Antoine 🇫🇷 V.Severe MECFS

28 y. Former company lawyer.
Life decimated by v.severe #MECFS, and #POTS since December 24
Previously big 🎮 and ⚽ fan, now somewhere between Bell 0 and 5

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

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 asking for any subscription (5€ to support the association and me), but if you can just drop a like on Facebook or Instagram, that would be very appreciated. Thanks ❤️

Facebook : https://t.co/I6c7DO5PLJ
Instagram : https://t.co/NnlFvPenkb

P.S : The name of the association is a between my nickname (Toinou) and the words "You" (Toi) and "Us" (Nous) in French

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

@danka_mm I'd love to but I can't distract my mind and my thoughts keep getting back to this at one point...

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

Everyday the same questions in my mind : Why did I became very severe so fast ? Could I have prevented it ? Why haven't I seen any improvement in 18 months ? Am I doing things wrong (even though I'm doing nothing as I can't tolerate anything) ?
What's even harder is having no answer or no clue about it all. Pure despair #MECFS

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

@lara64390 Yes, same sadly. I tried around 50 different meds and supplements and found none that helped even slightly, but like 8 that worsened me. Pure hell, I'm sorry

[Salvatore Mattera @SalvMattera]

Some people are delusional about disability and believe every disabled person can live a full and rich life if only they'd be given the right accommodations. This is magical thinking - it is simply not true.

[ME/CFS Science @mecfsskeptic]

1) There is now also an paper on caring for patients with (very) severe ME/CFS.

The guide describes how care should be adapted, from nutrition and personal hygiene to communication and dealing with energy limits and stress.

[Danilo.Buonsenso_Surf4Children @surf4children]

I was planning to release it with an article in two sundays.
however, given the enthusiasm, I could give an early release here with a post and not many details, you just try yourself and let me know.
as all is free can I just ask a like and retweet to spread the voice?
I’m sure with such a report no doctors will unsee you anymore ;)

[IntegralAnswers @IntegralAnswers]

1/ Long COVID is one of the most complex post-infectious syndromes ever studied.

A new review in Nature Communications Medicine attempts to unify the biology.

Here’s what’s established, what’s emerging, and what’s still speculative. 🧵

[elle carnitine 🍉 @elle_carnitine]

Being a carer for a disabled person is incredibly hard, but there is a world of a difference between carers who think it’s hard because the disabled person is a burden and those who think it’s hard because the state has abandoned disabled people

[M͓̽e͓̽c͓̽k͓̽e͓̽r͓̽ₘᵤₜₜᵢ 📢 @MeckerMutti]

Die „Holy Seven“ der ME/CFS-Pathophysiologie, die Kliniker immer noch lieber in die Psycho-Ecke schieben, statt Fachliteratur zu lesen:

​1️⃣ POTS / Dysautonomie
➡️ „Nur eine Angststörung“ (Ignoriert: Stehende Tachykardie, Fehlregulation des vegetativen Nervensystems).
⬇️

[Nele @NeleHelena]

I wish there was more written on very severe #POTS #dysautonomia. It's always "take your fluids + beta-blockers and you'll be fine". Once in a while I read that people need a wheelchair. But it can be way worse. It's never mentioned that some people can't sit or are bedbound 🔋⬇️

[Christina Koch @CK65375]

What a tragedy.

I didn’t know Mirjam personally and only just learned of her story on Facebook.
https://t.co/nqcqDOrkC4

Rest in peace, Mirjam.

My deepest condolences to her family and all who knew and loved her.

#MEcfs #severeME

[Arf-PEM-Jansen 🪫 @dokter_Arf]

Fck my life. My house (body & brains) is on fire. The Fire department refuses to put out the fire. Nor anybody else.
Every gd damn day.

How do I explain this to my 3 kids - if I can’t even explain this to myself ?
17 years sick and still in utter disbelief.
#MECFS #LongCovid

[Emma 🦋✝️ @Emma40025133]

There’s so much I want to do with my life but simply can’t. Been stuck in purgatory for 5 years in what should’ve been the prime of my life. I’ll never accept this. It wasn’t meant to be this way

#LongCovid

[Stefan Arce ME/CFS @stefan_arce]

Im on daily nutrition. No supomgas.
Este soy yo
Estoy severo
Todo me duele
I survive for severe routines rigid.
I have severe tics

[Martin @MartinMoltke]

I wish we could be placed in coma for months at a time to both rest completely and get out of the suffering for awhile…shame this can’t be done

[Whitney Dafoe @DafoeWhitney]

Imagine watching everything you care about in a house that starts to catch fire.  And there’s a firehose one meter from you, but you're tied to a chair and can’t move.  So you have to sit there and watch it all burn.  That is everyday, over and over again, living with #MECFS 💙

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

My partner does the medical appointment for me as I can't speak to anyone except her. And she is taking care of me as well as working a FT job. But it is up to me to do all the research. I'm now starting to become even too severe for that and am burnt out and willing to give up anyway

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

@Aurore_eee @VioletaQSmith @amaticahealth Mon test amatica a montré de nombreux dysfonctionnements un peu partout mais malheureusement chaque tentative de prise en charge symptomatique n'a rien produit ou produit un crash... En revanche mes voies histamines/leucotrienes sont plutôt réduites qu'activées

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

For those in Germany who tested positive for GPCR AAB, did you do anything after that/accessed any treatment ? Did that help ? I'm living near the border and want to try a desperate thing, I'm positive to M2 and B2 Aab. The new study convinced me. Any doctor that would accept to consult a French patient,ideally that speaks English or French ? Thanks for your help #MECFS

[Antoine 🇫🇷 V.Severe MECFS @AntoineMECFS]

My worst symptoms are big dysautonomia/POTS with low BP and tachycardia with awful OI (can't stand up or sit for more than 2 minutes a day), stimulus intolerance (audio, videos, sound, can't do anything without immediate PEM) and PEM. I have a lot of symptoms including breathlesness, chest pain, tinnitus, vertigo, weakness, flu like feeling etc