Press release on Pan-European ME Patient Survey results: a shocking indictment of European policies “Failure to act decisively now will perpetuate unnecessary suffering and neglect of people with #MECFS—a clear violation of #HumanRights” EMEA, April 2024 europeanmealliance.org/emea-pan-europ…

DR. Ashley the Charlatan 💚✊🏳️‍🌈🏳️‍⚧️✊💚 Good morning & ty💚 If any allies would like to pitch in to help me buy some extra food this month, I'd deeply appreciate that + my 37th birthday is soon and my wishlist has $30 items account.venmo.com/u/alanchipmunk cash.app/$ap1933 PayPal.me/anthonymister throne.com/gunswordfist

Please help my friend! I vouch that he's a real person

A new issue of our Patient-Generated Hypotheses Journal is out! It includes hypotheses on mechanisms & treatments for #LongCovid, ME/CFS, & POTS from patients & caregivers with diverse backgrounds, ranging from PhDs to self-taught patient experts. patientresearchcovid19.com/patient-genera… 1/

Liz Moore hypothesizes that lowered dopamine and/or dopamine dysfunction could be the underlying mechanism behind the brain fog and fatigue associated with #LongCovid. patientresearchcovid19.com/hypothesis-chr… 3/

We hope this issue inspires biomedical researchers to use these hypotheses in their research, to partner with the authors and other patients/caregivers in testing hypotheses, and to uplift patient-generated hypotheses as credible sources for research generation! 6/

don’t forget about imani and sophia. they cant risk using socials to raise funns! someome just sent us a screenshot that they sent 20! can anyone match ?

“That seems to me like one of the reasons why the Patient-Generated Hypotheses Journal is such an important project, because it is a pathway to scribing these things" Check out the Q&A on the latest issue of our Hypotheses Journal👇

Salutations from our shared dystopian nightmare. Baby unicorn tear time is again nigh! I come to ask your help covering the cost of 🦄💧infusions, bills while I can’t work, & co-pays & meds. account.venmo.com/u/TinuWrites gofund.me/d4e14d4e #MutualAidRequest #ForTinu

The bad news is my costs were $14.7k this month. The good news — thanks to increasing sales, new projects, 3 generous repeat donors who came through in big ways? I have most of it & need only $2123 to close the gap. account.venmo.com/u/TinuWrites #ShowUpForWishes

There’s a real chance I will break even this month, a REAL chance that by winter I might not need help! At all! Getting half of this ridiculous mess of extra costs myself Could mean when costs go down I might not need help! There’s a *little* more bad news though.

Psst #NEISvoid if you need a reason to hop over to 🟦☁️ Thought you should know that @bennessb.bsky.social is occasionally over there too, when energy allows

> I seem to have subsequently lost all capacity to make any significant progress. A lot of that has to do with me having spent the preceding *three months* expending all of my capacity trying to apply for supports & benefits—with lackluster results, but for #PEM & deterioration.

Even though Twitter is a shadow of what it used to be, it’s still a place disabled people find each other and create community. Just look at what @tinu did on this platform and the huge impact she made. I miss her & value all of you here online that I call my friends

if you have any funds it’d be great if you could donate to this fund for tinus send off and to support her family and could you please share gofundme.com/f/honoring-tin…