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#meawarenesshour CN Suizid Allein die Tatsache, dass es f眉r #pwME einfacher ist sich umzubringen, als medizinische Hilfe / wirksame Mittel zu bekommen oder gar einfacher ist Sterbehilfe als ein Medikament zu bekommen, ist mehr als bedr眉ckend und ein absoluter Skandal!
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Adding @patientled @itsbodypolitic for ideas re motor dysfunctions in #pwme #pwlc (see thread above). 馃檹
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Dr Peter Dilworth 馃挋 #Woke #GTTO 馃樂 retweeted
Medical superstition in Australia: How are you meant to access medical care when your practitioners won鈥檛 name the disease because they鈥檙e so fearful that they鈥檙e enabling you? #StopTheHarm #Auspol #LongCovid #LongCovidAus #pwME #pwLC
There is a strong belief with Australian health practitioners that even *mentioning* a diagnosis can magically *cause* a disease. Now, they鈥檝e put it in writing to the government about #LongCovid!! It鈥檚 embarrassing as a nation, it鈥檚 incorrect and extremely harmful. #StopTheHarm
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Kate Martinson 馃挋 retweeted
"Surgery results in an impaired immune response in the early postoperative period" Is this perhaps one reason why surgery can trigger ME in some people or exacerbate it? I guess there's been little research done on this alongside other triggers? #pwME jamanetwork.com/journals/jam鈥
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Kags 鉂 馃樂 #LongVZV #pwME 馃彺鬆仹鬆仮鬆伋鬆仯鬆伌鬆伩 retweeted
Let me put it another way. Are there any trials (or access to testing) planned for #pwME (and vax injured) in 馃彺鬆仹鬆仮鬆伋鬆仯鬆伌鬆伩 or anywhere in the 馃嚞馃嚙 for those of us who can't travel to Germany? If 80% of pwME have microclots it would be nice to be included in the conversation. 馃檹
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Todd Davenport retweeted
A thing that鈥檚 frustrating about having a chronic illness is that people think that by meeting you 鈥渉alf way鈥 that they are being equitable. But if it鈥檚 10x harder for me to get to the middle-point than it is for you, is that really 鈥渕eeting in the middle鈥? #PWME #MECFS #NEISVoid
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Marilyn Gavranovic retweeted
"5 Tips for People New to Disability Advocacy" 1. Stay humble. 鈥嬧 2. Acknowledge truth. 3. Listen to the wisdom of the disability community. 4. Let go of what you need to. 5. Find solidarity. 馃挋馃馃挋 #LongCovid #MEcfs #pwME themighty.com/topic/chronic-鈥
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Marilyn Gavranovic retweeted
Hello darkness, my old friend I've come to talk with you again Because I got my calculations wrong And I was active for too long And the symptoms embedded in my brain Are designed to cause me pain So here I am In this room of silence #MECFS #PWME #MEAwarenessHour
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Lizzie retweeted
Topic: #LongCovid severe endothelial damage A question for #PwLC #PwME #teamclots: I believe triple therapy and fibrinolytic enzymes are for treating microclots/platelets but does anyone know if they are also for endothelial damage or are there other treatments for that? Thanks
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27okt2022,Ingrid B. Helland Den Nasjonal kompetansetjeneste for CFS/ME Norwegian National Advisory Unit on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis 馃敻 Ensidig 馃敻 IKKE Faglig Objektiv 馃敻 Bryter forskrift lovdata.no/dokument/SF/forsk鈥 @helse_og_omsorg @Helsedir #MEcfs #PwME
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chameleon boi retweeted
peeps with LongCovid and #pwME: what should the health system provide when treating us, how can they accomodate our needs and what are these? Peeps mit LC und ME: Was sollten 脛rzt*innen, Theras und Pflegende bereitstellen, wenn sie mit uns tun haben? Welche Bed眉rfnisse habt ihr?
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The amount of unsolicited advice #pwME get on twitter is wild. I've just seen a MEep describe how crap they're feeling and someone suggest eating more potatoes.
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Resting this morning ahead of a trip to cardiology this afternoon to be fitted with a 24 hour heart monitor to investigate palpations I've been having. This is a new symptom in the last few weeks. #MECFS #pwME