One of the more difficult mental aspects of "living" with a (very) severe form of #MECFS, at least in my case, is how easily it could have been avoided. With knowledgeable medical support, and with pacing, I could have stayed in the moderate category, potentially for decades.

This

If Sophia could express herself, or even type, this is what she would say. She NEVER feels tired and ‘fatigue’ falls way short of describing how she feels. It is so much more than that. ‘Pseudo dying syndrome’ is the best description I’ve heard yet.

Patients with #MECFS, does your PEM start with a nerve tingling or weird pulling sensation in the neck and cervical spine that then radiates further down your spine into your arms and legs? Thank you!

Trying our best. JAK stay inhibitors, an existing drug, is our current best guess.

I would like to share Christoph’s prayer with you. It’s from a medieval Tibetan monk, and he says it’s the only mantra/prayer that has ever made sense to him. He hopes it's able to bring some form of peace to some. 💙❤️

some hope this evening of John Chia talking about an upcoming paper this October of long-term COVID-19 antiviral use giving ME/CFS patients their lives back temporarily:

Because the prayer resonated so much with you, I thought today I would share Christoph's favorite poem with you. It's by Ryukan. He says the prayer is about acceptance and the poem is about knowing that ultimately there is no one to accept anything. ❤️

Vinod Khosla That’s one shot with little evidence behind it. We need more shots on goal. Billions being spent. Hundreds of new researchers. A real #MECFS research field established. I know you — Vinod Khosla — can do more. You know that too.

One of the big shocks about #ME for me was discovering I had to become expert in managing a very dangerous illness without any advice from medicine or the ME organisations. The NICE review has done nothing to improve the situation. The risk of death not even mentioned in it.

To patients with #MECFS: When your ME/CFS was triggered—whether by an infection, accident, or another event—were you taking an SSRI or any other antidepressants at that time or had you recently tried to discontinue one? Thank you! ---

To all MDs, immunologists, virologists, and researchers working on #MECFS and #PAIS: Do you think high IgG titers for certain pathogens have any relevance? Please share! Thank you.

Christoph: "If anyone would be really serious about helping people with #MECFS, they would just do a damn Twitter poll asking patients before investing millions in a trial that won't do shit. Helping people is not the priority."

Imagine dying from a disease BECAUSE it "doesn't exist" and "doesn't kill." Only with #MECFS. Shameful!

Another young person with #MyalgicEncephalomyelitis passed away at the weekend. I don't know the details but surely it's time NHS England stopped pretending ME is a mild illness people can recover from using psychosocial interventions. As usual, condolences to friends & family.🕯️

Farbe bekennen vor der Wahl - sieben Fragen von WE&ME-Stiftung und ÖG-Betroffenenorganisation an alle kandidierenden Parteien. Wer unterstützt von Kompetenzzentren bis sozialer Absicherung die wichtigsten Maßnahmen für eine gute medizinische Versorgung der an ME/CFS Erkrankten?

RIP Sammy. Another week, another dead young woman, 25 yrs old. Last week it was the reported death of an 18 year old, Isla Kidd, who had been ill from age 6.

Die WE&ME Foundation fordert vor der Nationalratswahl klare Zusagen von den Parteien für ein umfassendes Maßnahmenpaket, das die Lage von ME/CFS-Betroffenen verbessert. Wir fordern die Einrichtung von spezialisierten Kompetenzzentren, eine verstärkte Forschung und eine bessere

Dr. Fajgenbaum replied to our petition: 1️⃣ ME/CFS will be included in their analysis 2️⃣ They're developing a tool for patient data collection 3️⃣ They want info on existing drug repurposing 4️⃣ Interested in meeting with a patient 5️⃣ First results expected in 12-18 months

Christoph Ströck Christina Koch Same for my 13 year old. If the doctors hadn't told us to keep her in school, keep her active, make her do more sports, she probably would never have crashed to a bell score of 0 . By listening to this bad advice I made my kid even more sick #mecfs #mecfakids