Top Tweets for #severeMECFS
"ACHTSAM study protocol: outreach diagnostics and assessment of tolerability in severe ME/CFS—a pilot study" Fricke et al., BMJ Open (2026) https://t.co/tZmmnY66yM #MECFS #MEresearch #SevereMECFS
Is anyone here very severe (unable to sit up or tolerate any light due to extreme lack of energy, feeling like the body is dying) and microdoses a glp-1 and it’s helped with fatigue and Pem? Any stories? #pem #severeME #severemecfs Wegovy or Monjuro?
For me the major challenge of very #severeMECFS is believing that such life (with horrible symptoms, careless drs, friends leaving) is worth it. That my inner self is worth waiting for a treatment which may happen in a decade. Can’t stop grieving for the life that never happened.
@Dan_Wyke Makes me proud that I with #severemecfs send friends pictures of flowers too. I grow my flower collection on the internet
When you have #severeMECFS, you can't be very active at all, so if you're lucky and can tolerate a screen (and many or most can't), about the only thing you can work on involves your computer. I'm tired of my computer. I want to go outside and play in the dirt. Make something stupid. Show no one. Take it no where. And destroy it afterwards. And then rub the dirt in my face and run around like a madman. #MECFS
Acts of real journalism concerning #MECFS patients where the real story of our lives is told, and where the facts are presented are so very rare.
As a #SevereMECFS patient in Canada who is bedridden and who cannot speak, who has days when I cannot eat or drink water. Thank you.
I’ve spent the past weeks talking to #ME patients and carers in Wales.
There is a spectrum of severity, but there are thousands in dark rooms across the country, unable to walk or talk.
Tomos is one of them.
Watch/listen/read on BBC Wales news today ⬇️ https://t.co/OHa7mcE2rp
Even a mere 1% increase in the small, everyday tasks I perform throughout the day makes me realize, despite my cognitive impairment, just how inhumane these living conditions are.
Someday I will die to this disease.
#MECFS
#severeMECFS
#LongCovid
We value your experience and invite people (or #carers of) severe/v #severeMECFS who have been through the NHS Continuing Healthcare (CHC)#assessment process to share their experiences.
Comment below or message us at [email protected]
Visit: https://t.co/RyNKyAYQwn
The hardest stage of severe ME/CFS isn't the wheelchair... it's realizing you have to shave your head. PEM from washing hair? Check. Mental toll? Brutal. But i found a hack that gave me energy back! 💇♀️😭
New video: https://t.co/dPF8OVUJ6N
#MECFS #SevereMECFS #ChronicIllness
Please retweet, quote tweet and comment on this — don’t just like it! ⬇️ It boosts engagement
I have #SevereME #SevereMECFS so I can’t heavily promote my fundraiser, worsening symptoms and no one to help with medical or hygiene or daily tasks, crashing lots trying to get care ❤️🩹
New update! Please share
3 more neurosurgery tests + 3 other tests in 2-3 weeks plus two specialist appointments with NY doctors
Need all the help I can get, financial aid denied to non-NY residents may leave me unable to afford care/travel to more care
https://t.co/lts1LL5ocX
na toll, hab mich bei meiner Mama angesteckt, trotz einigermaßen Absonderung und Maske (sie ist halt meine Pflegeperson wenn mein Papa arbeitet und meine Schwester in der Schule ist).
hab 37.7 Grad und fühl mich richtig platt.
#severeMECFS
It’s only January 1, and I already wonder how I’m going to make it through another year with #severeMECFS
hatte ich mir mal vor einiger Zeit gespeichert falls ich mal ins Krankenhaus muss:
#severeMECFS
Swears in #SevereMECFS
A newly restored version of the original version of ‘STAR WARS: A NEW HOPE’ will be released in theaters on February 19, 2027
(Source: https://t.co/FPybku1Bc5)
Tomorrow is my 6 year anniversary since I last saw the sun. #MECFS #SevereMECFS
Also, My last eye appointment. My doctor said, "Oh we'll do more Retinal pictures next time."
love this. it reminds me of the miserable life I’m in with #severemecfs #mecfs #longcovid …. I’m really gonna die in this house … locked in darkness
If there’s beauty, say it’s enough…
House featuring John Cale from my upcoming album for “Wuthering Heights” is here.
https://t.co/sYZwU6peyL
2/
Abstract for:
Contested and neglected: Social and medical marginalization in severe Chronic Fatigue Syndrome
Free fulltext:
https://t.co/D9WAXdwKAj
#SevereMECFS #SevereCFS
‼️Last slide contains citations to studies ‼️
#SevereMECFS #MECFS #NeuroImmune #ParalysisAwareness #InvisibleIllness #ChronicIllness #DisabilityAwareness #Neuroinflammation #MyalgicEncephalomyelitis #EndTheNeglect
Help has been lacking in all areas for many years. This is a last try effort.
Campaigns are separate so everyone can decide where they want to donate.
#me #millionsmissing #severeme #severemecfs #heds #cci #POTS #mcas #disabled #followerpower #PleaseHelp #GoFundMe #helpinghand
Links to donate:
https://t.co/XGd2R6SKKb
https://t.co/SqW2RQfLD0
Every share, donation, and act of support
matters. Let's fight to keep Nevra alive!
#MutualAid #pwME #SevereME #DisabilityJustice #Fundraiser
#SevereMECFS #SevereME #VerySevereME #DomesticViolence
I’m begging from the bottom of my heart — please take a moment to read and share Nevra’s story.
She’s fighting for her life with Very Severe ME, trapped where care doesn’t exist.
Her death is preventable — if people act.
#SaveLizNevra #PwME #VerySevereME
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