longcovid

<p>Direct aid for disabled comrade.<br>Recaudación de fondos para camarada discapacitado.</p><p>Hola, me llamo Demian, soy discapacitado con Crohn, endometriosis y Long COVID. tengo desnutrición severa y el Long COVID me ha dejado más discapacitado que nunca. Necesito ayuda para pagar los medicamentos y taxis que necesito para ir al médico al no poder apenas caminar por el Long COVID. </p><p>Hi, my name is Demian. I&#x27;m disabled with Crohn&#x27;s disease, endometriosis, and Long COVID. I have severe malnutrition, and Long COVID has left me more disabled than ever. I need help paying for the medication and taxis I need to get to the doctor since I can barely walk due to Long COVID. linktr.ee camaradademian </p><p><a href="/tags/mutualaid/" rel="tag">#mutualaid</a> <a href="/tags/disabilityjustice/" rel="tag">#disabilityjustice</a> <a href="/tags/longcovid/" rel="tag">#longcovid</a> <a href="/tags/yallmasking/" rel="tag">#yallmasking</a> <a href="/tags/covidisnotover/" rel="tag">#covidisnotover</a> @mutualaid @disability </p><p><a href="https://linktr.ee/camaradademian" rel="nofollow"><span class="invisible">https://</span>linktr.ee/camaradademian</a></p>

<p>🚨 On May 12, International ME Awareness Day, <a href="/tags/meaction/" rel="tag">#MEAction</a> will be sending out an SOS for ME/CFS and Long Covid 🚨</p><p>SOS = Save our support systems. Save our science. Save our society.</p><p>A protest will be held at the Capitol in Washington, DC, and folks can also join in from home</p><p><a href="/tags/meaction/" rel="tag">#MEAction</a> encourages all folks with disabilities to join!</p><p>More details / toolkits here:</p><p><a href="https://www.meactions.org/millionsmissing2025" rel="nofollow" class="ellipsis" title="www.meactions.org/millionsmissing2025"><span class="invisible">https://</span><span class="ellipsis">www.meactions.org/millionsmiss</span><span class="invisible">ing2025</span></a></p><p>Please boost! ❤️</p><p>@mecfs @longcovid <br>@disability </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/millionsmissing/" rel="tag">#MillionsMissing</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/meawareness/" rel="tag">#MEAwareness</a> <a href="/tags/disability/" rel="tag">#Disability</a></p>

<p>🗣️ Help us send out a strong SOS message on May 12th, International ME/CFS Awareness Day</p><p>This video from Laurie Jones, executive director of <a href="/tags/meaction/" rel="tag">#MEAction</a>, invites you to join our protest in Washington, DC, or online</p><p>Please join us - we need as many folks as possible! </p><p>More details here:</p><p><a href="https://www.meactions.org/millionsmissing2025" rel="nofollow" class="ellipsis" title="www.meactions.org/millionsmissing2025"><span class="invisible">https://</span><span class="ellipsis">www.meactions.org/millionsmiss</span><span class="invisible">ing2025</span></a></p><p>Thank you! ❤️</p><p>(see replies for full text of the video)</p><p>@mecfs <br>@longcovid <br>@disability </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/pwlc/" rel="tag">#PwLC</a> <a href="/tags/disability/" rel="tag">#Disability</a> <a href="/tags/millionsmissing/" rel="tag">#MillionsMissing</a> <a href="/tags/meawareness/" rel="tag">#MEAwareness</a></p>

<p>🚨 Call to action! 🚨</p><p><a href="/tags/meaction/" rel="tag">#MEAction</a> has written a letter to NIH demanding full funding for the ME/CFS Research Roadmap</p><p>And they&#x27;ve asked folks to sign on to this letter:</p><p><a href="https://airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form" rel="nofollow" class="ellipsis" title="airtable.com/appEwdLZCdtR0xwuv/pagMvv9RZYLxZiDFe/form"><span class="invisible">https://</span><span class="ellipsis">airtable.com/appEwdLZCdtR0xwuv</span><span class="invisible">/pagMvv9RZYLxZiDFe/form</span></a></p><p>From the letter: </p><p>&quot;NIH budget for ME/CFS is $13 million for fiscal year 2024/25– the lowest in comparison to its disease burden of any disease monitored by NIH&quot;</p><p>Even if you don&#x27;t sign please boost 🙏</p><p>Thank you! ❤️</p><p>@mecfs @longcovid </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/neisvoid/" rel="tag">#NEISVoid</a> <a href="/tags/chronicillness/" rel="tag">#ChronicIllness</a> <a href="/tags/disability/" rel="tag">#Disability</a></p>

<p>💙 It&#x27;s May 12th, International ME/CFS Awareness Day 💙</p><p>My ME/CFS onset was in Jan 1990<br> <br>🚨 Many recent ME/CFS cases have been triggered by COVID 🚨</p><p>In this thread I plan to post about 3 main things:</p><p>1. My ME/CFS story (briefly)</p><p>2. Helpful resources for patients and clinicians</p><p>3. Advocacy options for patients &amp; allies (friends/family) - mostly US based</p><p>1/n</p><p>@mecfs @longcovid </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/postcovid/" rel="tag">#PostCovid</a> <a href="/tags/disability/" rel="tag">#Disability</a> <a href="/tags/disabilitysos/" rel="tag">#DisabilitySOS</a> <a href="/tags/covidisnotover/" rel="tag">#CovidIsNotOver</a> <a href="/tags/millionsmissing/" rel="tag">#MillionsMissing</a> <a href="/tags/meawareness/" rel="tag">#MEAwareness</a> <a href="/tags/worldmeday/" rel="tag">#WorldMEDay</a></p>

<p>🧵 &quot;Two Households, Both Alike in Indignity: An Interview with Anne Ursu&quot;</p><p><a href="https://lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/" rel="nofollow" class="ellipsis" title="lithub.com/two-households-both-alike-in-indignity-an-interview-with-anne-ursu/"><span class="invisible">https://</span><span class="ellipsis">lithub.com/two-households-both</span><span class="invisible">-alike-in-indignity-an-interview-with-anne-ursu/</span></a></p><p>Anne Ursu is the author of Not Quite a Ghost, a middle grade novel about &quot;an eleven-year-old, Violet, who comes down with a post-viral illness&quot;</p><p>I&#x27;ll post a few quotes in the replies.</p><p>1/n</p><p>@mecfs @longcovid </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/pwlc/" rel="tag">#PwLC</a> <a href="/tags/chronicillness/" rel="tag">#ChronicIllness</a> <a href="/tags/postcovid/" rel="tag">#PostCovid</a> <a href="/tags/postviral/" rel="tag">#PostViral</a> <a href="/tags/meded/" rel="tag">#MedEd</a></p>

<p>si eres activista deberías llevar mascarilla </p><p>me gustaría que pienses en cuáles eran las razones por las que utilizabas mascarilla estos últimos años y que es lo que te ha hecho el dejar de utilizarla</p><p>seguramente ni siquiera hubo un punto donde realmente te preguntaste si era completamente seguro dejar de utilizarla, sino que simplemente seguiste con la normalidad impuesta por el estado</p><p>a lo mejor te hiciste en algún momento alguna pregunta, pero no pudiste acceder a realmente información verificable sobre el daño que se hace cuando se normalizan y banalizan infecciones</p><p>· El 50% de las infecciones son asintomáticos.<br>· Mínimo 10% de las infecciones acaban en COVID persistente.<br>· Las reinfecciones nos destrozan.<br>· El COVID se propaga y mueve como el humo de un cigarro, piensa en las personas de tu alrededor y en ti como personas que están todo el día fumando, se hace más visual entender cómo se mueve el COVID.<br>· En las infecciones con síntomas se tarda un par de días en dar los síntomas lo que quiere decir que estás por lo menos un par de días infectando sin saberlo.<br>· Las vacunas no son suficientes y además, no las están actualizando en base a las nuevas variantes. Los niveles de anticuerpos producidos disminuyen significativamente en los meses posteriores a la vacunación. Las vacunas no están evitando reinfecciones, ni el contagio, ni las secuelas persistentes del COVID.<br>· Eres infeccioso de COVID por lo menos 10 días.<br>· Desde el comienzo de la pandemia ha habido una gran propaganda en torno a la normalización de la enfermedad y una forma meritocrática de entender la inmunidad (el mejor es que nunca se verá afectado, el débil es que ‘tendrá que morir’ por la prosperidad).</p><p><a href="https://comunistadisca.substack.com/p/activista-que-no-usa-mascarilla-o" rel="nofollow" class="ellipsis" title="comunistadisca.substack.com/p/activista-que-no-usa-mascarilla-o"><span class="invisible">https://</span><span class="ellipsis">comunistadisca.substack.com/p/</span><span class="invisible">activista-que-no-usa-mascarilla-o</span></a></p><p><a href="/tags/covidpersistente/" rel="tag">#CovidPersistente</a> <a href="/tags/llevamascarilla/" rel="tag">#LlevaMascarilla</a> <a href="/tags/realistacovid/" rel="tag">#RealistaCovid</a> <a href="/tags/autodefensasanitaria/" rel="tag">#AutoDefensaSanitaria</a> <a href="/tags/covidsonaerosoles/" rel="tag">#CovidSonAerosoles</a> <a href="/tags/birdflu/" rel="tag">#birdflu</a> <a href="/tags/gripeaviar/" rel="tag">#gripeaviar</a> <br><a href="/tags/maskup/" rel="tag">#MaskUp</a> <a href="/tags/wearamask/" rel="tag">#WearAMask</a> <a href="/tags/covidrealist/" rel="tag">#CovidRealist</a> <a href="/tags/covidisairbone/" rel="tag">#CovidIsAirbone</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a></p>

<p>Artikel behandelopties PostCovid netwerk Nederland <br><a href="https://www.postcovidnl.nl/nieuws/pcnn-post-covid-behandelopties-voor-specifieke-klachten" rel="nofollow" class="ellipsis" title="www.postcovidnl.nl/nieuws/pcnn-post-covid-behandelopties-voor-specifieke-klachten"><span class="invisible">https://</span><span class="ellipsis">www.postcovidnl.nl/nieuws/pcnn</span><span class="invisible">-post-covid-behandelopties-voor-specifieke-klachten</span></a></p><p>Info voor professionals en patiënten C-support - Nl talig<br><a href="https://www.c-support.nu/" rel="nofollow"><span class="invisible">https://</span>www.c-support.nu/</a></p><p>Info NL patientenorganisaties<br><a href="https://longcovidnederland.com/" rel="nofollow"><span class="invisible">https://</span>longcovidnederland.com/</a><br><a href="https://mecvs.nl/" rel="nofollow"><span class="invisible">https://</span>mecvs.nl/</a></p><p>Info Nederlands LC onderzoek<br><a href="https://www.stichtinglongcovid.nl/" rel="nofollow"><span class="invisible">https://</span>www.stichtinglongcovid.nl/</a></p><p>Info voor professionals met links naar YouTube <br><a href="https://batemanhornecenter.org/education/top-resources/" rel="nofollow" class="ellipsis" title="batemanhornecenter.org/education/top-resources/"><span class="invisible">https://</span><span class="ellipsis">batemanhornecenter.org/educati</span><span class="invisible">on/top-resources/</span></a></p><p>Overzichtsartikel<br><a href="https://health.mountsinai.org/blog/five-years-post-pandemic-heres-what-weve-learned-about-long-covid/" rel="nofollow" class="ellipsis" title="health.mountsinai.org/blog/five-years-post-pandemic-heres-what-weve-learned-about-long-covid/"><span class="invisible">https://</span><span class="ellipsis">health.mountsinai.org/blog/fiv</span><span class="invisible">e-years-post-pandemic-heres-what-weve-learned-about-long-covid/</span></a></p><p>Filmpjesreeks LongCovid Physio UK<br><a href="https://youtube.com/playlist?list=PLzyLGd4jQxQ-zNjmOUR43ha53AjXHU3HH" rel="nofollow" class="ellipsis" title="youtube.com/playlist?list=PLzyLGd4jQxQ-zNjmOUR43ha53AjXHU3HH"><span class="invisible">https://</span><span class="ellipsis">youtube.com/playlist?list=PLzy</span><span class="invisible">LGd4jQxQ-zNjmOUR43ha53AjXHU3HH</span></a></p><p><a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/postcovid/" rel="tag">#postcovid</a></p>

<p>From <a href="/tags/meaction/" rel="tag">#MEAction</a> -</p><p>&quot;ICE Makes Me Sick: Fund Healthcare, Not Violence&quot;</p><p><a href="https://www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence" rel="nofollow" class="ellipsis" title="www.meaction.net/post/ice-makes-me-sick-fund-healthcare-not-violence"><span class="invisible">https://</span><span class="ellipsis">www.meaction.net/post/ice-make</span><span class="invisible">s-me-sick-fund-healthcare-not-violence</span></a></p><p>&quot;No more money to ICE. Restore funding for healthcare and independent living support for disabled people.&quot;</p><p>You can help!</p><p>Email your Congress rep using this tool:</p><p><a href="https://actionnetwork.org/letters/ice-makes-me-sick/" rel="nofollow" class="ellipsis" title="actionnetwork.org/letters/ice-makes-me-sick/"><span class="invisible">https://</span><span class="ellipsis">actionnetwork.org/letters/ice-</span><span class="invisible">makes-me-sick/</span></a></p><p>Read the Take Action Guide for more actions:</p><p><a href="https://docs.google.com/document/d/1m2ildcczbynGRYAhNldmfuTLUdxnZB4z8oNhP8YPlg4/edit?tab=t.0#heading=h.cp029e1ob1r8" rel="nofollow" class="ellipsis" title="docs.google.com/document/d/1m2ildcczbynGRYAhNldmfuTLUdxnZB4z8oNhP8YPlg4/edit?tab=t.0#heading=h.cp029e1ob1r8"><span class="invisible">https://</span><span class="ellipsis">docs.google.com/document/d/1m2</span><span class="invisible">ildcczbynGRYAhNldmfuTLUdxnZB4z8oNhP8YPlg4/edit?tab=t.0#heading=h.cp029e1ob1r8</span></a></p><p>co-sponsored by Long Covid Justice</p><p><a href="/tags/uspol/" rel="tag">#USPol</a> <a href="/tags/iceout/" rel="tag">#ICEout</a> <a href="/tags/abolishice/" rel="tag">#AbolishICE</a> <a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/chronicillness/" rel="tag">#ChronicIllness</a> <a href="/tags/disability/" rel="tag">#Disability</a> <a href="/tags/resist/" rel="tag">#Resist</a></p>

<p>&quot;Why I Can’t Just Meet You for Dinner&quot;</p><p><a href="https://substack.com/home/post/p-178293036" rel="nofollow" class="ellipsis" title="substack.com/home/post/p-178293036"><span class="invisible">https://</span><span class="ellipsis">substack.com/home/post/p-17829</span><span class="invisible">3036</span></a></p><p>A description of PEM (post-exertional malaise) along with some tips for how to explain it to loved ones.</p><p>&quot;Post-exertional malaise (PEM for those of us who live with it intimately) is not tiredness. It’s not even exhaustion.</p><p>It’s a systemic crash that occurs after physical, cognitive, or emotional exertion that exceeds your body’s brutally reduced energy envelope.&quot;</p><p><span class="h-card"><a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card"><a href="https://fedigroups.social/@longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/pem/" rel="tag">#PEM</a> <a href="/tags/chronicillness/" rel="tag">#ChronicIllness</a></p>

<p>It&#x27;s my birthday today, and I wrote this thing on my blog about how I experienced the last year: <a href="https://www.johannesjaeger.eu/blog/living-with-fatigue-and-a-society-that-does-not-care" rel="nofollow" class="ellipsis" title="www.johannesjaeger.eu/blog/living-with-fatigue-and-a-society-that-does-not-care"><span class="invisible">https://</span><span class="ellipsis">www.johannesjaeger.eu/blog/liv</span><span class="invisible">ing-with-fatigue-and-a-society-that-does-not-care</span></a>.</p><p>I really needed to get this out of my system.<br>Millions are missing, and nobody seems to care.<br><a href="/tags/mecfs/" rel="tag">#MECFS</a> <a href="/tags/mcas/" rel="tag">#MCAS</a> <a href="/tags/longcovid/" rel="tag">#LongCOVID</a></p>

<p>collaborative and community blog to leave our mark around the love of care and the fight against eugenics</p><p><a href="https://masksarecommunity.substack.com/about" rel="nofollow" class="ellipsis" title="masksarecommunity.substack.com/about"><span class="invisible">https://</span><span class="ellipsis">masksarecommunity.substack.com</span><span class="invisible">/about</span></a></p><p>about this blog:<br>hello, my name is demian, i have been thinking for a few months about starting a collaborative blog, i have my own blogs where i upload my reflections, but i think it would be interesting to have a common space where i could publish and have the freedom to publish with or without a name and have it all in one blog, one of hope, love and radicalism.<br>the struggle against eugenics, like other radical struggles, feels very lonely. especially when the state and the system have put so much money in individualistic propaganda both before the pandemic and especially after the beginning of the pandemic.<br>having compassionate common spaces of love for the care of the masks and the fight against eugenics is key to be able to continue the fight. that is what this blog is for. if you would like to participate and/or help with the management of this blog, you can communicate through:<br>[email protected]<br><a href="https://t.me/demianmasks" rel="nofollow"><span class="invisible">https://</span>t.me/demianmasks</a><br>signal: demian.67</p><p><a href="/tags/covidpersistente/" rel="tag">#CovidPersistente</a> <a href="/tags/llevamascarilla/" rel="tag">#LlevaMascarilla</a> <a href="/tags/realistacovid/" rel="tag">#RealistaCovid</a> <a href="/tags/autodefensasanitaria/" rel="tag">#AutoDefensaSanitaria</a> </p><p><a href="/tags/maskup/" rel="tag">#MaskUp</a> <a href="/tags/wearamask/" rel="tag">#WearAMask</a> <a href="/tags/covidrealist/" rel="tag">#CovidRealist</a> <a href="/tags/covidisairbone/" rel="tag">#CovidIsAirbone</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a></p>

<p>News from <a href="/tags/meaction/" rel="tag">#MEAction</a> - planning for <a href="/tags/millionsmissing/" rel="tag">#MillionsMissing</a> 2025 (May 12)</p><p>&quot;If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10&quot;</p><p>Meeting 1: Thursday, 4/10, 12pm PT/3pm ET<br><a href="https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration" rel="nofollow" class="ellipsis" title="us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration"><span class="invisible">https://</span><span class="ellipsis">us06web.zoom.us/meeting/regist</span><span class="invisible">er/EHwZzzubSpqIi31vM1VRNQ#/registration</span></a></p><p>Meeting 2: Thursday, 4/10, 3pm PT/6pm ET<br><a href="https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration" rel="nofollow" class="ellipsis" title="us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration"><span class="invisible">https://</span><span class="ellipsis">us06web.zoom.us/meeting/regist</span><span class="invisible">er/2hriH4c1RU6VbSGbEBrjHA#/registration</span></a></p><p>Details:<br><a href="https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/" rel="nofollow" class="ellipsis" title="www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/"><span class="invisible">https://</span><span class="ellipsis">www.meaction.net/2025/04/02/mi</span><span class="invisible">llionsmissing-2025-sending-out-an-sos/</span></a></p><p>@mecfs </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/pwlc/" rel="tag">#PwLC</a> <a href="/tags/meawareness/" rel="tag">#MEAwareness</a> <a href="/tags/may12/" rel="tag">#May12</a> <a href="/tags/myalgicencephalomyelitis/" rel="tag">#MyalgicEncephalomyelitis</a></p>

<p>&quot;Power, Progress, and Patient-Led Change&quot;</p><p>An overiew of Advocacy Week 2025 from Solve ME:</p><p><a href="https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/" rel="nofollow" class="ellipsis" title="solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/advocacy-week-202</span><span class="invisible">5-power-progress-and-patient-led-change/</span></a></p><p>&quot;In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices.&quot;</p><p>@mecfs @longcovid </p><p>1/n</p><p><a href="/tags/uspol/" rel="tag">#USPol</a> <a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/pots/" rel="tag">#POTS</a> <a href="/tags/congress/" rel="tag">#Congress</a> <a href="/tags/senate/" rel="tag">#Senate</a> <a href="/tags/advocacy/" rel="tag">#Advocacy</a> <a href="/tags/solveme/" rel="tag">#SolveME</a></p>

<p>RE: <a href="https://disabled.social/@ahimsa_pdx/115992177959522535" rel="nofollow" class="ellipsis" title="disabled.social/@ahimsa_pdx/115992177959522535"><span class="invisible">https://</span><span class="ellipsis">disabled.social/@ahimsa_pdx/11</span><span class="invisible">5992177959522535</span></a></p><p>Update from <a href="/tags/meaction/" rel="tag">#MEAction</a> </p><p>&quot;Why We Launched an ICE campaign&quot;</p><p><a href="https://www.meaction.net/post/why-we-launched-an-ice-campaign" rel="nofollow" class="ellipsis" title="www.meaction.net/post/why-we-launched-an-ice-campaign"><span class="invisible">https://</span><span class="ellipsis">www.meaction.net/post/why-we-l</span><span class="invisible">aunched-an-ice-campaign</span></a></p><p>&quot;Congress cut $1 trillion dollars from Medicaid over 10 years, gutting healthcare access and home and community based services that tens of thousands of people in our community rely on to survive. Meanwhile, in the same bill that stripped money from Medicaid, Congress allocated $85 billion to ICE.&quot;</p><p><a href="/tags/uspol/" rel="tag">#USPol</a> <a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/chronicillness/" rel="tag">#ChronicIllness</a> <a href="/tags/disability/" rel="tag">#Disability</a> <a href="/tags/iceout/" rel="tag">#ICEout</a> <a href="/tags/abolishice/" rel="tag">#AbolishICE</a> <a href="/tags/resist/" rel="tag">#Resist</a></p>

<p>I think I&#x27;ve already posted this but it&#x27;s worth re-posting:</p><p>&quot;Trump admin&#x27;s attacks on chronic disease research abandons long COVID and ME/CFS patients... Again&quot;</p><p><a href="https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/" rel="nofollow" class="ellipsis" title="www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/"><span class="invisible">https://</span><span class="ellipsis">www.salon.com/2025/04/01/admin</span><span class="invisible">s-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/</span></a></p><p>&quot;Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS&quot;</p><p>@mecfs @longcovid </p><p>Edit: added hashtag</p><p><a href="/tags/uspol/" rel="tag">#USPol</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/research/" rel="tag">#Research</a></p>

<p>Estudios en 14 países muestran una tasa de COVID persistente del 25% al 30% </p><p><a href="https://www.cidrap.umn.edu/covid-19/studies-across-14-nations-show-25-30-rate-long-covid" rel="nofollow" class="ellipsis" title="www.cidrap.umn.edu/covid-19/studies-across-14-nations-show-25-30-rate-long-covid"><span class="invisible">https://</span><span class="ellipsis">www.cidrap.umn.edu/covid-19/st</span><span class="invisible">udies-across-14-nations-show-25-30-rate-long-covid</span></a></p><p><a href="https://autodefesasanitaria.substack.com/p/estudios-en-14-paises-muestran-una" rel="nofollow" class="ellipsis" title="autodefesasanitaria.substack.com/p/estudios-en-14-paises-muestran-una"><span class="invisible">https://</span><span class="ellipsis">autodefesasanitaria.substack.c</span><span class="invisible">om/p/estudios-en-14-paises-muestran-una</span></a></p><p><a href="/tags/maskup/" rel="tag">#MaskUp</a> <a href="/tags/wearamask/" rel="tag">#WearAMask</a> <a href="/tags/covidrealist/" rel="tag">#CovidRealist</a> <a href="/tags/covidisairbone/" rel="tag">#CovidIsAirbone</a> </p><p><a href="/tags/llevamascarilla/" rel="tag">#LlevaMascarilla</a> <a href="/tags/realistacovid/" rel="tag">#RealistaCovid</a> <a href="/tags/covidsonaerosoles/" rel="tag">#CovidSonAerosoles</a> <a href="/tags/birdflu/" rel="tag">#birdflu</a> <a href="/tags/gripeaviar/" rel="tag">#gripeaviar</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a></p>

<p>Peeps with long Covid who live in and around NYC </p><p>Mount Sinai is taking applications for a long covid clinical trial using low-dose rapamycin.</p><p><a href="/tags/longcovid/" rel="tag">#LongCovid</a> @longcovid <a href="/tags/rapamycin/" rel="tag">#rapamycin</a> <a href="/tags/sirolimus/" rel="tag">#Sirolimus</a> <a href="/tags/nyc/" rel="tag">#NYC</a> <a href="/tags/ny/" rel="tag">#NY</a> <a href="/tags/nj/" rel="tag">#NJ</a> <a href="/tags/ct/" rel="tag">#CT</a></p>

<p>¿Será esta la ola de COVID que me acabará matando?<br>Viendo los nuevos contagios, como a las nuevas variantes, pienso ¿es aquí donde me convierto en uno de los números que dicen daños colaterales? </p><p>¿Será aquí donde se diga que hay pocas personas que mueren por coronavirus y que sienten mi muerte pero que a veces pasa? ¿Es aquí donde desarrollo enfermedades y discapacidades más terribles como consecuencia de otra infección por COVID? ¿Es aquí donde mi COVID persistente empeorará?</p><p>¿Será aquí donde nuevas enfermedades serán utilizadas como una excusa para la violencia por parte de algunos médicos? ¿Es aquí donde un nuevo episodio de debilidad transformará mi vida y me hará ver de nuevo las personas que realmente están dispuestas a cuidarme y las que tienen demasiado ego para ello?</p><p>El COVID no es azaroso ni inevitable; es pura matemática, y cualquier forma de reducción de daños, cualquier manera de romper la cadena de transmisión, marca la diferencia. No dejes que el sistema te diga qué palabras usar ni qué significados darles. Las vidas de las personas con discapacidad o de las personas categorizadas como débiles no son desechables, y debemos luchar contra esa idea.</p><p>En 2020 estuve muy cerca de mi muerte y recuerdo que cuando sentía que iba a irme, me sobrecogió recuerdos reconfortantes, personas había amado o amaba, eventos que me hacían sentir fuerza. </p><p>Quiero que toda persona Consciente del COVID sepa que es gracias a vuestro cuidado comunitario que respiro ahora, y ni hasta mi último respiro olvidaré esto. </p><p><a href="/tags/covidpersistente/" rel="tag">#CovidPersistente</a> <a href="/tags/llevamascarilla/" rel="tag">#LlevaMascarilla</a> <a href="/tags/realistacovid/" rel="tag">#RealistaCovid</a> <a href="/tags/covidsonaerosoles/" rel="tag">#CovidSonAerosoles</a> <a href="/tags/birdflu/" rel="tag">#birdflu</a> <a href="/tags/gripeaviar/" rel="tag">#gripeaviar</a> </p><p><a href="/tags/maskup/" rel="tag">#MaskUp</a> <a href="/tags/wearamask/" rel="tag">#WearAMask</a> <a href="/tags/covidrealist/" rel="tag">#CovidRealist</a> <a href="/tags/covidisairbone/" rel="tag">#CovidIsAirbone</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a></p>

Not a single mask in sight. Very disappointing to see this, especially as we&#x27;re in a COVID uptick. The number of people in photo 1 who have their hands up is probably roughly equal to how many will leave this conference with COVID or some other respiratory illness.<br><br><a href="https://fosstodon.org/users/scala_lang/statuses/115056704676502452" rel="nofollow" class="ellipsis" title="fosstodon.org/users/scala_lang/statuses/115056704676502452"><span class="invisible">https://</span><span class="ellipsis">fosstodon.org/users/scala_lang</span><span class="invisible">/statuses/115056704676502452</span></a><br><br><a href="/tags/dev/" rel="tag">#dev</a> <a href="/tags/tech/" rel="tag">#tech</a> <a href="/tags/coding/" rel="tag">#coding</a> <a href="/tags/conference/" rel="tag">#conference</a> <a href="/tags/scala/" rel="tag">#scala</a> <a href="/tags/scaladays/" rel="tag">#ScalaDays</a> <a href="/tags/covidisnotover/" rel="tag">#CovidIsNotOver</a> <a href="/tags/covidisairborne/" rel="tag">#CovidIsAirborne</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/maskup/" rel="tag">#MaskUp</a> <a href="/tags/accessibility/" rel="tag">#accessibility</a><br>

<p>🚨 Call to action!</p><p>Help protect key ME/CFS language in the House Appropriations process.</p><p>The Senate included several major wins for the ME/CFS community in its FY26 funding bills. We need the House to ensure this language makes it all way through committee votes, full floor votes and the reconciliations process.</p><p>Please contact your house representative! You can use this automated toolkit to send email or call:</p><p><a href="https://solvecfs.quorum.us/campaign/136258/" rel="nofollow" class="ellipsis" title="solvecfs.quorum.us/campaign/136258/"><span class="invisible">https://</span><span class="ellipsis">solvecfs.quorum.us/campaign/13</span><span class="invisible">6258/</span></a></p><p>@mecfs @longcovid </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/uspol/" rel="tag">#USPol</a></p>

<p>Happy to see that Violet Affleck is still doing advocacy work for Long Covid! Many thanks to The Sick Times for this story ❤️</p><p>&quot;Violet Affleck advocates for children with Long COVID, masks, and clean indoor air at United Nations event&quot;</p><p><a href="https://thesicktimes.org/2025/09/23/violet-affleck-advocates-for-children-with-long-covid-masks-and-clean-indoor-air-at-united-nations-event/" rel="nofollow" class="ellipsis" title="thesicktimes.org/2025/09/23/violet-affleck-advocates-for-children-with-long-covid-masks-and-clean-indoor-air-at-united-nations-event/"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/09/23/vi</span><span class="invisible">olet-affleck-advocates-for-children-with-long-covid-masks-and-clean-indoor-air-at-united-nations-event/</span></a></p><p>“It is neglect of the highest order to look children in the eyes and say, ‘We knew how to protect you, and we didn’t do it&quot; 💯</p><p><span class="h-card"><a href="https://fedigroups.social/@longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <br><span class="h-card"><a href="https://fedigroups.social/@mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> </p><p><a href="/tags/covid/" rel="tag">#COVID</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/pasc/" rel="tag">#PASC</a> <a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/covidisnotover/" rel="tag">#CovidIsNotOver</a> <a href="/tags/airquality/" rel="tag">#AirQuality</a> <a href="/tags/maskup/" rel="tag">#MaskUp</a></p>

<p>my refresh (App for Covid Conscious Connections)</p><p>Hi! I&#x27;m Demian! Communist, non-binary, disabled, and COVID-realist from a compassionate and anti-capitalist perspective. I live with extreme chronic pain and fatigue that affects me every day.</p><p>For people interesed in connecting with me:<br>Signal: demian.86<br>Telegram: demianmasks<br>Discord: camaradademian</p><p><a href="https://www.refreshconnections.com/" rel="nofollow"><span class="invisible">https://</span>www.refreshconnections.com/</a></p><p><a href="/tags/maskup/" rel="tag">#MaskUp</a> <a href="/tags/wearamask/" rel="tag">#WearAMask</a> <a href="/tags/covidrealist/" rel="tag">#CovidRealist</a> <a href="/tags/covidisairbone/" rel="tag">#CovidIsAirbone</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/yallmasking/" rel="tag">#YallMasking</a> <a href="/tags/disabledliberation/" rel="tag">#DisabledLiberation</a> <a href="/tags/disabilityjustice/" rel="tag">#DisabilityJustice</a></p><p>.</p>

<p>Working on tomorrow&#x27;s Threat Model: Covid and I just noticed that last week&#x27;s was the 300th. Three hundred weekly <a href="/tags/covid/" rel="tag">#Covid</a> and <a href="/tags/longcovid/" rel="tag">#LongCovid</a> news updates. Every week, same time, same day, for 300 weeks. Wow.</p><p><a href="https://www.patreon.com/posts/covid-october-2-140250567" rel="nofollow" class="ellipsis" title="www.patreon.com/posts/covid-october-2-140250567"><span class="invisible">https://</span><span class="ellipsis">www.patreon.com/posts/covid-oc</span><span class="invisible">tober-2-140250567</span></a></p>