Antoine 🇫🇷 V.Severe MECFS

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 : facebook.com/share/1BXHuuJp… Instagram : instagram.com/toinous.asso?i… P.S : The name of the association is a between my nickname (Toinou) and the words "You" (Toi) and "Us" (Nous) in French

@YuceHonos26 @Opinions_Survey No, but I have no sign of any viral reactivation so I doubt it would help Thanks

@AntoineMECFS @Opinions_Survey Antoine, have you ever tried antivirals, such as valacyclovir or ascyclovir? We all feel for you, please hang in there 🙏

Summer is coming... hell for all those suffering from dysautonomia.n

There need to be more support for #severeME patients and their carers

@Opinions_Survey Juste un rafraîchisseur d'air. L'an dernier c'était déjà affreux mais je pouvais encore tolérer l'ouverture de fenêtre le soir pour rafraîchir. Cette année je peux plus... Courage...

@AntoineMECFS Tu as une clim ? Ma première canicule en v sévère, je sais pas si je vais passer l'été c'était déjà l'horreur avant avec brûlures et perte de connaissance

If you've used orexin antagonists (Quviviq/daridorexant, Belsomra/suvorexant, Dayvigo/lemborexant, vornorexant) Did you experience a loss of effect over time?

That‘s so heart-breaking. How can society, how can anyone accept this state Stefan is living and suffering in? I am speechless. Praying for you.

@zagreusrevival Exact same 🫂 Just surviving thinking about this everyday

So crushingly true. I was such a Good Employim that I spent my early 20s working non-stop, then got long covid and lost all ability to live. Now I'll die soon, and I basically have not lived a day in my life. Would have been better off being homeless & just reading books...

People don’t realise how much you can lose and still have to live every hour. I’ve lost walking, my brain, normal vision, friends, food, music, love, career, hobbies, sunlight, sleep… I can’t even grieve it without getting sicker. Disease takes more than you realise you had.

If you do gardening, cooking, etc, please stop identifying as bedbound. No wonder the general public doesn't understand how gravely ill some of us are.

microdosing death by having post exertional malaise

@MartinMoltke I'm so sorry my friend... I have accepted that I will be unable to write goodbye letters because it's too much effort and emotions... I don't even have the strengh to handwrite my will, which I need to... 🫂

Tried writing letters to be given to my two little nieces who I love dearly upon my passing & when they are older but couldn’t do it. Began crying like baby then threw up then got stomachache…on top of all other symptoms ofc…unfathomable to be this sick & tortured & never ends

@aprettierpixie Yes I'm still in the worse of it... Pregabalin did nothing for me before and Lorazepam does not help much

@AntoineMECFS Is this since the crash caused by LDA,? Aren't there any rescue drugs you can take to get through this crash? I know you take lorazepam sometimes. Pregabalin has never worked for you?

Can't eat without feeling like suffocating, feeling like dying 24/7, looking at my phone, whispering or moving gives me chest pain and breathlesness. I'm sliding everyday more towards extremely severe and I'm terrified. I just want it all to end #MECFS

Being very severe physically and cognitively really is like being dead except you can still feel pain, malaise, sadness and grief #MECFS

@NBoydGibbins @NeleHelena 25 or 50mg ? I'm on 25mg since September but haven't seen any improvement in my 10 to 15 awakenings at night, it's actually worse than ever since a few months. I'm on 25mg but my REM feels weird, I'm having like 10 dreams a night... It's slowly making me even worse each day

Daridorexant is a relatively new insomnia medication that inhibits Orexin-1 and -2 In the general population it's very effective because inhibiting Orexin-2 improves REM patterns, reduces sleep wake cycles, and increases total sleep time It's actually even more interesting in ME/CFS because Orexin-1 is a stress pathway in the brain. I don't have bad insomnia (just terrible sleep quality where I wake up much sicker every day), but I was a fairly significant responder to this drug. Subjectively I felt that inhibiting stress signalling in my brain caused an overall improvement over 6-12 months. It also changed my trajectory. I had been stuck in a very bad place for 6 months without moving. I turned a corner after starting dariorexant When I first took it I also had like two incredible nights' sleep that felt like good sleep quality. I take a lot of sleeping meds. My doctor listened to the list and said "you should be asleep now" I know another patient who had no response to this but my very good LC / ME doctor in the UK says he's prescribed it to many patients and that he's seen a lot of good responses Obviously this is not medical advice, but you might want to read about it and ask your doctor. In the UK there are online pharmacies where you can do an online consultation. It's very expensive here but had a significant impact in me

It's not okay that for insomnia as a consequence of chronic illness and physiological processes in the body healthcare doesn't have anything to offer but sleep hygiene. "Don't sleep during the day" okay I'm not doing that, I physically can't. 1/

I live more in my dreams than in waking life #mecfs

@Naomi_D_Harvey I can just testify that it did nothing for me and I had to stop because it destroyed my bloodworks

I’m sure this has been asked before, does anyone have threads where people have replied about rapamycin for those who are very severe?

I want to know how ME folks, especially bedridden ones, are successfully able to end it. It’s always a secret. I know in some cases they have had help. But what about others. I feel so hopeless being gatekept out of info and supplies.