Share your #MEperspective to raise awareness about our limited lifes and perspectives! #MEawareness #MillionsMissing #EndMECFS

ME/CFS and Long COVID research often misses the sickest individuals. Many severe individuals are housebound or bedbound, so research that needs clinic visits can end up studying the people well enough to travel.

#MEAwarenessDay 2012 Mein Sohn wurde mit lebensbedrohlichem EBV in Klinik eingewiesen, Beginn schwerer #MyalgicE Links 2012: Der letzte gesunde Tag Rechts 2025: Die letzten Tage vor Absturz von #SevereME auf #VerySevereME, 24/7 bettlägerig, Flüssignahrung, Gastroparese, Bell 0

ME/CFS ist, als würden Menschen unter Trümmern liegen und rufen: „Wir sind hier. Wir brauchen Hilfe.“ Und statt zu graben, diskutiert man darüber, ob sie vielleicht nur lauter rufen müssten. Ob sie sich zu sehr auf die Trümmer konzentrieren. Ob es wirklich so schlimm sein kann,

#MEAwarenessDay 10 years 99.9% bedbound. 15 years since the illness began. 23 y/o to 38 y/o in the blink of an eye, but the extraordinary suffering has been felt in every second of those years. And there are thousands like me, or worse. #MECFS #ME #MEAwarenessDay

Today is ME/CFS Awareness Day. I am a very severe ME/CFS patient. I have not left my mattress in around 9 years, and I have been sick much longer. I cannot have visitors. I cannot watch TV. I can speak only very little with my caregivers. I can only read a few pages per day, sometimes less. I live mostly in darkness, in constant pain and physical discomfort. There has not been a single day in the last 10 years that was not “ME/CFS Awareness Day” for me. For millions of patients, this disease is not a campaign, a hashtag, or a yearly reminder. It is total life destruction, every single day. What we need is not symbolic awareness alone. We need serious research, clinical infrastructure, political recognition, urgency, and your help.

Why am I always so shocked when I’m hit by delayed PEM…it’s the total opposite of the BPS stance that we expect it and make ourselves ill. I never expect it, I’m always delusional about “getting away with it” until suddenly I feel extra awful & I don’t know why, till I remember.

Sorry to report that musician and poet James Strazza passed away this week. He had been suffering from severe ME since 2019. Condolences to family and friends.🕯️🕊️💙 (There's a link to his website in his Twitter bio.) #MyalgicEncephalomyelitis #MECFS

Two poems by James Strazza who died this week. He had been suffering with severe #ME since 2019. A rare and sensitive man. It’s incredibly sad that once again we are mourning one of our own. May those that have blocked research and psychologised ME feel the pain of their actions

I’m sorry for venting so much, and thank you to my parents for everything they do for me. Severe ME/CFS is not just fatigue. It affects my body, mind, movement, speech, senses, emotions, and ability to act. I don’t refuse help or care because I “don’t want it”; everything has to be timed, tolerated, coordinated, and survived. I live with severe pain, movement disorders, sensory overload, brain fog, PEM, fear, guilt, and exhaustion. My parents are exhausted too. We all love each other, but illness, trauma, and caregiving burnout make everything harder. I’m not asking strangers to fix my life. I only ask to be believed, heard, and treated with patience and humanity. I need safe, integrated support, advocacy, and care that my body and mind can actually survive.

In my estimation, she got better and therefore she could also train in 30s installments. Maybe the coconut oil did help her on her last steps... Seems to me a typical Post-Covid case: bad in the beginning, therfore called ME, but not really ME. Thus, improving on its own.

🖤#RIP Anna Löcher *10.4.2000 - †10.4.2026🖤 🥀Anna - an ihrem 26. Geburtstag wurde ihr junges Leben ausgelöscht, seit 2017 litt sie an schwerstem fortschreitendem #MECFS 🕊️jetzt ist sie wieder mit Mama und Oma vereint 💔Anna - du fehlst! x.com/mecfsanna

Schön zu lesen, dass es nun wissenschaftlicher Konsens wird, dass LongCovid ein heterogenes Krankheitsbild ist u nicht alle Pats in 1Topf geworfen werden dürfen! 2024 wurde unser Artikel, der damals schon zu diesem Schluss kam, noch von Nature abgelehnt: pubmed.ncbi.nlm.nih.gov/3912…

ME/CFS & LC peeps: Has anyone tried any of the newer, experimental treatments for immune activation? I've been reading about: -Flovoxamine -Metformin -Rapamycin -Regulatory cytokine IL-37 Any experience with these? Did it help? Side effects? Thanks!

We need a biomarker for diagnosing ME asap. Can’t come soon enough. Every time a patient who believes they had ME recovers from rehabilitative methods, it threatens the next patient who truly does have ME and gets harmed by the same approach 😪

Sobald ich auf Social Media einen Account sehe, der angeblich MECFS hatte und dem es jetzt deutlich besser geht, bin ich gespannt welches Wort als erstes kommt. Podcast Buch Ebook Coaching oder Nervensystemarbeit Manchmal auch mehrere.

People think PEM is fatigue after doing an activity. It’s not. It’s something that can permanently worsen your condition and you never recover from it. It’s damage. It’s damaging that people are using PEM to describe other illnesses. Ffs. It’s so unique it defies science.

PEM is exclusive to ME. PEM is the delayed onset/delayed recovery of worsening/new symptoms, 1-3 days after exertion that is outside of our capacity. Some are calling their response PEM when they are actually having dysautonomia, MCAS or exercise intolerance. 1/

My father is 67. Today he fed me, but by 1pm he was already exhausted. He woke up crying, saying he can’t take it anymore. “I’m old.” I’m bedridden. Severely ill. And I depend entirely on him. People say “go to a hospital,” but I would be worse there. Strict schedules, lights, noise… it would crash me harder. I already have pressure ulcers because I’m not getting enough movement. This is what severe chronic illness looks like.

Ist wirklich spannend, wie die meisten Menschen, die keine Katastrophen oder persönliche Tragödien erlebt haben, davon überzeugt sind, dass sie derlei magischerweise niemals erleben werden

Wenn ich von der verheerenden #VerySevereME Erkrankung meiner Söhne erzähle, denken viele ich übertreibe & glauben mir nicht... In Wirklichkeit ist jedes Wort eine Untertreibung - denn es gibt keine Worte, die das verheerende Ausmaß treffend beschreiben könnten.