My wonderful friends worked on an association to raise awareness on MECFS locally, organize events and support me against v.severe ME. Even if I can't see them or can barely stay in touch with them, they are working on it since months, and it has now be officialized. I'm not

Please let me go peacefully in my sleep... That's already far too much suffering, the hospital will just kill me... I don't want to do it anymore...

It's truly difficult, trying to survive in a state where you're closer to death than to life. Without adequate help from the healthcare system. Chronically ill, chronically ignored MCAS, hEDS, POTS, Small Fiber, progressive muscle weakness, drug poisoning (FQAD, Flagyl),

@NeleHelena Same here. It’s really just the excrutiating physical pain and suffering that is the hardest to handle. It’s a level of torture no one can even fathom until they experience it. And even then I still can’t believe it is real.

I had a beautiful life that I loved before all of this.. all I wanted was to live a long, healthy life. That reality is gone for me now & I don't want to be here anymore. I'm sick of being trapped in a body that isn't fit for life.

Having extreme stomach pain now on top of gastroparesis like issues. + Nausea, bloating, gaz, etc... Can't eat enough again and feel like dying... I don't want to go to the ER because they will not help but how long can I hold on when being already BMI 17? Feel like I will have

Pls what are the best 1 to 2 pages documents with the best infos on hospital stay for very severe patients ? Even better if available in French. Will need it very soon, trying to have a bit of control on what will happen... Thx #MECFS #LongCovid

Think I've reached a new low sadly... Don't seem to rebound at all, can barely keep my eyes opened, head pressure is awful, tinnitus 10/10 as always, gastroparesis at it's worse, and even my usual approx. 2h phone use are now too much... Will try to take a break from everything

Let the project stopping all my meds start tomorrow

Thought it was supposed to not be addictive ... Couldn't sleep without it, had to take it at 1am and got sleep paralysis again... It will be difficult... #MECFS #LongCovid

I think Quviviq is trying to kill me. Sleep paralysis every night, awful nightmares, and last night had a sleep paralysis attack where I couldn't breathe and couldn't get out of it. Scary... #MECFS #LongCovid

Hope, hope, hope, always... When will we finally see real benefits, especially for the severe/v.severe who have nothing else to hold on to ? #MECFS #LongCovid

Let's see what 2026 have in store for me. Either an improvement story or another live ended too soon because of #VerySevereME #MECFS #LongCovid

#RIP Laura

Being bedbound and having dysautonomia & POTS with low BP and low resting HR really is the worst combo. There's almost no meds that can help without lowering BP or RHR. I have to choose between my heart dipping to 45 at night and feeling awful or jumping to 130+ going to the

kids to me tonight: "it's illegal for me to stop hugging you." "Can we stay with you all night please? I could keep you up all night telling you about Middle School!" "Can I call you tomorrow and talk to you?" "I wish we could visit you everyday." Hugging, "this feels so good, I

We are holding on so tight to something that feels like a memory of life. The colours are sharper and acrid and but somehow muddied. Still, beautiful. We are holding on. We are searching. We are reaching for the light switch in our child. We are looking for the spark that will

accepting that I am sick with Myalgic Encephalomyelitis must be the most challenging, saddest, terrifying, painful, lonely, scary, worst thing that has ever happened to me in my life

Until you live the life of a severe patient, having to lie flat near 24/7, cannot walk, pissing in bedside urinals your family empties, you can’t say anything about how someone chooses to try to save their life +access treatment. We decline every day until there’s nothing left

Turning 28 today. Crashed as hell. This ain't a life. I hope it's my last year as sick as that, either getting better or being freed from this suffering for good. #MECFS #LongCovid

For those with low BP, what are your experiences with Fludrocortisone ? Helped or not ? Any side effects ? I'm on day 2 at 0.05mg and have weird hot flashes that I don't know if it's that or something else. Thanks ! #MECFS #LongCovid