Yann (ME/LC)

The reason they give “we just pulled anything ME/CFS related from clinical trials . gov

is completely honest mistake IMO

The doubling down when criticised going on about “everything on there is reviewed by ethics boards

Put a bitter taste in my mouth.

Felt very “damage control PR” not genuine.

Hi, would it be possible to use alt texts on images to make them accessible. Thank you.

Thank you for fighting for pwME.

🫂🫂

A humorous meme showing a photorealistic T-Rex in the foreground looking up at a meteor streaking across the sky, with a speech bubble saying “Oh shit! The economy!!” Two other dinosaurs (appearing to be hadrosaurs or similar herbivores) are visible in the background. The scene depicts a prehistoric landscape with mountains and vegetation under a blue sky with clouds, satirizing modern concerns about economic collapse by juxtaposing them with the actual extinction-level event that ended the dinosaurs.​​​​​​​​​​​​​​​​

Visualisation of the NHS’s new pandemic policy

I mean „the times“ link sorry.

Hi George, thank you for sharing this. Just so you know, share.google links like you shared have trackers in them that hoover up data for data brokers (in this case google).

Using the normal guardian link would be preferable.

SO MANY people I want to tag so they can have a little schadenfreude reading this fraud case

"For example, the two researchers’ data showed people with a 'cancer-prone' personality were more than 120 times as likely to die from the disease as were those with a 'healthy' personality"

#NEISVoid

I’d be very interested in you elaborating what exactly you mean by “unmet medical need”.

Is this an EU category?

Perhaps we should start a S4ME discussion?

Our landlords want to sell the house we live in. I haven’t been able to get downstairs for 2.5 years due to #severeME.

I don’t know what we’re going to do. Moving me is likely to make me worse.

Just when you think it can’t get worse with this disease, it does.

Abolish chronic illness, please. I need to do my dishes and laundry

Vote results in French with all communes in red showing they voted against. The result reads 76.35% NO.

Today in my canton (ie. state) in Switzerland, we had a referendum to give disabled people under guardianship the right to vote.

Unfortunately 75% of the population voted against. The structural ableism here is very strong and it makes me very sad.

 Cat Lady's Quilt. catladysquilts +Chroniclllness 06/28/25 This is your friendly reminder that lying in bed all day is only enjoyable when it's RARE and VOLUNTARY. Bed rest is no fun whatsoever when it's half (or more) of my waking hours and there are a million and one other far more interesting (or pressing) things I would MUCH rather be doing. So please don't mistake my disability for luxury. If I don't rest this much, I will become too ill to function at all.

#chronicillness #chroniclife #Spoonies #Spoonie
#ChronicallyIll #Disabled #Disability #ChronicPain

Four years after their publication in 2021, 70% of adult NHS ME/CFS services in the UK are still not following the latest NICE guidelines % of 56 Adult ME/CFS Services in the United Kingdom meeting the following criteria 2k Include Severe ME/CFS 21% Yes 79% No Follow the latest NICE Guidelines (NG206, 2021) 30% Yes 70% No Mention post-exertional malaise (PEM) 64% Yes 36% No Are appropriately housed under non-mental health services 77% Yes 23% No Don't openly follow outdated NICE Guidelines (CG53, 2007) 95% Yes 0% No Data Source: ME Local Groups Network (MELN) NHS ME/CFS Services Stocktake 2025) Note: MELN Stocktake data is based on information publicly available from ME/CFS Services and Integrated Care Boards (ICBs). Services aligning with NG206 means following latest guidance on pacing, PEM recognition, and no GET. ME-Local Groups Network UK CrunchME

Four years after their publication in 2021, 70% of adult NHS ME/CFS services in the UK are still
not following the latest NICE guidelines

#pwME #pwLC

Source: crunchme.org

Oh I agree totally. I’m against the police or the state as an institution, even borders.

But I just think it’s a good talking point to get liberals on board.

Plus ICE is rather new. Most people don’t realise it didn’t even exist under Reagan or Bush Sr.

Long COVID takes $1 trillion global economic toll each year, analysis suggests

Just as some country's (e.g. Finland), are finding that it is cheaper to house the unhoused than not, the world may eventually realise that it is cheaper to prevent #LongCOVID, than not -

www.cidrap.umn.edu/covid-19/lon...

Hi could you use alt text on photos with text inside them please.

I agree. PwME deserve reparations.

German Assisted suicide organisation is seing many applicants from young people with ME/CFS.

Haunting article but glad it was written and not ignored as usual.

The review is open to everyone. Provide your evidence here. Strongly recommend every family persecuted by social workers too lazy to read NICE G206 make their voices heard. www.gov.uk/government/c...

1) INFO FOR RESEARCHERS: The charity ME Research UK (MERUK) has an open call for PhD-level research funding.

Applicants should submit an Outline Proposal Form before Friday, 9 January 2026.

Just to say how much I love and appreciate every one of the #ME brigade that post on here. Some can only watch and that’s ok, some have valuable information and that’s ok, some are scared and that’s ok, all of us understand and care and dare to hope for better days to come. 💙

Hi. I really appreciate your posts but could I ask you use alt texts to make these types accessible to blind and low vision people (and others who need it).

Black text on a yellow background - This is Alice's friend Sandy Ho, posting. Per Alice's wishes, this message is being shared at the time of her passing. Hi everyone, it looks like I ran out of time. I have so many dreams that I wanted to fulfill and plans to create new stories for you. There are a few in progress that might come to fruition in a few years if things work out. I did not ever imagine I would live to this age and end up a writer, editor, activist, and more. As a kid riddled with insecurity and internalized ableism, I could not see a path forward. It was thanks to friendships and some great teachers who believed in me that I was able to fight my way out of miserable situations into a place where I finally felt comfortable in my skin. We need more stories about us and our culture. You all, we all, deserve the everything and more in such a hostile, ableist environment. Our wisdom is incisive and unflinching. I'm honored to be your ancestor and believe disabled oracles like us will light the way to the future. Don't let the bastards grind you down. I love you all.

“Don’t let the bastards grind you down. I love you all.”

🥀 C’est avec une immense tristesse que nous vous partageons le décès de Nolwenn, une jeune femme de 30 ans atteinte d’EM.
Engagée, elle suivait de près l’actualité de notre association et avait participé activement à l’une de nos manifestations à Rennes.

1) New preprint from the Stanford group of Ron Davis.

They looked for 185 human viruses, and found traces of 17 viruses in patients or controls. "Surprisingly", the authors write "more viruses were found in the healthy controls than in the ME/CFS patients."

Also people with sound sensitivity from things like migraines or energy limiting illnesses.

And while we are somewhat included in most theory. In practice, if you look at actual existing self claimed marxist etc states, we rarely are included.
So IMO it’s not unreasonable to feel excluded when that language is used without ever acknowledging us.

*Marx 😭

not Mark