Top Tweets for #severeMe
TRIGGER WARNING some people may find this poem upsetting
#SevereMEWeek #severemeawarenessweek #VerySevereME #SevereME #MyalgicEncephalomyelitis #pwme #MEAwareness #MillionsMissing #chronicillness #longcovid
@hopefullizzy Thank you for creating & sharing this, Lizzy. I know how much vital energy it took. Going through #SevereME is so hard & I’m always deeply saddened that anyone else is going through it, let alone the millions. 😔 Sending you extra love & 🥄’s this week, my Severe ME sister. 💙
“If you look at a condition like [ME/CFS], it is considered the most disabling disease of all diseases. When you look at the disease chart, it’s completely at the bottom, worse than cancer. The amount of funding for this condition, it’s pathetic” https://t.co/zqypc6IX3i
🎙️ Ep 6 of the #ImaginePodcast features Dr Jason Lam, who shares his journey from dancer to doctor, lived experience with complex illness, and why kind, curious and compassionate care matters for #SevereME. Content warning applies. 🎧 https://t.co/JdFxXqwBg6
#SevereMEDay
Solve & @BatemanHorne co-hosted a series on Severe ME. Webinar #1 focused on navigating health systems, role changes, daily care, caregiver mental health, and & maintaining healthy relationships.
Watch:
https://t.co/2EwWXlzHWb
#SevereME #MEAwarenessHour #SevereMEAwarenessMonth
Forward‑ME has published a new briefing paper for DHSC and NHS England on assessing very severe ME/CFS — also useful for patients and carers when dealing with health services.
It’s a living document, so feedback is welcome.
https://t.co/G5sltqBGTG
'Urgent Government Action Needed to Stop Neglect and Hidden Harm'
@YvetteCooperMP - email inbound.
#SevereMEWeek #pwME 💙
#SevereMEweek
A glimpse into some of the reality.
It’s Severe ME Awareness Week.
Here are some highlights from the explainer video on severe and very severe #MECFS I made in 2021. Experts discuss the lack of medical care, swallowing difficulties and tube feeding often being delayed until it becomes life threatening.
Morgen gehen wir anlässlich des Gedenk- uns Aktionstages für Schwerst- ME(/CFS) Betroffene auf die Straße.
Viele Betroffene sind zu krank, um selbst für ihre Rechte zu protestieren, erst recht wenn es so heiß ist. D.h. wir brauchen gerade jetzt Unterstützung 🙏🤝✊ 🧵 #SevereME
Use our advocacy guides to contact your MP.
https://t.co/GuQ8mNuHjT
#VerySevereME #SevereME #SevereMEWeek2026 #SevereMEAwareness
Use our advocacy guides to contact your MP.
https://t.co/88xbQ57J9x
#VerySevereME #SevereME #SevereMEWeek2026 #SevereMEAwareness
When your GP writes in a letter that you're home bound because you're chronically fatigued it always makes me cry inside a little...
#severeME #pwme #millionsmissing
@Paula_JKnight @BreastCancerNow I've had breast cancer and get palpation and an ultrasound once a year.
(No mammograms in my case.)
We should have a mobile specialist doing this at home for patients with #severeME.
TRIGGER WARNING some people may find this poem upsetting
#SevereMEWeek #severemeawarenessweek #pwme #MillionsMissing #MEAwareness #MyalgicEncephalomyelitis #SevereME #VerySevereME #chronicillness
🎙️ Ep 5 of the #ImaginePodcast features Stacey Hollings, who shares her experience of #SevereME, #Ehlers-Danlos Syndrome & #POTS, and why belief, compassion and better support matter.
🎧 https://t.co/Jnn03tXBtt
#SevereMEDay #CountME #EmergeAustralia
@me_hilfe_ev @EvelynF14598793 @GBuggenhagen @liegenddemoHann @dg_mecfs @FatigatioeV @NGKGermany @NichtGenesen @lightup_4ME @MECFS_BW @MECFS_Stuttgart @MMissingGermany @LangzeitC @LVStiftung @Community4MEcfs @HumanManifold @Ulrike_1985 @TeamPostX @FrauXausNRW @MEDocsPsytheras #LiegendDemo #severeME #SevereMEAwarnessDays #Regensburg #mecfs #cureME #fightME #Selbsthilfe #longcovid #Postcovid #Postvac #PAIS #MCAS #POTS #Dysautonomie #EDS #CCI #SFN #FQAD #disability
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