I blocked the other guy. 670 is a covid aware MD and those are rare, so I'd rather not!

"Life" as a #pwME in the UK in 2026.

Despite talk of "never-events" and a "final" delivery plan.

Nothing meaningful is being done. An active choice by those with the power to chose.

If you have the wrong illness, this country kills you slowly through 1000's of agonising cuts of neglect.

You don't have to understand. You just have to listen to your disabled comrades when we tell you it's a problem.

Also why ONS stopped asking long covid questions in their longitudinal surveys.
Also why that asshole got knighted twice.

Etc. Etc.

And the current lot are doing the same thing all the previous ones did. The occasional discussion in parliament. Then a report. Then a big fat nothing.

Eugenics tbh.

💯
Because all our governments for decades now are trying to run the country for profit like a business and only think of next quarter. They willfully ignore the actual cost of our illness to the economy so they can balance their books over our backs. Also why NHS keeps no accurate count of pwME.

I really think every article about Long COVID should mention ME/CFS, but it’s an even more jarring omission because the picture is from an ME Action protest. @meactnet.bsky.social

This article also does not make it clear that people are continuing to develop Long COVID from reinfection.

seems to be the norm for ME in the NHS. There's good ones but they are by far the exception. Out of 8 GP's I've dealt with over the past 8 years, 2 were openly this bad, 1 was actually good, just believed me; and the rest just couldn't help but also didn't seem keen to try and figure out how.

[pic of grover in front of an empty canvas] grover shows a pic of who the f-ck asked for your medical opinion mybodyistryingtokillme.com

Mother Jones has been incredibly dismissive of those with ME following vaccinations. Extremely disappointing from a publication that claims to understand how isolating chronic illness can be.

The detailed agenda for the International ME/CFS Conference 2026 is out and it is just amazing. Top-notch novel research, 2 ministers, 50 researchers, focus on the hard (but needed) neuroimmunology road...

Have a look. No stone unturned! Just impressive 👏👍

events.mecfs-research.org/en/events/co...

will you only be covering US or the rest of the world too?

well sure I get that is frustrating.

But to then condemn all the people in florida alike, when there's plenty who *didn't* vote for the assholes, is not a great take.

... wow. Eugenics much?

by the way I am Dutch living in Scotland. Won't stop you blaming me for your problems, I'm sure. Or feeling superior.

Sure. and then there's all the gerrymandered minorities, vulnerable people, etc, who can't get out of florida because of poverty. Happy to cut them all out too?

"if only we could cut the south loose the US would be perfect again"? You're covid aware. Biden was very happy to declare to pandemic over

Many Drs & HCPs still believe that the advice that Emma was given, which made her #ME so much worse, is the correct advice
They're supported in many cases by the Royal Colleges, who refuse to support the '21 @nicecomms.bsky.social g'lines for #ME
Healthcare is still unsafe for #pwME

How would you react if you went to your Doctor after losing your health because of #LongCOVID and were told to do Yoga by Adrienne?

It's 2026. Are they doing this to 30% of their patients?

#medsky
#gaslit

Is this a systemic Semmelweis reflex?

Yes.

Yes they are.

The other day an NHS GP told me that PEM has been "debunked".

"The rest of the civilized world" isn't fed up with florida, but with the US. All of it. You lot voted trump in and aren't doing anything to stop him. So if we go by your bigoted generalising approach we should cut YOU personally out like a cancer. Yes?

Get real dude, plenty of good people in FL

A friend of mine a #pwME for 30+ years was diagnosed with early onset dementia 6 yrs ago
Her carer/husband📧me to tell me that unable to give her the care she needs she's now spending her last days in a care home
Another #pwME who never saw recognition for #ME, care or treatment💔

I don't think they've forgotten what people want so much as are just pointedly ignoring it because they think they can make more profit this way.

New university free speech complaints system to come into force this year Universities could face fines of £500,000 or 2% of their income if they are found to have failed to protect free speech.

This reporting suggests Bridget Phillipson's legislation will muzzle those of us who want to protest against Far Right speakers who say our Black family are intellectually inferior and our Trans family are all potential sex offenders and are mentally ill.

What an unbelievably terrible Government.

Apologies here's the signing link:

docs.google.com/forms/d/1cB6...

As if our government cares about pupils with higher support needs...

It’s not "normal" to pretend a disease doesn’t exist—or nothing can be done to reduce harm.

Leaving kids, communities, and ourselves exposed isn’t “moving on,” it’s neglect, coerced, morally repugnant, indifference.

If that upsets you, ask yourself: are you an arseolist?

A snippet from our upcoming book. Sharing the stories of those living with myalgic encephalomyelitis.

#MCAS folks—

The newly formed International Society for Mast Cell Activation Syndromes has a 10-min survey to learn how they can best serve MCAS patients and caregivers.

Please take it, please share it!

Survey: forms.office.com/e/N4RDJYVep0

Org: ismcas.org

Qs: advocacy@ismcas.org

The first rule of CFS club is you do not push through

everyone finds this out the hard way

Certain doors demand your attention when walking passed them, demand you wonder about what happens beyond them. They generate an intimate, personal folklore, unfold odd stories in your mind. I'd knock upon them, but the sense of mystery is just too valuable. – #MattAdams

15h by Author I tried to Pace but never really mastered it, as a mom there are so many things... Then I couldn't do ANY of the things because my moderate ME became very severe ME. It is a whole other world, that I didnt even realize was a possibility! Now I'm bedridden and dependent on anyone who happens to check if my commode needs empty or if I have water or food. On a good day I can brush my child's hair. Take pacing seriously! Reply Message Hide 2

A tragic cautionary tale that was posted on my Facebook page. 😢

#MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Over store deler av den vestlige verden skjer det samme: Elever slutter å gå på skolen. Sverige holdt skolene åpne under pandemien. Likevel stiger fraværet. Utdanningsminister Simona Mohamsson kaller situasjonen for «en stor fiasko».

Front page news today in Norway that more and more children are missing school since the pandemic started. Even in Sweden which never had lockdowns and where schools never closed.

Such a mystery..

No mention of #LongCovid of course.

www.aftenposten.no/norge/i/M7A7...