PhD Biochemist. #SevereME 🛌

Joined July 2011
577 Photos and videos
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A disaster for Karen as her Hickman line has broken. We posted an update on our petition on 10 June. To read it scroll down our petition page to UPDATES. Save Karen Gordon From Dying (…) chng.it/CGMQTDVvRb Please share Photo:9/6/26-K with broken IV line having blood K,H&M
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It's not just the exploitation of a tragedy. JD Vance's picture of Britain - where migrants have led to a crime surge - is the opposite of the truth. comment.press/vance1234
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🕯️#RIP Mirjam Knapp * 08.12.1999 - † 28.04.2026 Mirjam wurde mit 14 zwangseingewiesen, auf grausamste Weise aktiviert u. misshandelt, nur durch die Hilfe von Dr. Speight durfte sie nach 20 Mon. wieder heim. Sie starb an #VerySevereME.🖤 In Gedanken bei ihrer Familie.💔
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I spoke too soon. 8 days after finishing the amoxicillin course and the bladder/tummy pain is back with a vengeance. 10/10 on the pain scale today! 😪 #severeME
May 23
Been on amoxicillin for 4 days 4an unrelated infection & hv noticed I have less dyspepsia as well as bladder pain less brain fog!! Anyone else had a similar experience? Wld appreciate RT/repost. My 2024 endoscopy biopsy was negative for H.Pylori. #SevereME #RT #LC
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Every word of this... Tony 'Board of Peace' Blair's manifesto for Britain could have been written by a tech bro billionaire, like the one who bankrolls his Institute.

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sometimes stuff doesn't need a complicated explainer
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May 23
Been on amoxicillin for 4 days 4an unrelated infection & hv noticed I have less dyspepsia as well as bladder pain less brain fog!! Anyone else had a similar experience? Wld appreciate RT/repost. My 2024 endoscopy biopsy was negative for H.Pylori. #SevereME #RT #LC
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Today is ME/CFS Awareness Day. I am a very severe ME/CFS patient. I have not left my mattress in around 9 years, and I have been sick much longer. I cannot have visitors. I cannot watch TV. I can speak only very little with my caregivers. I can only read a few pages per day, sometimes less. I live mostly in darkness, in constant pain and physical discomfort. There has not been a single day in the last 10 years that was not “ME/CFS Awareness Day” for me. For millions of patients, this disease is not a campaign, a hashtag, or a yearly reminder. It is total life destruction, every single day. What we need is not symbolic awareness alone. We need serious research, clinical infrastructure, political recognition, urgency, and your help.
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The bigger question: how many more "personal gifts" there have been, to Farage or any other political players? Does any UK democratic regulator have the power to find out? Crypto kings now dominate US donations. UK aspect only starting to become clear. comment.press/nf55
Parliament Standards Investigation Opens Into Farage Donation order-order.com/2026/05/13/p…
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in honor of James Strazza who died this week from very severe ME i want to share a blogpost by him and his mother Galen, which has accompanied me for the last years and helped me in more ways than i could say. rest easy James 🤍
10 Aug 2023
Ein ehrliches Gspräch zwischen James Strazza (Betroffener) & seiner Mutter über ME, das Ausmass des Leidens & darüber, wie er dem 'Lied der Sirenen' widersteht. Es macht das Ausmass der Schmerzen deutlich, zeigt die inneren Prozesse auf - wundervoll. galenwarden.com/post/severe-…
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So shocked & saddened. Another young life lost to #severeME. Anna was so beautiful inside out and I fondly remember chatting to her about ‘Black Mirror’ as we were both fans. Fly Free Anna 💙🦋 #rememberME
🖤#RIP Anna Löcher *10.4.2000 - †10.4.2026🖤 🥀Anna - an ihrem 26. Geburtstag wurde ihr junges Leben ausgelöscht, seit 2017 litt sie an schwerstem fortschreitendem #MECFS 🕊️jetzt ist sie wieder mit Mama und Oma vereint 💔Anna - du fehlst! x.com/mecfsanna
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Erinnert ihr euch an Jonas? Vor drei Jahren hat @martinruecker über seine schwere Erkrankung berichtet. Jetzt hat Jonas’ Vater ein Lied mit Musikvideo für ihn gemacht – und bittet darum, es zu teilen und weiterzutragen. #MECFS
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Now Trudie Chalder says "recovery from CFS" doesn't actually mean absence of symptoms and getting back to regular life but is more about coming to terms with chronic illness. Huh??? virology.ws/2026/04/03/trial…
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Surviving severe or very severe ME/CFS requires strength and resilience that far exceeds the difficulty of anything olympians have trained for — Looking into the abyss each day of one of the most extreme levels of human suffering and deciding to keep fighting. To those who have been battling this for years or decades: you are superhuman. #MECFS #cfs #Olympics2026 #LongCovid
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Maybe I am naive and an idiot, but the pictures of the anti-war protests in Tel Aviv today give me hope that maybe there can be a better future some day in my homeland. A future of justice, equality and peace. Let me hang on to that illusion for today.
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WHY has the world become so complacent about the threat of nuclear war? The danger of ISRAEL using nuclear weapons is very real and the consequences are incalculable
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Tomos is bedbound with Severe #MECFS. His mother says at his worst he looked as if he was “paralysed”, “a dead weight”, unable to open his eyes, talk or move. Clip from BBC Wales Today.
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ME is utterly horrible. I know because I have a moderate version of it (nb. people call it different names - post-viral fatigue, ME). I used to be very fit; I could do tons of press ups, boxed, ran & did gymnastics. Now I have to be careful. The NHS is terrible at diagnosing it. Something I feel quite cross about because you get worse if it's not identified quickly. Also, if you are a very busy person, BE careful. Take relaxation seriously.
Our son loved the outdoors – invisible illness means he now can't walk or talk bbc.in/4sxUCVW
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On behalf of the Christians of the #MiddleEast, and of all women and men of good will, I appeal to those responsible for this conflict: cease fire! May paths of dialogue be reopened! Violence can never lead to the justice, stability and peace for which the peoples are waiting.
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