28 y. | Very severe #MECFS, and #POTS since Dec' 24, maybe #LC, #SFN and #MCAS too, idk | Bell 0/5

Doubs, France
Joined January 2025
CW: Death I met Lea (not her real name), who was also suffering from very severe ME/CFS, on Reddit in early August. She also had POTS, MCAS, EDS, and gastroparesis. We started talking after realizing how similar our situations were, especially when it came to nutrition, struggling to eat enough, and losing so much weight. She was hospitalized because of these difficulties and had spent five of the previous seven months in the hospital. I could tell from the very beginning that Lea was an incredibly kind person. She was smart and caring, always trying to help others even when she was struggling so much herself. She always found a way to make jokes despite her suffering, which was something I truly admired about her. We exchanged messages here and there, as much as our conditions and the time zone difference allowed. On August 30, she told me she would reply in a few days because she was feeling particularly unwell. But the days went by, and then the entire month of September passed without any news from her. I feared the worst. And sadly, I was right... A few days ago, Lea's father reached out to let me know that she had passed away in the hospital in early September. I'm still deeply saddened by her death, but I'm also angry. Because she was in the hospital, a place where she should have received the care she needed and been safe. Instead, she was denied help because she "didn't meet the criteria." Until she finally did. But by then, it was too late. Perhaps all of this could have been avoided if she had received the help she needed sooner. No one should ever have to go through something like this, especially not in their early twenties, after battling such a devastating illness for almost a decade. I can't even begin to imagine how much she must have suffered in her final days. Rest in peace, my dear friend. You deserved so much better. I will not forget you.🌹💙 #MECFS #MEKills
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Antoine 🇫🇷 V.Severe MECFS retweeted
“These are some of the sickest patients I’ve ever come across in my life.” Dr Binita Kane talking about #MECFS and the lack of research, specialists and services on yesterday’s BBC Radio 5 Live.
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Antoine 🇫🇷 V.Severe MECFS retweeted
Die Deutsche Gesellschaft für Humanes Sterben schlägt Alarm: Zunehmend junge Menschen, die an #MECFS erkrankt sind, sehen nur den Tod als Ausweg. Ein Ehepaar aus dem Kreis Bamberg will das nicht hinnehmen. (Paywall) fraenkischertag.de/lokales/b…
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Antoine 🇫🇷 V.Severe MECFS retweeted
Five years ago, Beth Dobbin was an Olympian Today, ME leaves her in bed 22 hours a day Even this interview could cost her months of health But she spoke anyway, because millions are suffering in silence, and she knows her voice might help them be heard bbc.com/sport/athletics/arti…
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Antoine 🇫🇷 V.Severe MECFS retweeted
🖤#RIP Kathi🖤 Wer genau zuhört, erfährt, dass die schwerstkranke #MECFS Patientin Kathi (†30) am Ende keine Nahrung u. keine Flüssigkeit mehr vertragen hat. Begleitete Sterbehilfe war ihr letzter Ausweg, dem qualvollen Tod durch Verhungern zu entgehen.💔 rtl.de/leben/videos/kathi-30…
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Still at home, no reply from specialist, and have no GP anymore as mine left. Starting to crash from thoughts which is the worst thing this illness can bring. Fighting to avoid thinking about something only makes your brain wants to think about it more. Extreme nervous system reactions to tiny things giving heart attack symptoms. Thought it was the end this morning, unfortunately not yet. I don't know who to try to reach anymore. Just lost. I just want it all to stop #MECFS
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Antoine 🇫🇷 V.Severe MECFS retweeted
CW: #Sterbehilfe bei schwerer ME Heute hat Tasch, seit Jahren schwerstbetroffen, folgenden Post auf Instagram veröffentlicht, mit dem ausdrücklichen Wunsch, diesen zu teilen: instagram.com/p/DeFFHwqgpEa/… "Vor 4 Wochen habe ich meinen Antrag auf Sterbehilfe offiziell eingereicht. Es ist ein Schritt, bei dem ich niemals gedacht hätte, dass ich diesen mit 32 Jahren gehen werde. Ich hoffe inständig, dass in der Zeit, während der Antrag bearbeitet wird, sich meine Symptome verbessern und ich wieder ein lebenswerteres Leben führen und mehr Hoffnung spüren kann. Es ist das direkte Resultat meines extremen Schmerzes, Verlust von Körperfunktionen und eines politischen, gesellschaftlichen und medizinischen Systems, das ME-Patient:innen wie mir die lindernde Versorgung, gesellschaftliche Relevanz und dringende Forschung verweigert. So kann ich auf Dauer nicht leben, auch wenn ich es immer wieder versuche. Es geht um die Erkrankung ME (Myalgische Enzephalomyelitis) von der in Deutschland mindestens 650.000 Menschen betroffen sind (mit Long Covid 1,5 Millionen!!!). Trotz der Schwere gehört sie zu den am stärksten unterfinanzierten Krankheiten weltweit. Die Lebensqualität von Menschen mit sehr schwerem ME gehört zu der niedrigsten aller Krankheiten weltweit. Sie ist vergleichbar mit der von Patient:innen mit fortgeschrittenem Krebs oder AIDS in den letzten Lebenswochen. Selbst die geringste Anstrengung kann einen Crash verursachen, eine mögliche dauerhafte Zustandsverschlechterung. Der Versuch, geeignete Therapien zu finden und ein dauerhafter, konstanter Sterbewunsch können parallel existieren und schließen sich nicht aus. Mein Wunsch nach Beendigung des Leidens ist schon sehr sehr lange da - angesichts der anhaltenden Unerträglichkeit der Situation. Menschen mit ME haben laut mehreren Studien ein deutlich erhöhtes Suizidrisiko. In einigen Untersuchungen gehört Suizid zu den häufigsten Todesursachen. Viele Menschen mit schwerem ME wollen nicht sterben – sie wollen, dass die unerträglichen Qualen aufhören. Zusätzlich erleben wir strukturelle Vernachlässigung, fehlende Versorgung und Gaslighting durch das (medizinische) System. Dieser Antrag ist keine leichte Entscheidung und keine erste Wahl. Er ist meine allerletzte Notbremse in einem System, dessen Mühlen langsam mahlen und das uns die angemessene Forschung und Versorgung und damit jegliche Perspektive verwehrt. Der Antrag gibt mir die Sicherheit, dass ich, sollte mein Zustand weiterhin unerträglich bleiben oder sich weiter verschlechtern, selbstbestimmt entscheiden kann, ob ich humaner sterben möchte oder nicht, um die Qualen nicht ertragen zu müssen. Ich kämpfe seit Jahren, versuche alles, aber der Zustand ist unerträglich geworden, weshalb dieser Weg als Absicherung dienen muss. Ich hoffe, alles wendet sich zum Guten. Ich bin kein Einzelfall. So viele schwer und schwerst betroffene ME-Patient:innen, leben in exakt dieser abgedunkelten Realität und Isolation. Unsichtbar für die Außenwelt.Ich teile diesen Schritt nicht für Mitleid, sondern aus Transparenz: Blickt auf diese brutale Realität, seht und hinterfragt das strukturelle Versagen der Politik und werdet laut für all jene, die es nicht mehr können. ME ist kein Schicksal, das man sich aussucht, sondern eine Hölle, in die man hineingestoßen wird, während die Welt einfach wegschaut. Die mangelnde Versorgung, das kollektive, strukturelle Versagen der Medizin und Politik und das gesellschaftliche Wegsehen kosten Leben. Ich trage diesen Kampf nach außen, damit niemand mehr so tun kann, als wüsste er von nichts. Ob ihr schockiert seid, empört oder ob euch das unangenehm ist: Nutzt dieses Unbehagen, werdet ungemütlich und hört auf zu schweigen. ME kills."
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Antoine 🇫🇷 V.Severe MECFS retweeted
In 3weeks I turn 32. I’ve never had a relationship. Never been on holiday with friends. Never finished my education. Never been out to work. Never lived away from family. Each year my 🌍 gets smaller. It’s 2yrs since I ate a meal. 16years since I went out on my own. I have #MECFS
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Message written by my partner, who is seeking advice on how best to prepare for a possible hospital admission: My specialist want me to be admitted to hospital due to my ongoing decline and daily post-meal crashes, which have been going on for over a year and have left me weighing 50kg at a height of 1m75. I’d like to hear from people who have been hospitalised, particularly those very severe. What advice can you give me to ensure I’m taken seriously, and that my stay in hospital goes as smoothly as possible? I’m trying to make this stay as bearable as possible, knowing full well that it will be awful and that it risks making my condition extremely severe… I’ve already thought about asking for a private room and requesting a letter from my doctor explaining my condition and the precautions to be taken with me, but I’m sure you’ll have plenty of good advice to offer; I’ll take anything that might help. Personal stories, documents, resources, etc. If the documents are available in French, so much the better. To give some context, my condition is very severe; I’m bedridden and can only tolerate my partner’s presence. I haven’t been able to speak to anyone else for over a year, no showers, and no video or audio stimulation whatsoever. I crash even from a simple blood test, and a 30-minute ambulance trip in February left me unable to go to the toilet to urinate. I already have crashes almost daily in the quiet of my dark room. Any help is appreciated #MECFS
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Antoine 🇫🇷 V.Severe MECFS retweeted
Angehörige, Freund:innen und Bekannte von ME/CFS-Patient:innen, die noch nicht aktiv sind, obwohl sie es sein könnten, müssen jetzt wirklich einen Gang höher schalten. Ein „homma hoit ned gwusst“ oder Ähnliches zählt nicht mehr. Dieser Wahnsinn wird nicht aufhören, bis eine relevante Masse aufsteht, laut wird und handelt.
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In the midst of my worst ever crash. Can type this and eat only thanks to Ativan. Total autonomic mess. Just wanted to write somewhere that if I die, whatever the reason, it will be MECFS and neglect that would have killed me. Giving my credentials to my partner in case she needs to ask questions here. She reached out in despair to our specialist yesterday : he said to take salt and PEA... I should have someone discussing hospital or nutrition solution or whateve. Ate 600kcal yesterday and today eating only with Ativan. Will try to update if I manage to get out of this alive #MECFS
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Keep seeing mild/moderate and even severe people talking about "the small joys", how they manage to adapt their life etc but what's the point when there's no small joy ? When even eating is suffering ? When you are symptomatic 24/7 with nothing to help ? Even my worst nightmares when healthy weren't even 50% of what very severe MECFS is. I don't even know why I'm still alive #MECFS
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Antoine 🇫🇷 V.Severe MECFS retweeted
Everything becomes tolerated/ not tolerated by the body. The strength of people enduring Severe/Very Severe ME (or any) is astounding. Your whole world is shrunk down until you’re reduced to a body in a bed, as you try desperately to grasp any last bit of what makes you YOU.
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Antoine 🇫🇷 V.Severe MECFS retweeted
🕊🕯
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Antoine 🇫🇷 V.Severe MECFS retweeted
This #suicidepreventionmonth lets me think of all those who are left untreated and abandoned with the most inhumane symptomes. Those with M.E who desperately want to live but are pushed into suicide and euthanasia. Stop abandoning us.
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Antoine 🇫🇷 V.Severe MECFS retweeted
I know I have asked this before. But is there any stories of people being v severe for 4 years +, funcap 0.7 level (no tv, unable to wash, FT care etc) who have improved to a more tolerable level? Just need something to cling onto and have read to me to help me keep going #MECFS
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Thanks everyone for the suggestions. Will ask my partner to look into it ! Sorry I can't reply to everyone individually 😥
Very severe people, how do you manage basic hygiene ? I needed my feet and hands washed because it's been months and I begin to have a nail infection. My partner washed one foot each day, and my hands today. Each time it triggers vertigo, nausea, and a global feeling of weakness. How do I balance this and infection risk ? Because since September 25 except my teeth nothing is washed except very rarely some parts with wet wipes #MECFS
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Very severe people, how do you manage basic hygiene ? I needed my feet and hands washed because it's been months and I begin to have a nail infection. My partner washed one foot each day, and my hands today. Each time it triggers vertigo, nausea, and a global feeling of weakness. How do I balance this and infection risk ? Because since September 25 except my teeth nothing is washed except very rarely some parts with wet wipes #MECFS
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Amazed to have discovered that there's a whole business for funeral urns, with really pretty ones ! Would've never thought about it. I found the one I want, will be perfect for my nerd ashes #MECFS
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