postcovid

<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>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>Long Covid Awareness Day post from Solve ME:</p><p><a href="https://solvecfs.org/recognizing-long-covid-awareness-day-resources-for-you/" rel="nofollow" class="ellipsis" title="solvecfs.org/recognizing-long-covid-awareness-day-resources-for-you/"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/recognizing-long-</span><span class="invisible">covid-awareness-day-resources-for-you/</span></a></p><p>&quot;Long Covid has affected people of all ages and backgrounds.</p><p>For many, it means navigating persistent symptoms that disrupt work, family life, and everyday routines.</p><p>For others, it has been the start of a much longer journey with infection-associated chronic conditions, including illnesses like ME/CFS and related disorders.&quot;</p><p>1/n</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> </p><p><a href="/tags/longcovidawarenessday/" rel="tag">#LongCovidAwarenessDay</a> <a href="/tags/longcovid/" rel="tag">#LongCovid</a> <a href="/tags/postcovid/" rel="tag">#PostCovid</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></p>

<p>Edit: Volunteers must register to get a link to Monday&#x27;s kickoff session!</p><p>Register here: <br><a href="https://docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform" rel="nofollow" class="ellipsis" title="docs.google.com/forms/d/e/1FAIpQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform"><span class="invisible">https://</span><span class="ellipsis">docs.google.com/forms/d/e/1FAI</span><span class="invisible">pQLSdR4eWbC6OWn1LAFAJhFg_CFz2xOaLYTPzj6kjSDELhAu0fdg/viewform</span></a></p><p>🗣️ ME/CFS Advocacy Week starts on Monday, March 23</p><p>First Zoom call starts at noon Pacific, 3 pm Eastern (will be recorded) </p><p>More details in the participant toolkit, see links below.</p><p>Canva version:</p><p><a href="https://www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view" rel="nofollow" class="ellipsis" title="www.canva.com/design/DAHDA3p0_NY/oTfLyW-lmGZIlbDdQfqmoA/view"><span class="invisible">https://</span><span class="ellipsis">www.canva.com/design/DAHDA3p0_</span><span class="invisible">NY/oTfLyW-lmGZIlbDdQfqmoA/view</span></a></p><p>PDF version:</p><p><a href="https://solvecfs.org/wp-content/uploads/2026/03/Printable-Version-Advocacy-Week-2026-Participant-Toolkit-2.pdf" rel="nofollow" class="ellipsis" title="solvecfs.org/wp-content/uploads/2026/03/Printable-Version-Advocacy-Week-2026-Participant-Toolkit-2.pdf"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/wp-content/upload</span><span class="invisible">s/2026/03/Printable-Version-Advocacy-Week-2026-Participant-Toolkit-2.pdf</span></a></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> <br><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/uspol/" rel="tag">#USPol</a> <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/postcovid/" rel="tag">#PostCovid</a> <a href="/tags/meded/" rel="tag">#MedEd</a> <a href="/tags/chronicillness/" rel="tag">#ChronicIllness</a></p>