Turn 36 today & I’ve spent my entire thirties with #LongCovid. When I turned 30 I was biking to work 10 miles a day, & since my mild covid infection — I struggle to walk more than a block or work more than a few hours a week.
Here’s 4 things I wish everyone knew:
@CrazySadAzn When I read TLG that’s all I could see. He’s so stressed and just barely getting through that he develops tunnel vision and misses things.
I’m just getting sicker & sadder.
There is no event, big or small, that is worth this loss.
Masking saves lives & livelihoods.
Take care while you still can.
Day 3 of my sister trying to go back to work and it's destroying her. Just one month of radical rest could be the difference of recovery or a second heart attack. Every dollar helps, every re-tweet helps.
Thank you all so much, I'm humbled and grateful for the help.
@seanstidston@Sabrina_Poirier I don’t know. She does not respond well to feedback at all. I haven’t even seen a screenshot of what she deleted this time around.
@davidtuller1 Apart from the lying my favorite part is they claim to understand PEM, but then do this:
“The intervention was informed by existing rehabilitation frameworks, which have shown promise in managing chronic fatigue syndromes.”
Except source 12? It’s about MS. Not ME 🤦🏻♀️
Wow we are almost at 1000 signatures now. Thanks for all those signing especially those on behalf of Megan 🥺 @MECFScomrade you’re still making the world a better place
Apologies are extremely rare in the world of ME/CFS, so it’s encouraging to see such a good example of someone acknowledging a mistake, taking responsibility and implementing a solution. This is how you write an apology. I’d like to see more of this, please.
@CureLongCovid@HarryLeeming Unfortunately these biopsychosocial (BPS) researchers are entrenched in the ME world.
It’s taken decades of patients fighting against them to turn the tide and get research to focus on physiology and not just psychology.
Chalder’s history
https://t.co/Vopy48Cv6E
@LongCovidAdvoc CrunchME has a database of clinical trials with any BPS nonsense stripped out - and if we've missed something, if you flag we will review and remove if appropriate:
https://t.co/myIMg8MOpW
We will also be considering a 'near me' feature with location search on our site🔍
This is a public emergency call for help. My condition is extremely severe, and I no longer have the physical or neurological capacity to survive without immediate external intervention. I live with constant pain, neurological crises, and extreme hypersensitivity to sound, voices, and my environment.
My parents are my only caregivers. They love me and do everything they can, but the level of exhaustion is absolute, and my condition has far exceeded what a family alone can handle. This is not about blame. This is about human limits in the face of a devastating medical reality.
Medically, many only say that my condition is terminal — but there is no active protection, no emergency support, no institutional response. I am still here, fully conscious, suffering, and I need help now, not only a prognosis.
I am calling on health authorities, social services, human rights institutions, and emergency medical systems to recognize this situation for what it is:
👉 a medical, humanitarian, and protective emergency.
I am not seeking conflict. I am seeking immediate protection, urgent medical and social intervention, and a real care network. My situation is not mild. It is a human emergency.
#EmergencyHelp #HumanitarianEmergency #MedicalEmergency #SevereDisability #ChronicIllness #MedicalNeglect #PatientRights #DisabilityRights #UrgentIntervention #HealthAuthorities #HumanRights