ahimsa<p>I missed this back when it was first published:</p><p>"The hermeneutical injustice of ME"</p><p><a href="https://www.thereforme.uk/p/the-hermeneutical-injustice-of-me?r=17hcra" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thereforme.uk/p/the-hermeneuti</span><span class="invisible">cal-injustice-of-me?r=17hcra</span></a></p><p>When Words Fail</p><p>"For me, one of the hardest parts of living with ME was the absence of a clear framework for describing and understanding it. The way I had once made sense of my body no longer applied …</p><p>I had no reference points for what I was experiencing."</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> </p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/ThereForME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ThereForME</span></a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAwareness</span></a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a></p>
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#mecfs
14 posts · 12 participants · 0 posts today
Robot Diver<p>My partner is having a mini-vacation this week. She does a lot for me because of the ME. I'm not high spoons today but I wanted to make her a nice vacation breakfast. This is my solution. It's scalable for more than two people as well.</p><p>Heat your oven to 375F. Line a cookie sheet with foil. Leaving space in the middle for potatoes, place breakfast sausage around the edge of the sheet. </p><p>Place some diced potatoes in the centre of the sheet or use some mini potatoes to save spoons. (If they seem a little big to cook in 25 mins, pop them in the microwave for about 5 minutes before adding them to the tray.</p><p>Drizzle everything with a little oil and toss the potatoes with some granulated garlic, salt, pepper or any other spicing you might desire. </p><p>Bake for 25-30mins or until sausage is cooked through and potato is soft. Stir everything halfway through. (This will depend a lot on your oven, mine has a fan, so it may take slightly longer if you don't.)</p><p>You could definitely use vegetarian/vegan sausage for this but I would wait to add it to the edges after the tray has been in the oven for about 10 minutes, as most won't require as long a bake time as the potatoes, but you can check your package directions.</p><p>If you have an extra spoon you can also add some diced onion or peppers. </p><p>Serve with some eggs or straight up. </p><p><a href="https://starlite.rodeo/tags/ouchThatsTasty" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ouchThatsTasty</span></a> <a href="https://starlite.rodeo/tags/lowSpoonRecipes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>lowSpoonRecipes</span></a> <br><a href="https://starlite.rodeo/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://starlite.rodeo/tags/longCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longCovid</span></a> <a href="https://starlite.rodeo/tags/breakfast" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>breakfast</span></a></p>
eMili<p>One frustrating thing about ME/CFS/MCAS is that you never know exactly where some symptoms might come from. Was it meeting many people at once? Was it the food being in the fridge instead of a freezer (hence higher amounts of histamin), or a specific ingredient? Was it because some strong emotion, is it from spring allergies, is it because my histamin levels are currently higher because I did some thing wrong yesterday? Or is it something I did today? </p><p>It kind of feels like trying to stay cool playing a poorly designed puzzlegame while having been forced into an All-In in the poker game of being financially self sufficient, where you have to solve the puzzle to even look at your cards. Naturally your health care provider can walk up any moment to tell you they hid some of the puzzle pieces somewhere. </p><p><a href="https://eldritch.cafe/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://eldritch.cafe/tags/mcas" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mcas</span></a> <a href="https://eldritch.cafe/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a></p>
Kanaillenvogel<p>Chronisch krank — chronisch ignoriert</p><p><a href="https://brandenburg.social/tags/Filmvorstellung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Filmvorstellung</span></a> und Gespräch zum internationalen <a href="https://brandenburg.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://brandenburg.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> Tag</p><p>im <a href="https://brandenburg.social/tags/cineding" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>cineding</span></a> in <a href="https://brandenburg.social/tags/Leipzig" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Leipzig</span></a>, am 12. Mai 19:00 Uhr</p><p>von der <a href="https://brandenburg.social/tags/liegenddemo" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>liegenddemo</span></a> Community Leipzig</p><p><a href="https://brandenburg.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
Chronic Illness Humor Funny<p><a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/autoimmune" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmune</span></a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicallyill</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/chronicillnessmemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnessmemes</span></a> <a href="https://mastodon.social/tags/autoimmunememes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmunememes</span></a> <a href="https://mastodon.social/tags/fibromemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fibromemes</span></a> <a href="https://mastodon.social/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fibromyalgia</span></a> <a href="https://mastodon.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://mastodon.social/tags/fatiguememes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fatiguememes</span></a> <a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/chronicfatiguesyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatiguesyndrome</span></a> <a href="https://mastodon.social/tags/chronicfatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatigue</span></a> <a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://mastodon.social/tags/autoimmunehumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmunehumor</span></a></p>
Maggie Maybe<p>Anyone try Dayvigo for <a href="https://zeroes.ca/tags/insomnia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>insomnia</span></a>? 😂<br>The doctor had me terrified of it. “It’s a controlled substance, but it’s probably OK. It has a 55 hour half life so it may be sadating the next day too.”</p><p>So I was scared. I cut the sleep pill in half. I put a barricade at the end of my hallway so I wouldn’t go down the stairs in my sleep because it warns of sleep eating like people do on Ambien.</p><p>I asked my neighbor if she could please call me when she wakes up if she doesn’t hear any signs of life from me over here and if I don’t answer the phone to please call the landlord so they can tell my emergency contact I’m probably not OK.</p><p>I even picked up my room a little extra before bed just in case paramedics had to come in here to drag my body out.</p><p>SO MUCH DRAMA FOR A MEDICATION THAT ROCKED ME FOR 15 MINUTES.</p><p>It was the weirdest thing, about a half hour after I took it I was like oh wow I get why she warned me I am high as hell. Then 15 minutes later, nothing. I took the second half, felt punched in the head a half hour later, than nothing.</p><p><a href="https://zeroes.ca/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> is literally killing me</p>
Tom Kindlon<p>"I'm 18 and bed bound with long Covid [and ME/CFS]. This is what it's like to be held hostage by your own body"</p><p><a href="https://www.bigissue.com/opinion/long-covid-bed-bound-health-emily-may-stephenson/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">bigissue.com/opinion/long-covi</span><span class="invisible">d-bed-bound-health-emily-may-stephenson/</span></a></p><p>Screenshot is from the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a><br> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/severeme" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>severeme</span></a></span><br><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a></p>
Chronic Illness Humor Funny<p><a href="https://mastodon.social/tags/chronicfatiguesyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatiguesyndrome</span></a> <a href="https://mastodon.social/tags/chronicfatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatigue</span></a> <a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://mastodon.social/tags/autoimmunehumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmunehumor</span></a> <a href="https://mastodon.social/tags/autoimmunememes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmunememes</span></a> <a href="https://mastodon.social/tags/chronicillnessmemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnessmemes</span></a> <a href="https://mastodon.social/tags/tiredaf" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>tiredaf</span></a> <a href="https://mastodon.social/tags/tired" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>tired</span></a> <a href="https://mastodon.social/tags/tiredmemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>tiredmemes</span></a></p>
Chronic Illness Humor Funny<p>Food gives me energy.<br>Haha. Just messing with you.</p><p><a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/chronicfatiguesyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatiguesyndrome</span></a> <a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/Mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Mecfs</span></a> <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/autoimmune" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmune</span></a> <a href="https://mastodon.social/tags/autoimmunehumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmunehumor</span></a></p>
Jay Baker<p>I can confirm that my partner's Long Covid and ME symptoms worsened after this test, also being told by a member of staff "See? You could do it!" when clearly "could" does not at all always mean "should," not by a long shot. <a href="https://thesicktimes.org/2025/04/08/its-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/04/08/it</span><span class="invisible">s-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/</span></a> <a href="https://todon.eu/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://todon.eu/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://todon.eu/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a></p>
Maggie Maybe<p><span class="h-card" translate="no"><a href="https://mstdn.ca/@alessandro" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>alessandro</span></a></span> <span class="h-card" translate="no"><a href="https://mastodon.archive.org/@brewsterkahle" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>brewsterkahle</span></a></span> oh yeah, I’m totally screwed. The only medication in 13 years that has worked for my <a href="https://zeroes.ca/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> is low-dose naltrexone (<a href="https://zeroes.ca/tags/LDN" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LDN</span></a> ).</p><p>I’m not sure if the only place to order the powder from is China or if that’s just where all the Compounding pharmacies buy it because it’s affordable, but it’s not something I can stock up on. It goes bad really fast. </p><p>If I have to go back to being mostly bedbound trust and believe I’m not just going to quietly fall by the wayside. My mother went out quietly, I will not.</p>
ahimsa<p>Here's the latest News in Brief (April 14 - 20), a weekly summary of ME/CFS and Long Covid news from the Science for ME forum:</p><p><a href="https://www.s4me.info/threads/news-in-brief-april-2025.43486/#post-603368" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/news-in-brie</span><span class="invisible">f-april-2025.43486/#post-603368</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> </p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://disabled.social/tags/Science4ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Science4ME</span></a></p>
ahimsa<p>"Myalgic encephalomyelitis/chronic fatigue syndrome cases in England much higher than first projected"</p><p><a href="https://medicalxpress.com/news/2025-04-myalgic-encephalomyelitischronic-fatigue-syndrome-cases.html" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">medicalxpress.com/news/2025-04</span><span class="invisible">-myalgic-encephalomyelitischronic-fatigue-syndrome-cases.html</span></a></p><p>"There are almost two-thirds more people living with ME/CFS in England than previously thought, a study says. The new estimate suggests that approximately 404,000 people are affected by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome), a 62% rise from the previously accepted figure of 250,000."</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/NHS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NHS</span></a> <a href="https://disabled.social/tags/England" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>England</span></a> <a href="https://disabled.social/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a> <a href="https://disabled.social/tags/MedEd" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedEd</span></a></p>
Tom Kindlon<p>The journal Frontiers in Neuroscience has a new topic titled: "Exploring Chronic Fatigue: Neural Correlates, Mechanisms, and Therapeutic Strategies". The manuscript submission deadline is 30 May 2025.</p><p><a href="https://www.frontiersin.org/research-topics/65473/exploring-chronic-fatigue-neural-correlates-mechanisms-and-therapeutic-strategies" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">frontiersin.org/research-topic</span><span class="invisible">s/65473/exploring-chronic-fatigue-neural-correlates-mechanisms-and-therapeutic-strategies</span></a></p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>2/</p><p>“While the underlying mechanisms of this syndrome [Long Covid] remain unclear, scientists know that viral infections often give rise to post-viral syndromes featuring fatigue, “brain fog,” and other non-specific symptoms.”</p><p><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/covid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>covid19</span></a></span> <span class="h-card" translate="no"><a href="https://chirp.social/@novid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>novid@chirp.social</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/novid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>novid@a.gup.pe</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/auscovid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>auscovid19</span></a></span> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Andrew Gifford<p>All day, every day, twice the attendences (visitors & staff) of Glastonbury Festival - some 400,000 people - are being neglected by UK Gov, NICE & NHS.</p><p>We're so ill, yet our medical system underfunds research, wrings its hands re treatments, fails us. We're very ill & too many of us are dying.</p><p><a href="https://www.thetimes.com/uk/healthcare/article/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thetimes.com/uk/healthcare/art</span><span class="invisible">icle/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2</span></a>?</p><p><a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://mastodon.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.social/tags/NHS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NHS</span></a> <a href="https://mastodon.social/tags/NICE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NICE</span></a> <a href="https://mastodon.social/tags/MedicalNeglect" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedicalNeglect</span></a> <a href="https://mastodon.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a> <a href="https://mastodon.social/tags/ThereForeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ThereForeME</span></a> <a href="https://mastodon.social/tags/Medicine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Medicine</span></a></p>
FlotteBiene86<p>„Die hier aufgedeckten fundamentalen Prozesse könnten die Grundlage für neue Behandlungsstrategien schaffen, um Knorpeldegeneration und Skelettalterung im Zusammenhang mit mitochondrialen Dysfunktionen frühzeitig zu beeinflussen“, so Prof. Dr. Bent Brachvogel, verantwortlicher Letztautor der Studie.</p><p><a href="https://www.science.org/doi/10.1126/sciadv.ads1842" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">science.org/doi/10.1126/sciadv</span><span class="invisible">.ads1842</span></a></p><p>Ich frage mich: Ob die Auswirkungen der Dysfunktionalität der <a href="https://nrw.social/tags/Mitochondrien" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Mitochondrien</span></a> auf den Stoffwechsel und den Abbau von Knorpel und Knochen dann auch <a href="https://nrw.social/tags/MeCfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MeCfs</span></a> Erkrankte trifft?</p>
ContraindiKate<p>I'm looking for over-ear passive hearing protection that I can wear in bed. Not earplugs. Something without active noise cancellation, as this makes my tinnitus worse. I've been wearing a giant pair of Mouldex ear muffs which do a great job cutting the noise, but are not so ideal when it comes to comfort. I'm a side sleeper, so something with a slim profile is preferred. <br>Suggestions?</p><p><a href="https://zeroes.ca/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://zeroes.ca/tags/HearingProtection" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HearingProtection</span></a> <a href="https://zeroes.ca/tags/bedbound" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>bedbound</span></a> <a href="https://zeroes.ca/tags/tinnitus" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>tinnitus</span></a></p>
ContraindiKate<p>Ich bin wieder auf der Suche nach passiver Gehörschutz, den ich im Bett tragen kann. Brauche etwas über meine Ohren, ohne aktives Geräuschunterdrückung (weil sie mein Tinnitus noch schlimmer macht). Bin Seitenschläfer, also je schlanker desto besser. <br>Empfehlungen? </p><p><a href="https://wien.rocks/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://wien.rocks/tags/bettlaegerig" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>bettlaegerig</span></a> <a href="https://wien.rocks/tags/gehoerschutz" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>gehoerschutz</span></a> <a href="https://wien.rocks/tags/Schlafen" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Schlafen</span></a> <a href="https://wien.rocks/tags/tinnitus" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>tinnitus</span></a></p>
Tom Kindlon<p>A housing project specifically for people with severe ME/CFS, including 24-hour assistance, is being planned in Neunkirchen-Seelscheid</p><p>Info in German:<br><a href="https://sozialhummel.de/wohnprojekt-fuer-schwer-me-cfs-betroffene-in-neunkirchen-seelscheid-interessenten-gesucht/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">sozialhummel.de/wohnprojekt-fu</span><span class="invisible">er-schwer-me-cfs-betroffene-in-neunkirchen-seelscheid-interessenten-gesucht/</span></a></p><p>Some info & discussion in English<br><a href="https://www.s4me.info/threads/housing-project-for-severely-me-cfs-sufferers-in-neunkirchen-seelscheid-germany-interested-parties-wanted.43639/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/housing-proj</span><span class="invisible">ect-for-severely-me-cfs-sufferers-in-neunkirchen-seelscheid-germany-interested-parties-wanted.43639/</span></a></p><p>Image from latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs_de" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs_de</span></a></span></p>
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