Yann (ME/LC)

Don’t have the energy to fill the form but Chris Ponting/Audrey Ryback/Jonathan Edwards are all good candidates imo

A meme from the animated show Bob’s Burgers showing Tina Belcher lying in bed wearing glasses and a purple shirt. The top text reads ‘When people who I haven’t seen since I became severe ask me how I’m doing:’ The bottom text shows Tina saying ‘I’ll probably be sad for the rest of my life. But besides that, I’m good.

There must be well over 100 ME/CFS biomarker studies, all claiming success – but none have been replicated.

And that's probably no better bet for forgetting media coverage either – it makes such a nice story (every time).

"there's no money for that" is a lie told by people who always seem to find a bottomless budget line for the things that serve their interests...

Romandie next please 🙏

I’m so angry at how shitty the world treats pwME. How many of us die for nothing to change. The pain that happens in circles without end.

We’re treated like dogs begging for scraps.

🫂

Oh nooo im so sorry. Sending Hugs!!

Thank you so much for the coverage betsy.

Apart from Akiko, has there been any serious talk about subtyping?

Can they fund Mella & Fluge’s dara trial 😂

thank you so much for the updates

A picture of a sea filled with boats with the caption “And so began the Great Pirate era!”

It’s telling that it’s mainly cis, straight, able-bodied people crying, “How dare someone lose their life over politics!” That reaction shows they’ve never had skin in the game. For them, politics is abstract. For the rest of us, politics is survival—how we navigate the world just to stay alive.

Might be straight up impossible as well for bedridden people, people unable to speak etc.

SVP Utiliser l’Alt Text

One day, hopefully in the not too distant future, I hope we can write the same about #ME/CFS.

Keeping ME/CFS in the Fight on Capitol Hill September 11, 2025 10:59 pm Hi friends, It’s Monique here, Advocacy Director at Solve M.E., with a progress update on the budget process. We’re right in the thick of appropriations season — when Congress decides how federal dollars will be spent next year. This is always an important moment for our community, but this year it’s especially complex. Here’s where things stand: The House version of the Labor, Health, and Human Services appropriations bill is deeply disappointing – and almost unrecognizably different from the Senate version. Funding in the House version is reallocated so differently from the Senate version that there is almost no way to compare them. It also focuses only on the POTS and Dysautonomia symptoms of ME/CFS, with no mention of post-exertional malaise or any of the broader systemic issues facing our community.

(US) "Keeping ME/CFS in the Fight on Capitol Hill"

solvecfs.org/keeping-me-c...

September 11 update from the Solve ME/CFS Initiative @solveme.bsky.social . At the end it lists 2 ways you can help.

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Ask your MP to sign the Early Day Motion! - The ME Association Ask your MP to sign the Early Day Motion (EDM) […]

UK PwME Advocacy Alert:

meassociation.org.uk/2025/09/ask-...

Le droit au Masque devrait etre fondamental pour des raison de santé ET d’anonymité.

Oh that’s so pretty. I’m jealous I want that bowl now 😂

Got 100% on the test

Oh damn didn’t expect this 😂. Haven’t taken a serious bio / med course in my life.

Svp utiliser l’alt texte

kreative Guerilla Aktivismus.

Ich lieb’s!

About ME-fondet ME-fondet is a Norwegian non-profit foundation dedicated to supporting biomedical research on Myalgic Encephalomyelitis (ME/CFS). We raise funds for high-quality, independent studies that seek to uncover the underlying mechanisms of this severe disease and bring hope for better treatments. Why Daratumumab? Promising clinical observations suggest that the drug Daratumumab – a monoclonal antibody originally developed for multiple myeloma – may help ME patients. A pilot study in Norway has shown encouraging results, and further research is urgently needed to confirm its potential. Our Goal We are now fundraising to finance the next stage of Daratumumab research. At present, all donations to ME-fondet go directly to the Daratumumab study. The project is not yet fully funded, and additional resources are needed to move the research forward. ME-fondet is working actively to help secure the remaining funds so the study can be completed and provide answers for patients worldwide.

New:

English-language version of donation page for a Norwegian non-profit foundation dedicated to supporting biomedical research on ME/CFS.

Currently looking for funding for important drug trial [Daratumumab] by respected research team

www.me-foreningen.no/om-oss/stott...

#MEcfs #PwME #CFS

Good point. I have similar thoughts about “complex”.

Which often has a connotation of both psychological and biological factors.

So I don’t like it.

Plus who are we to know if the pathology is complex given we don’t know the pathology yet.

The billionaires have been immensely successful at redirecting popular anger to powerless scapegoats.

sorry this is absolutely not a well structured post just a blabbering rant when i should be falling asleep but cant lol

A bit of the grass is greener effect but ME/CFS can really make you realise how much you enjoyed things that at the time you may have seen more as boring or a chore.

Like I miss cooking so much I wish I could cook. I wanna try new recipes and always taste different stuff.

Hhahahah glad i could share that :).

I’ve never actually watched the series myself. Just the books. My ME isnt at a point where I can watch something with tension without getting PEM. But I do have the series downloaded in my future hopes folder.