2025, what a nightmare... Bedridden since February, I discovered I had MECFS after three years of diagnostic uncertainty. My initial diagnosis was very mild, and I ended up somewhere between severe and very severe. This illness is torture. I've lost my job, my independence, my

Things that I think are happening in ME/CFS: 1) The mechanism of brain fog is exactly the same as the mechanism of PEM. 2) This disease state is essentially the opposite of cancer. Upon cellular damage, immune recognition/apoptosis/cell cycle inhibition is preferred over

https://t.co/aYvLbWoxzH @JackHadfield14 Tu as vu Jack, sequençage Arn.

Holidays are a strange time for chronically ill people - you’re expected to be cheerful and festive, but they are just another day of symptoms for us. If anything, they’re a reminder of the life you can’t enjoy.

Talking Again in 2025 I started eating again in 2024.  After 11 years not eating a crumb of food or even drinking a drop of water.  I got all fluids and nutrition from tubes inserted into my body.  For 11 years.   In 2025 I have another big improvement to announce.   I have

Ein Meilenstein im Fachgespräch des Bundestags „Nationale Dekade gegen Postinfektiöse Erkrankungen“: @C_Scheibenbogen verkündet den Einstieg von @sanofiDE @SanofiUS in die gemeinsame #MECFS-Forschung. @BundesregDE @BMG_Bund @bmftr_bund

1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.

my ghost after i finally kms and they come out with a cure for ME/CFS a day later

Vanessa needs our support. #MECFS has ended many lives again in 2025, partly due to a lack of financial resources for expensive therapies. No one supports us; we must take action ourselves to prevent this. Please donate; her date is already in Jan 2026🕊 https://t.co/Y8FgKdqy2v

Call for Funding a New Clinical Study on Daratumumab for ME/CFS - Signez la pétition ! https://t.co/me0lQ7uCwK via @ChangeFrance

In our RNA sequencing data, with only the initial 20 people, we also found hints of altered HPA axis. Looking forward to the extended data with 100 patients and 60 control in 2026.

🆕 𝐍𝐞𝐰 𝐚𝐫𝐭𝐢𝐜𝐥𝐞 𝐰𝐞 𝐡𝐚𝐯𝐞 𝐩𝐮𝐛𝐥𝐢𝐬𝐡𝐞𝐝: “The Genes of the Survivors: How Immunological Inheritance Drives Autoimmune Diseases, Long COVID and ME/CFS” 🧬 Certain ancestral HLA-II haplotypes (DR2–DQ6, DR3–DQ2, DR4–DQ8) provided advantage during epidemics because

FOR ALL MILD AND MODERATE #MECFS PATIENTS you guys take up 75% of the patient population. When you talk about what me/cfs is like, for the love of god don’t describe it at your level. Cancer and other illnesses are defined by the WORST of it. It’s not defined by fast diagnosis,

Scientists found COVID-19 in the brain months after infection. A landmark NIH-led study examined autopsy tissues from 44 people who died of COVID-19 during the pandemic’s first year—all unvaccinated and with severe disease. The results were striking: SARS-CoV-2 was found

Anktiva is probably one of the most interesting drugs in trial for Long COVID. It works by raising key immune cells that seem low or poorly functioning in LC condition. This thread explains what the drug does and why researchers are testing it.

My wonderful friends worked on an association to raise awareness on MECFS locally, organize events and support me against v.severe ME. Even if I can't see them or can barely stay in touch with them, they are working on it since months, and it has now be officialized. I'm not

Nothing has ever made my ME/CFS permanently worse than the attempts to get better. That doesn’t mean the average patient shouldn’t try (primarily low-risk) interventions, but they should have an awareness instilled from the very beginning to approach treatments with care.

Un immense merci à @ElsaMargueritat pour cet entretien riche et pertinent dans @MarianneleMag à propos de mon livre "Épuisé" paru aux @EdLObservatoire Extraits: "Nous vivons une épidémie d’invalidité de masse dans un silence de honte. 2 millions de COVID long en France, des

PESE ou PEM ? It s the same thing ? @sunsopeningband Good morning. I have had severe/very severe ME/CFS since March. Bedridden. 300 to 500 steps per day. Intolerance to screens etc. I take LDA to tolerate light and phone calls and have to take a small dose of benzo to sleep at