that already came to the conclusion that Paxlovid didn’t improve Post-COVID.

But for some reason RECOVER decided to put what I imagine is tens of millions into this trial?

A summer/spring view of the Léman. A small forested island and a rowboat is visible. The savoie pre-alps can be seen in the background. The water is turquoise and a small pier is visible. The transition to the lake is rocky with some green patches.

Would walk a couple mins down to the lake and watch the swans :)

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

Prevalence estimates in a bar chart beside number of participants in Long COVID trials in Canada. PHAC eestimates 1.4M StatCan estimates 3.5M ever had it with 2.1M still having symptoms. They estimate 600K missed work or school. Only 4.2k participants in Long COVID trials enrolling in Canada

An estimated that 2.1M Canadians are living with #LongCOVID and 600k are missing work or school as a result. Most have no access to trials. Only 38 are enrolling in Canada with less than 4.5k total participants.

For #LongCOVIDAwarenessDay, I looked at funding and trials.

1) 🔬🦠New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past 40 years.

A longread with separate chapters on:

- viral persistence
- cytokines
- neuroinflammation
- antibodies
- immune cells such as NK, B, and T cells

Yeah I feel that. My brain gets so mad internally when people say „What‘s the worst that could happen“… Like… Homie… You have no idea…

Yes. I’ve actually been in contact with the group. They are working on some cool stuff. This paper is just based on a data and conventions from a study they designed what 20+ years ago, when criteria for ME and the meaning of “Me/cfs” and “severe me/cfs” were decently different to today.

For what it’s worth — their criteria for “Severe ME/CFS” is “fulfils atleast two ME/CFS diagnostic criteria” and their criteria otherwise is “fills atleast one” which is nearly always Fukuda in this dataset, which doesn’t require PEM.

So basically “severe me/cfs” just means “me/cfs” here.

I would guess that the majority of Severe cases actually happened post-2021, (since basically all preventative measures vanished).

We don’t have a perfect dataset that shows this but this is the impression i’ve gotten and I spend a lot of time weekly scouring the latest epidemiological datasets.

Lien Gratuit archive.is/DwEfS

In general it would be cool if added though. Especially for the posts with graphs and stuff.

Same old story from psychosocial researchers.
An unblinded CBT trial found modest gains in the subjective outcome of fatigue. Which is almost likely bias. They measured physical activity with wearables, but failed to publish the results, later acknowledging no gains.
So no evidence CBT works.

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!