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

@KathaJ2 4 times a day ? Do you space it every 4 hours ? And you noticed nothing before that (if you remember) ? Thanks a lot

@AntoineMECFS First noticed an effect at 60-60-30-30. Titrated up towards this. Now on 60-60-60-90retard. I usually get on well with medication with little or no side effects.

Have some Mestinon responders seen no effect at 30mg but positive effects at 60? I'm on 30mg 2 times a day since 2 months, can't think of a positive effect and wonder if I should try more or give up. Always difficult with a baseline feeling like constant PEM and worsening #MECFS

My brave, loyal father, who has stage 4 cancer and just months to live, visited me yesterday for what surely will be one of our last times together. He was visibly tired as he sat by my bed and talked to me about his walk along the seafront in the spring sunshine. 1/2

@AntoineMECFS Yes we have many, many findings. But now we are in a long process of rigorous data science correcting for all types of confounding factors that can create artificial signals. But maybe next month we will start to share some findings. Super excited to when we are ready

@NBoydGibbins Exciting !! Can't wait !

Long COVID and ME/CFS can be treated A 20+ year patient I know yesterday told me they had gone from tolerance for only 2 hours of phone per day in a dark room to 12+ hours of function, talking and going outside after a successful treatment. They are cooking for the first time in half a decade Less than 1% of the possible therapeutic space has been explored, and the patient population may be defined 100 subgroups. Meaning if a patient tries 10 drugs at random they may have only a 1 in 1000 chance of response Matching treatments to diverse mechanisms, developing precision combinatorial therapies, and temporal therapeutic resolution may all be needed. But the problem is tractable with enough data scale

I'm the same, I really think at a certain severity we just have no choice. Like eating something a bit too much will crash me, but I'm already severely underweight so what can I do ? Stop eating ? Then it's hospital and worse crash. Same for the phone. Can't blame ourselves when it's literally all we can do 🫂

P.s don’t want pacing advice, try only being able to use your phone and say a few words and see how hard it is. I know I use it too much and I constantly feel guilty about it. Just wondering if anyone else is the same? I’m sick of this, I dunno how I’ve lasted this long.

know I’m a stuck record & always say I’m crashed but I genuinely am. Not PEM - it’s the full blown poisoned death feeling. I’m never fully out of one. E.g. can have a stable morning (for me) but eventually it’ll always hit. Is it just inevitable at this level? Beating myself up

@JackHadfield14 Hi Jack, thanks for the amazing work as always ! One question though : Why is the full data set not corrected to the 5-95 percentile of healthy controls ? It reduce the noise too much for a lot of data sadly... Do you plan to release it corrected in the future ?

Vascular gene panel now available for all individuals with RNA results. Covers genes linked to blood vessel structure and function, including endothelial biology, vessel tone, angiogenesis, lymphatics, and barrier integrity. More panels coming soon.

Very severe ME means lying in a dark room 24/7. No phone. No music. No visitors. Not because you’re resting. Because your nervous system can’t handle any of it. #MEawareness

Thanks for anyone who sent DM asking how things are. Sadly still spiralling & bleak, and my situation has turned into the dreaded life threatening situation. Since June 2025 stomach is barely emptying, any fats or protein are intolerable, so been surviving on just the same basic five food everyday. Due to malnutrition & extremely low ATP energy, my body is eating my muscles & tissue for energy at an alarming rate so I have the skeleton boney look.    As my Ischial tuberosities ‘sit bones’ have no fat/muscle padding left, its constant intense pressure pain, and trying to stop pressure sores. However lying on my sides isn’t possible as I start to crash after just two minutes as it’s too much exertion. Im already on the best alternating air mattress that exists. My breathing muscles are also struggling. So truly trapped in severe unsustainable torture.    Hospital feeding tube isn’t an option. I got taken in December, and despite being in side room, after 9 hours was close to collapse due to the exertion/stimulation, so ambulance had to get me home ASAP (photo below, even this is a mission) as hospitals can’t treat ATP failure. I am too unwell for hospital.  #pwME #MECFS #LongCovid

@pinakooklada Have the same issue despite taking 1mg slow release melatonin, 25mg daridorexant and magnesium glycinate + l-theanine. Nothing helps those awakenings. It's been 15 months like this

Does anyone know how to have better sleep? 😭 falling asleep is often not the issue (melantonine, ceterizine, valerian root), but I keep waking up up to 10 times a night, mostly from 4 to 9 am??? 😭

🧵Today we found out the Health Ministry has been sitting on a survey that shows the large scale of Long Covid (& ME/CFS) in New Zealand. Feeling emotional😡 >400,000 Kiwi adults had had LC at some point by June 2025 - incl 185,000 w ongoing LC Prevalence 4.3% - 1 in 23 adults

Mais @Opinions_Survey et moi sommes sévèrement handicapés. Comment on fait quand on est maltraités par le monde médical, avec une maladie incurable, une qualité de vie pire qu'un patient atteint de cancer stade 4 et aucun espoir de guérison ? PS : Ne me dis pas de me jeter d'un pont je ne peux quitter mon lit

@Opinions_Survey @AntoineMECFS Ya des centaines de personnes qui se suicident en France et tu crois quil se décapitent tous ? Non, votre souffrance ne justifie pas d'ouvrir l'euthanasie des personnes handicapées

Où en est la loi euthanasie en France ? Bientôt appliquée ? Je ne supporterais pas un trajet jusqu'à Bâle... #MECFS

@Opinions_Survey J'aimerais que ces gens contre l'euthanasie développent une EM très sévère pour voir si leur point de vue change. Ne pas vouloir mourir soi même est une chose mais refuser cette possibilité de mourir dignement à ceux qui n'ont d'autres choix je trouve ça juste dégueulasse

@AntoineMECFS Apparement il y a eu un amendement proposé qui pourrait nous inclure mais visiblement des gens se croyant de gauche font tout pour nous torturer à la place x.com/Chamorro5Elena…

@anna_reise87030 My blood sugar is super stable, I eat moderate carbs and have bought a 15 days captor to monitor it and I have no spike at all...

@AntoineMECFS Dr RebeccaRyan is a gastroenterologist here on x who treats complex illness patients. I think she also posted about worsening of dysautonomia after eating. For me it has to do with blood sugar.

It feels like the end. Tried to eat slightly more yesterday, big crash today. Can't stop losing weight. Worsen because of it. But hospital will kill me for sure. Just lost and terrified. Docs are clueless. I tried everything I could. Pray for me. #MECFS

@mecaregiver Just one bottle, even split through the day, makes me so full that usually I have to give one meal up...

@AntoineMECFS Yes I know carbs are a problem. And only one bottle in addition to other foods?

@Sally_writes Thank you 🙏

@AntoineMECFS I don’t know you but I see that we are following each other and this popped up on my timeline. I’m so so sorry to hear the situation you’re in. I really hope you’re somehow able to find the help you desperately need with nutrition

@Lisat89133876 Yes doing it, sometimes it helps sometimes not

@AntoineMECFS I know you probably have tried this but can you take lorazepam before your meals. I am in the same boat and it helps me to not crash to much from food. So sorry this is happening. I was like this 6 years ago

I can’t act.  I can think of worlds from simple to profound.  But I can’t act on making any of it.  So I sit and watch it.  And I watch the world pass by without it.  And without me.  This is the torture of #MECFS.  We are HERE and we are ALIVE but we cannot act on LIFE to LIVE.