#multiplesclerosis — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #multiplesclerosis, aggregated by home.social.
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If something is hard, that is a sign it is worth doing👍
Or that it is not worth even considering👎
It depends.Asking a Lot, Trusting a Little: The Nutrition Doc and the Informed Patient
https://butterbei.de/en/posts/asking-a-lot-trusting-a-little-informed-patient/
#nutrition #food #Ketosis #Keto #MS #multiplesclerosis -
If something is hard, that is a sign it is worth doing👍
Or that it is not worth even considering👎
It depends.Asking a Lot, Trusting a Little: The Nutrition Doc and the Informed Patient
https://butterbei.de/en/posts/asking-a-lot-trusting-a-little-informed-patient/
#nutrition #food #Ketosis #Keto #MS #multiplesclerosis -
German nutrition doc Riedl earns both praise and criticism for a single podcast episode: Giving up wheat even without coeliac disease👍; Double standards on nutrition studies👎.
Eating with Two Yardsticks: The Nutrition Doc's Burden of Proof
https://butterbei.de/en/posts/eating-with-two-yardsticks-burden-of-proof-nutrition-doc/
#nutrition #food #Ketosis #Keto #ms #multiplesclerosis #edocs #science -
German nutrition doc Riedl earns both praise and criticism for a single podcast episode: Giving up wheat even without coeliac disease👍; Double standards on nutrition studies👎.
Eating with Two Yardsticks: The Nutrition Doc's Burden of Proof
https://butterbei.de/en/posts/eating-with-two-yardsticks-burden-of-proof-nutrition-doc/
#nutrition #food #Ketosis #Keto #ms #multiplesclerosis #edocs #science -
Human Centipede director Tom Six reveals multiple sclerosis diagnosis in ‘final film’
By Philip Oltermann European culture editorThe Dutch creator of the controversial trilogy set to detail struggles with neurological disease in homemade documentary, after spending six years ‘as a recluse’
#Film #Culture #Documentaryfilms #Multiplesclerosis #TheGuardian #PhilipOltermannEuropeancultureeditor
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Human Centipede director Tom Six reveals multiple sclerosis diagnosis in ‘final film’
By Philip Oltermann European culture editorThe Dutch creator of the controversial trilogy set to detail struggles with neurological disease in homemade documentary, after spending six years ‘as a recluse’
#Film #Culture #Documentaryfilms #Multiplesclerosis #TheGuardian #PhilipOltermannEuropeancultureeditor
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And here’s some pictures of my now concluded running career.
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And here’s some pictures of my now concluded running career.
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Reluctantly concluding that I can’t really run anymore. The physical strain on my body is just too much as the #MS related weakness means I’m basically dragging one half of my body around rather than really running. Perhaps this should have been obvious years ago and I’m just unusually stubborn, but here it is and I’m having to adjust to losing something that’s been a huge part of my life.
Oh well. Onward. I took up rowing a few years back as this day was always likely to come. My legs are getting significantly worse at the moment, as is my balance, but I’ll try to take whatever comes in my stride and keep buggering on.
Honestly, what other choice is there?
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Reluctantly concluding that I can’t really run anymore. The physical strain on my body is just too much as the #MS related weakness means I’m basically dragging one half of my body around rather than really running. Perhaps this should have been obvious years ago and I’m just unusually stubborn, but here it is and I’m having to adjust to losing something that’s been a huge part of my life.
Oh well. Onward. I took up rowing a few years back as this day was always likely to come. My legs are getting significantly worse at the moment, as is my balance, but I’ll try to take whatever comes in my stride and keep buggering on.
Honestly, what other choice is there?
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Welp. Here’s to day one of hormone replacement therapy. May I never have a week like last week again. #MS #perimenopause #multipleSclerosis
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Welp. Here’s to day one of hormone replacement therapy. May I never have a week like last week again. #MS #perimenopause #multipleSclerosis
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Blood work completed today and a prescription coming in a few days. Looks like my medical team is listening! I love it. #MS #multipleSclerosis
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Blood work completed today and a prescription coming in a few days. Looks like my medical team is listening! I love it. #MS #multipleSclerosis
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CW: Burnout recovery, positive
A lot to celebrate at the moment.
- I've been out of bed for most of the day for a good few weeks
- I've been writing, singing, cooking, fermenting
- My last two crashes were short and self-limiting, rather than kicking off a vicious cycle of overexertion
- I still can't imagine much of a future for myself, but I feel like I'm in touch with the inner resources that will get me to whatever comes nextHonestly, Week of Patching and Old Computer Challenge both did me a huge amount of good. It meant a lot to have a space where I can tinker with purpose, without demand.
The last few days have been really great thanks to the wheelchair, though I had to stay in on Sunday due to a crash (of the bodymind, not the chair!). Compression socks, electrolytes, and dietary changes have also been important in managing the cardiovascular stuff, and I think I'm benefitting from an increase in my medical cannabis dose. Tomorrow I have another attempt at getting my GP to prescribe beta blockers - I'm still really hoping this could turn things around decisively, but I do seem to be improving regardless.
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CW: Burnout recovery, positive
A lot to celebrate at the moment.
- I've been out of bed for most of the day for a good few weeks
- I've been writing, singing, cooking, fermenting
- My last two crashes were short and self-limiting, rather than kicking off a vicious cycle of overexertion
- I still can't imagine much of a future for myself, but I feel like I'm in touch with the inner resources that will get me to whatever comes nextHonestly, Week of Patching and Old Computer Challenge both did me a huge amount of good. It meant a lot to have a space where I can tinker with purpose, without demand.
The last few days have been really great thanks to the wheelchair, though I had to stay in on Sunday due to a crash (of the bodymind, not the chair!). Compression socks, electrolytes, and dietary changes have also been important in managing the cardiovascular stuff, and I think I'm benefitting from an increase in my medical cannabis dose. Tomorrow I have another attempt at getting my GP to prescribe beta blockers - I'm still really hoping this could turn things around decisively, but I do seem to be improving regardless.
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Good morning, dear fellow travellers through the twists and turns of (world) politics 🌹❤️☕. I wonder what Mr Smithers would say about such costs for an early retiree who’s unfit for work? And then something like this! 😇✊ (a German joke for the new Health Minister
#multiplesklerose #multiplesclerosis Guten Morgen liebe Mitreisende durch die verknorksten Windungen der (Welt-)Politik 🌹❤️☕. Was wohl Mr. Smithers zu solchen Kosten für einen arbeitsunfähigen Frührentner sagt? Und dann so etwas! 😇✊
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Good morning, dear fellow travellers through the twists and turns of (world) politics 🌹❤️☕. I wonder what Mr Smithers would say about such costs for an early retiree who’s unfit for work? And then something like this! 😇✊ (a German joke for the new Health Minister
#multiplesklerose #multiplesclerosis Guten Morgen liebe Mitreisende durch die verknorksten Windungen der (Welt-)Politik 🌹❤️☕. Was wohl Mr. Smithers zu solchen Kosten für einen arbeitsunfähigen Frührentner sagt? Und dann so etwas! 😇✊
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Ocrelizumab: Ein Funke Hoffnung bei schwerer #MS - DocCheck
Wer denkt, bei fortgeschrittener MS kann nichts mehr getan werden, täuscht sich. Denn auch vermeintlich ausweglosen Fällen könnte geholfen werden – mithilfe eines alten Bekannten.
https://www.doccheck.com/de/detail/articles/53749-ocrelizumab-ein-funke-hoffnung-bei-schwerer-ms #MultipleSklerose #MultipleSclerosis -
Ocrelizumab: Ein Funke Hoffnung bei schwerer #MS - DocCheck
Wer denkt, bei fortgeschrittener MS kann nichts mehr getan werden, täuscht sich. Denn auch vermeintlich ausweglosen Fällen könnte geholfen werden – mithilfe eines alten Bekannten.
https://www.doccheck.com/de/detail/articles/53749-ocrelizumab-ein-funke-hoffnung-bei-schwerer-ms #MultipleSklerose #MultipleSclerosis -
Middle stage of SM? Leg's muscles pain and lacking words aka brain fog. Oh, and quick being tired.
Dunno if "middle".
#multiplesclerosis #fuckms -
Bub – living an artist’s dreams and dreads in New York
By Nicole CarpenterAn autobiographical game about the devastating effects of chronic illness on an artist’s creative life gives players the chance slow the pace right down
https://www.theguardian.com/games/2026/jul/21/bub-autobiographical-game-new-york-artist
#Games #Art #Autobiographyandmemoir #PC #Multiplesclerosis #TheGuardian #NicoleCarpenter
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Bub – living an artist’s dreams and dreads in New York https://www.theguardian.com/games/2026/jul/21/bub-autobiographical-game-new-york-artist #Games #Art #AutobiographyAndMemoir #Pc #MultipleSclerosis
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Bub – living an artist’s dreams and dreads in New York https://www.theguardian.com/games/2026/jul/21/bub-autobiographical-game-new-york-artist #Games #Art #AutobiographyAndMemoir #Pc #MultipleSclerosis
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I may have a disability (MS/Multiple Sclerosis) but i was able to lift my hed by myself and change the overall cover of my bed with the usual help without falling on the floor! Just goes to show when you put your mind to it, any disability can be overcome, either by using your brain to surpass what people think is impossible or by creating a different solution. 🫶 #disability #disabilityawareness #multiplesclerosis
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I may have a disability (MS/Multiple Sclerosis) but i was able to lift my hed by myself and change the overall cover of my bed with the usual help without falling on the floor! Just goes to show when you put your mind to it, any disability can be overcome, either by using your brain to surpass what people think is impossible or by creating a different solution. 🫶 #disability #disabilityawareness #multiplesclerosis
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Effectiveness of Coenzyme Q10 Supplementation for Reducing Fatigue: A Systematic Review and Meta-Analysis of Randomized Controlled Trials [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9449413/#fatigue #MECFS #fibrolmyalgia #MultipleSclerosis #HeartFailure #cancer #CoQ10 #supplements
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Effectiveness of Coenzyme Q10 Supplementation for Reducing Fatigue: A Systematic Review and Meta-Analysis of Randomized Controlled Trials [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9449413/#fatigue #MECFS #fibrolmyalgia #MultipleSclerosis #HeartFailure #cancer #CoQ10 #supplements
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𝗪𝗮𝘆𝘄𝗼𝗿𝗱𝘀 𝗥𝗲𝗮𝗱𝗶𝗻𝗴 𝗟𝗲𝗱𝗴𝗲𝗿: "𝗦𝗼 𝗟𝘂𝗰𝗸𝘆" 𝗯𝘆 𝗡𝗶𝗰𝗼𝗹𝗮 𝗚𝗿𝗶𝗳𝗳𝗶𝘁𝗵 -
𝟯-𝗪𝗼𝗿𝗱 𝗥𝗲𝘃𝗶𝗲𝘄:
Grounding
Stressful
Autofiction𝗙𝗿𝗶𝗰𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗼𝘀𝘁𝘂𝗿𝗲:
How does Griffith's merging of fact and fiction affect the telling of truths about disability?
#bookreview #bookrecommendations #literature #books #book #reading #frictionalreading #nicolagriffith #solucky #autobiographicalnovel #autofiction #disability #disabilityawareness #multiplesclerosis
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𝗪𝗮𝘆𝘄𝗼𝗿𝗱𝘀 𝗥𝗲𝗮𝗱𝗶𝗻𝗴 𝗟𝗲𝗱𝗴𝗲𝗿: "𝗦𝗼 𝗟𝘂𝗰𝗸𝘆" 𝗯𝘆 𝗡𝗶𝗰𝗼𝗹𝗮 𝗚𝗿𝗶𝗳𝗳𝗶𝘁𝗵 -
𝟯-𝗪𝗼𝗿𝗱 𝗥𝗲𝘃𝗶𝗲𝘄:
Grounding
Stressful
Autofiction𝗙𝗿𝗶𝗰𝘁𝗶𝗼𝗻𝗮𝗹 𝗣𝗼𝘀𝘁𝘂𝗿𝗲:
How does Griffith's merging of fact and fiction affect the telling of truths about disability?
#bookreview #bookrecommendations #literature #books #book #reading #frictionalreading #nicolagriffith #solucky #autobiographicalnovel #autofiction #disability #disabilityawareness #multiplesclerosis
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Remember the MS Readathon? Australia, it's on again this August! And anyone can be in it!
https://www.msreadathon.org.au/
#Multiplesclerosis #MSReadathon #Books #Reading #Bookstadon #Charity #Australia #MS
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Remember the MS Readathon? Australia, it's on again this August! And anyone can be in it!
https://www.msreadathon.org.au/
#Multiplesclerosis #MSReadathon #Books #Reading #Bookstadon #Charity #Australia #MS
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Research into 🌱 😀 👯 #cannabis and #multiplesclerosis ( #MS) is ongoing, but available #evidence suggests that #cannabisbasedtherapies may help ease certain symptoms of the #disease, particularly muscle tightness and #pain. ♿ 🌱 🙏
https://multiplesclerosisnewstoday.com/cannabis-and-ms/
https://www.dmsg.de/news/detailansicht/cannabishaltige-medikamente-in-der-therapie-der-multiple-sklerose
https://www.multiplesklerose.ch/PDF/de/Infoblaetter/01_Medizinische_und_therapeutische_Fragen/MS-Info_Cannabis-Therapie_bei_MS.pdf
https://www.gruenhorn.de/blog/medizinisches-cannabis-bei-multipler-sklerose#Hanfwissen #Gesundheit #MultipleSklerose #Autoimmunerkrankungen #Endocannabinoidsystem #Hanfmedizin #Hanf_heilt #Wissenschaft #Forschung #Hanf #hemp #marijuana #Marihuana
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Life-changing MS drugs to stay on the PBS. So why are others under threat – and how is Trump involved?
By Melissa Davey and Tom McIlroyHealth minister Mark Butler confirms Ocrevus, Kesimpta and Lemtrada will stay subsidised amid questions about the Pharmaceutical Benefits Scheme
#Health #Multiplesclerosis #Pharmaceuticalsindustry #MarkButler #DonaldTrump #Australianpolitics #Business #Business #Australianews #TheGuardian #MelissaDavey #TomMcIlroy
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MS patients given PBS lifeline amid drug pricing dispute
By Clare ArmstrongHealth Minister Mark Butler has accepted independent advice for a rapid review of MS drugs to ensure they remain available on the PBS.
https://www.abc.net.au/news/2026-07-16/ms-patients-given-pbs-lifeline/106925112
#MultipleSclerosis #Pharmaceuticals #Health #FederalGovernment #PharmaceuticalIndustry #ClareArmstrong
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MS patients given PBS lifeline amid drug pricing dispute
By Clare ArmstrongHealth Minister Mark Butler has accepted independent advice for a rapid review of MS drugs to ensure they remain available on the PBS.
https://www.abc.net.au/news/2026-07-16/ms-patients-given-pbs-lifeline/106925112
#MultipleSclerosis #Pharmaceuticals #Health #FederalGovernment #PharmaceuticalIndustry #ClareArmstrong
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Low levels of replicating Epstein-Barr viruses might be the main driver of the autoimmune condition multiple sclerosis. This may mean that targeting them would be as effective as suppressing the… #science #multiplesclerosis #antivirals
Posted into FLIPBOARD EXCHANGE FEED 🗞️ @flipboard-exchange-feed-Econopass
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Yes. It’s a thing.
Godammit. -
Yes. It’s a thing.
Godammit. -
My left ankle has lost a lot of dorsiflexion over the years and I don’t pick it up very well as I’ve lost a lot of muscle strength in that leg. Just recently, it’s been quite locked up too. Is that a thing with #MS ?
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My left ankle has lost a lot of dorsiflexion over the years and I don’t pick it up very well as I’ve lost a lot of muscle strength in that leg. Just recently, it’s been quite locked up too. Is that a thing with #MS ?
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RE: https://mastodon.social/@Karl_Theodor/116177361602193505
«Ich will in die 🌐 Welt 🔊 schreien, wie unglaublich wirksam 🌱 #Cannabis ist.» - 👩🦼➡️ Vera 💔
✍️ lesen: ➡️ 👯 https://www.medcan.ch/ueber-uns/unsere-geschichten/vera
#Wissenschaft #science #Studie #Demokratie #Medizin #Politik #Merz #Söder #Bas #Schwerdtner #Klingbeil #ThorstenFrei #Reiche #Kulturkampf #Klimaschutz #WEEDMoB #Hanfgeschichten #hanf #hemp #marijuana #Gesundheit #CanG #SPD #CSU #CDU #DIELINKE #FDP #GRÜNE #MultipleSklerose #multiplesclerosis #Schweiz #Medcan #cop31 #Omasgegenrechts #bullshitbingo #Bundesregierung
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RE: https://mastodon.social/@Karl_Theodor/116177361602193505
«Ich will in die 🌐 Welt 🔊 schreien, wie unglaublich wirksam 🌱 #Cannabis ist.» - 👩🦼➡️ Vera 💔
✍️ lesen: ➡️ 👯 https://www.medcan.ch/ueber-uns/unsere-geschichten/vera
#Wissenschaft #science #Studie #Demokratie #Medizin #Politik #Merz #Söder #Bas #Schwerdtner #Klingbeil #ThorstenFrei #Reiche #Kulturkampf #Klimaschutz #WEEDMoB #Hanfgeschichten #hanf #hemp #marijuana #Gesundheit #CanG #SPD #CSU #CDU #DIELINKE #FDP #GRÜNE #MultipleSklerose #multiplesclerosis #Schweiz #Medcan #cop31 #Omasgegenrechts #bullshitbingo #Bundesregierung
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I have over 29k open-access PDF articles right next to me. Properly indexed and named. They represent 5 years of all the #MultipleSclerosis research. Imagine if the cure is hiding in this box, and I'm too stupid to know how to open it. If anyone wants a crack at it, I'm happy to share. #datamining #ai #openscience
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Groggy with numb hands and arms today. Good times.
