🇬🇧: Severe ME & long covid 🇳🇱: Auteur van 'De achterblijvers' (Uitgeverij De Geus) 🏳️‍🌈https://bsky.app/profile/thisistheillme.bsky.socialhttps://bsky.app/profile/thisistheillme.bsky.social/post/3lunredxc6k2mThe way people -leaders- won't look at Gaza, the same way they refuse to lay eyes on us, let alone help us. And we're all supposed to accept and integrate that into our psyche somehow? How?23 Jul 2025 19:36 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lunredxc6k2mhttps://bsky.app/profile/thisistheillme.bsky.social/post/3lukzq7gdtc2fNot trying off label treatment on severe ME patients equals not believing them imo. ME can be hell. Severe ME is living death. People are dying in rapid succession. Yet fear of side effects and reputational damage prevail. [contains quote post or other embedded content]22 Jul 2025 17:28 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lukzq7gdtc2fhttps://bsky.app/profile/thisistheillme.bsky.social/post/3lijifudnas2iDe CGT en fysiotherapie die Knoop, van der Meer en Rosmalen propageerden heeft bij patiënten tot verbolgenheid geleid. ‘Vele patiënten zijn enorm achteruitgegaan door deze opgelegde methode. Nu de biomedische kant door long covid oprukt, lijkt het of deze wetenschappers plots hun mening nuanceren.’ https://www.groene.nl/artikel/mistig-brein-haperende-spieren?utm_campaign=website&utm_medium=social&utm_source=bluesky19 Feb 2025 09:43 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lijifudnas2ihttps://bsky.app/profile/thisistheillme.bsky.social/post/3lfugul45n22tNot only an important and shocking article. Also props for selecting a great image. I never truely understood the immense value of representation until I became ill (and the standard image of this illness was a pouting girl with head in hand). https://time.com/7206080/long-covid-psychiatric-wards/16 Jan 2025 13:59 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lfugul45n22thttps://bsky.app/profile/thisistheillme.bsky.social/post/3lfp66uejx22gMy cat deposited a craftily murdered, fat pigeon on my doorstep this morning and danced and sang in circles around my bed until I got up to look at my prize. It's the ONLY thing I don't like about living with a cat.14 Jan 2025 11:41 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lfp66uejx22ghttps://bsky.app/profile/thisistheillme.bsky.social/post/3lfmhzseoys23PAIS community! I need your knowledge. You don't have tachycardia but you do get unwell when getting upright. So OI without tachycardia. Question: can beta blockers cause OI type symptoms by preventing hart from working harder to pump blood to brain? #longcovid #mecfs #pots13 Jan 2025 09:59 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lfmhzseoys23https://bsky.app/profile/thisistheillme.bsky.social/post/3lfc3ld2pw22uJust the thought of having to evacuate with my disability (severe PEM) is so frightening. My thoughts go out to everyone in this position in California right now.09 Jan 2025 06:49 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lfc3ld2pw22uhttps://bsky.app/profile/thisistheillme.bsky.social/post/3lf7tfsmhl227When you have severe ME, it's quite depressing to have the most ambitious new years resolutions, but non of them involve better pacing and more rest. #longcovid08 Jan 2025 09:18 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lf7tfsmhl227https://bsky.app/profile/thisistheillme.bsky.social/post/3lf5ycwftbk2vMy current mindset and illness believes. #longcovid #mecfs07 Jan 2025 15:40 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lf5ycwftbk2vhttps://bsky.app/profile/thisistheillme.bsky.social/post/3leyie4l4e22hIk wacht al 13 maanden op een eerlijke beoordeling. Hoe ik in de tussentijd mijn huur betaal is geen zorg van het UWV. [contains quote post or other embedded content]05 Jan 2025 11:11 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3leyie4l4e22hhttps://bsky.app/profile/thisistheillme.bsky.social/post/3leyg4rf6vs2hA world that looks away from Gaza is psychotic imo. And it should not surprise us that the same majority is not caring much about people with #longcovid either. As long as they made it out of the pandemic okay, and as long they don't have to fear bombs and gunfire themselves.05 Jan 2025 10:31 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3leyg4rf6vs2hhttps://bsky.app/profile/thisistheillme.bsky.social/post/3leyfuvdnas2hI wish people cared a lot more about our physical than our mental health. #longcovid05 Jan 2025 10:27 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3leyfuvdnas2hhttps://bsky.app/profile/thisistheillme.bsky.social/post/3lew3htpa3s2bThinking of 3 years ago, when I laced up my runners for interval training right after mild covid. Raising my HR to the max. I did that 3 days a week without problems until I suddenly collapsed and I've been bedridden ever since. I wish I'd known where I was running myself into. #longcovid04 Jan 2025 12:15 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lew3htpa3s2bhttps://bsky.app/profile/thisistheillme.bsky.social/post/3levyem3c7c2bLeaving Twitter for real. Can't enable that democracy ruining egomaniacs platform anymore. I'll try to post more here and really give it a go!04 Jan 2025 11:20 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3levyem3c7c2bhttps://bsky.app/profile/thisistheillme.bsky.social/post/3lcn3sfofvk2iBeen taking low dose rapamycine for 4 full weeks now. Haven't finished the experiment but 3 things so far stand out: 1/06 Dec 2024 11:37 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lcn3sfofvk2ihttps://bsky.app/profile/thisistheillme.bsky.social/post/3lcijoxtmks24Jongens, ik weet dat we allemaal voor pampus liggen en je misschien denkt 'heeft toch geen zin'. Maar dit zijn de momenten waarop we van ons moeten laten horen als we kans willen maken op betere zorg en behandeling willen in Nederland. Vandaag nog laatste kans! [contains quote post or other embedded content]04 Dec 2024 16:02 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lcijoxtmks24https://bsky.app/profile/thisistheillme.bsky.social/post/3lc5jtqm67c26'De helft van de patiënten krijgt van zijn omgeving (soms) het gevoel zijn klachten te overdrijven.' @FloorRusman https://www.nrc.nl/nieuws/2024/11/29/ook-postcovid-verdient-een-bloemetje-a487498730 Nov 2024 07:06 +0000at://did:plc:ur52fnngo2xfetzxfler5joi/app.bsky.feed.post/3lc5jtqm67c26