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2 Dec 2025
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/1BXHuuJpu…
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
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Another failed drug : Memantine.
In 18 months I failed so much : LDN, LDA, Mestinon, Fludrocortisone, Midodrine, Cetirizine, Zyrtec, Famotidine, Ketotifen, Cromoglycate, DXM, Memantine, Guanfacine, Rapamycine, Low dose Aspirin, Pregabalin (once in a while for sleep), Domperidone (doesn't allow me to eat more), Prucalopride, Escitalopram, Paroxetine, Paxlovid, BPC-157, Quviviq (sleep is still as bad as before).
Everything either crashed me, gave me only side effects or did nothing.
Even Ivabradine which does lower my HR did not help any symptom, and even Ativan is mixed. Nothing ever moved the needle even 1% positively. I'm worse now than I was 1 year or 6 months ago.
And this is without listing all the supplements I tried and things like tVNS or nicotine patches.
Is just all feels so desperate and hopeless. I just don't know what to try anymore for the few months I have left. We need real treatments fast #MECFS
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Antoine 🇫🇷 V.Severe MECFS retweeted
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🔥🔥🔥#MEkills
"„Pacing“ bedeutet, langsam zu sterben. Es ist ein Konzept, das darauf abzielt, uns zum Schweigen zu bringen. Es soll uns und anderen vorgaukeln, dass wir nun über eine Methode verfügen, die uns das Leben ermöglicht. Nein.⤵️
10 May 2024
"Pacing" means dying slowly. It is a concept designed to silence us. It is meant to make us and others believe that we now have a method that allows us to live. No. It simply means surviving and delaying death for as long as possible.
We need urgency in therapy research!
#MECFS
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Antoine 🇫🇷 V.Severe MECFS retweeted
Watching all these blue rose deaths roll through my timeline this week and thinking that what we need is LESS assertiveness, LESS aggression, LESS urgency, LOWER expectations, MORE respectability politics
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Antoine 🇫🇷 V.Severe MECFS retweeted
Eine schockierende Todesursache muss noch hinzugefügt werden:
☠️☠️☠️verhungern☠️☠️☠️
Melanie, Maeve, Celine und andere #MECFS Kranke verhungerten, weil lebensrettende Hilfe in Form von künstlicher Ernährung/Port verweigert wurde!💔
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Antoine 🇫🇷 V.Severe MECFS retweeted
I have a lot of respect for everyone here on this platform, and especially for the women that are/have been advocating.
But seeing older generations not displaying empathy towards those of us who got sick in childhood is actually really upsetting me.
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Antoine 🇫🇷 V.Severe MECFS retweeted
🖤#RIP Klaus Schorn 🖤
Klaus hat sich verabschiedet...🥀
Es ist unerträglich, schon wieder ein #MECFS Tod!💔
Wir brauchen politischen u. gesellschaftlichen Druck, damit endlich lebensrettende Medikamente für #MECFS zugelassen werden!
klaus-schorn.de/2026/06/absc…
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Antoine 🇫🇷 V.Severe MECFS retweeted
Excuse me being frank, but have you noticed ME/CFS research seems unserious?
Too many theories rely on this "no damage, flip a switch and you're cured" basis, which seems more an attempt to be hopeful than something supported by evidence/realistic.
If we want to be serious, why are we not doing invasive biopsies (incl autopsies) and catalog TEM images from every single cell/tissue types everywhere in the body?
If we want to be serious, why are we not looking at regenerative therapies like cell therapies, advance blood filtration techniques, manual lymphatic clearance, etc? Why does every proposed treatment involve either a supplement that does nothing or a pharmaceutical that masks one symptom and make the problem pop out somewhere else?
Maybe funding is the biggest limitation here, but you all have tremendous voices. You can at least be announcing this is what we need money for. I realize you all are working hard for a good cause, but I think it would be better to work less hard knowing we were moving in the right direction. Just being honest it doesn't look like we've been getting anywhere with the approach we've had.
@VirusesImmunity @C_Scheibenbogen @ngklimas @SonyaGradisnik @DeryaTR_ @RobWust @CoRESinai @TeamPostX @JoostKlappe
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Antoine 🇫🇷 V.Severe MECFS retweeted
🖤#RIP Kim Linke *6.10.2000 - †10.6.2026🖤
Die ehemalige Volleyballerin Kim, die früher ein Sportinternat besuchte, ertrug ihr #MECFS Leid nicht mehr. Ihr bleibt als einziger Ausweg der Tod, weil Hilfe wie immer verweigert wird.💔
TV Bericht über Kim:
ndr.de/nachrichten/niedersac…
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Antoine 🇫🇷 V.Severe MECFS retweeted
Jun 10
The *extent* to which ME/CFS is under-researched compared to other diseases
The relative knowledge gap has accumulated over decades of under-funding (/just not funding at all)
Jun 10
Ja, ME/CFS ist noch nicht so in der Tiefe erforscht wie andere Erkrankungen.
Ja, deshalb sind die biomedizinischen „Beweise“ noch nicht so stark wie bei MS oder Krebs zB.
Aber es gibt einige biomedizinische „Beweise“.
Und: Man kann auch einfach mal 650.000 Patient*innen GLAUBEN.
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Antoine 🇫🇷 V.Severe MECFS retweeted
Jun 11
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Heavily suffering and depressed and the only things I can do to distract my mind is coming here or on Reddit just to see people that can do so much things I would kill to be able to, even just listening to music or anything... My mental state is very very bad, I'm litteraly counting the days before my death everyday upon waking #MECFS
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Antoine 🇫🇷 V.Severe MECFS retweeted
Quand je pense aux victimes des Spikeopathies, ce à quoi mon esprit se raccorde immédiatement, c'est la nécessicité de développer des plateformes biotech de diagnostic avec une recherche de :
1. Marqueurs inflammatoires et mastocytaires : tryptase, chymase, IgE totaux IgE anti-Spike... excellent pour le volet allergique.
Cela permettrait aussi d'affiner la provenance des IgG4 anti-Spike post-injections anti-covid.
2. Un volet endothélial / microvasculaire : VEGF, sCD40L, sCD14, capillaroscopie, ThT (thioflavine T) pour les amyloïdes et les fibrinoïdes.
Des bilans hémato, focus sur la coagulation avec des mesures de l'état des plaquettes.
3. Neurologique : NfL (neurofilament light), ratio Aβ40/42, IRM avec perméabilité BHE (ex. : dynamic contrast-enhanced MRI). On peut inclure la PrP...
5. Immunitaire : phénotypage lympho complet marqueurs d’épuisement (PD-1, TIM-3, LAG-3, CTLA-4) cytokines (IL-6, TNF-α, IL-10).
Il faudrait taper dans les sérologies également pour la réactivation de virus latents comme EBV, CMV, VIH... et les PCR qui vont avec.
6. Dosage direct Spike par spectrométrie de masse... un des tests les plus utiles et les plus manquants. En plus des sérologies covid et des biopsies ciblées.
Ce serait top d'avoir un traceur covid pour repérer les réservoirs.
Techniquement, tout cela est globalement faisable dans un centre de recherche universitaire équipé.
Les obstacles :
- Réglementation (IVD)... Très élevé car tout test diagnostique doit avoir un marquage CE et/ou certification ANSM. Très long et cher.
- Financement... Élevé
Il me faudrait plusieurs millions d’euros. Subventions PHRC, ANR, Europe, ou investisseurs privés très rares sur ce sujet.
- Acceptation médicale : Extrêmement élevé -
La plupart des médecins et sociétés savantes françaises nient ou minimisent encore les Spikeopathies.
- Preuve de concept : Élevé
Il faut des études cliniques solides démontrant une valeur diagnostique/pronostique sur un panel.
- Opposition institutionnelle
Élevé
Risque de blocage si je mets trop en avant le lien avec les injections anti-covid.
L'option la plus réaliste à ce jour (2026-2030), c'est de créer une plateforme de recherche clinique (pas un labo commercial tout de suite) au sein d'un CHU ou en partenariat avec une équipe existante (ex. : service d’immunologie ou neurologie). Or, je suis en dehors des clous et pas MD.
Commencer par une étude observationnelle sur 100-200 patients (Long COVID PVS) avec un panel complet.
Demander un PHRC (Programme Hospitalier de Recherche Clinique) ou un financement Inserm.
Une fois les données publiées, passer à un kit diagnostic ou une offre de service.
Bref ! À moins d'une révolution générale... allez, bon lundi et bonne journée.
Je vous lis... @Machabouttier, @lilou_lm95, @mcvolant, @HouseLyndseyRN et tant d'autres... @AAVIC_TEAM... @apresj20...
Certains me contactent directement... et je peux apporter mon éclairage. Parfois, c'est trop tard... et je ne peux plus rien faire que d'analyser un dossier médical post-mortem.
Après, en toute humilité, je cherche aussi et je n'ai pas la science infuse. Je fais juste mon travail...
J’aimerai pouvoir tous vous soigner. Vraiment.
Mais aujourd’hui on est face à un vide thérapeutique dramatique sur les Spikeopathies. Et sans la reconnaissance des Spikeopathies, il ne se passera rien. C'est un peu un serpent qui se mord la queue. Et c'est pour cela que je travaille d'arrache-pied : pour la reconnaissance des Spikeopathies, le développement d'outils de diagnostic et les soins.
N'oubliez pas que je fais aussi partie des vôtres... tout comme @Marc_Doyer et @verity_france. Je suis aussi une victime. Même si je ne me plains pas...
Alors, je suis avec vous : covid-longs et PVS.
Merci 🙏
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Antoine 🇫🇷 V.Severe MECFS retweeted
💔Habe eine sehr traurige PN erhalten:
🖤#RIP Anna Fischer *15.9.1984 - †25.5.2026🖤
#MECFS raubte ihre Lebensqualität, ihre Hoffnungen, Pläne und am Ende ihr Leben. Ihr Leid, ihre Stärke und ihr täglicher Kampf dürfen nicht vergessen werden!🕯️
facebook.com/story.php?story…
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Antoine 🇫🇷 V.Severe MECFS retweeted
We have these massive data centers the size of cities and quantum computers that can run trillions of years of computations in seconds, yet we can’t figure out what meds to prescribe someone with complex chronic illness.
Spaceships and robots are advancing hundreds of years into the future and healthcare is stuck in the Stone Age.
What bizarre, horrible, lopsided technological progress.
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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
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Antoine 🇫🇷 V.Severe MECFS retweeted
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.
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Antoine 🇫🇷 V.Severe MECFS retweeted
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.
11 Aug 2025
1) There's a new document with care advice for patients with (very) severe ME/CFS.
It was published by the Austrian Society for ME/CFS and the Center for Public Health at the Medical University of Vienna.
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Antoine 🇫🇷 V.Severe MECFS retweeted
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 ;)
guys i’m so excited that this model of clinical assessment is working ibcreadibly well for the first ppl with #longcovid #mecfs !
im confident this will become a standard of care preliminary assessment for these patients.
and as always I’ve made it free for all, while clinics charge you hundreds of dollars each time.
you can just select a little tip when you use it to cover my costs and keep it always free
you want me to share the link?
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Antoine 🇫🇷 V.Severe MECFS retweeted
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. 🧵
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Antoine 🇫🇷 V.Severe MECFS retweeted
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
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