<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>
pwlc
<p>🧵 "Two Households, Both Alike in Indignity: An Interview with Anne Ursu"</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 "an eleven-year-old, Violet, who comes down with a post-viral illness"</p><p>I'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>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>"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"</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>Hello to all the ME/CFS and Long Covid activists out there 👋</p><p>Solve ME and <a href="/tags/meaction/" rel="tag">#MEAction</a> are joining forces to work on a medical education initiative for this year's Advocacy Week, March 23-27.</p><p>More details:</p><p><a href="https://solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/" rel="nofollow" class="ellipsis" title="solvecfs.org/registration-open-for-me-cfs-advocacy-week-2026/"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/registration-open</span><span class="invisible">-for-me-cfs-advocacy-week-2026/</span></a></p><p>Registration link (Google docs form):</p><p><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><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/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/solveme/" rel="tag">#SolveME</a> <a href="/tags/meded/" rel="tag">#MedEd</a></p>
![How can we close the knowledge gap in ME/CFS and Long COVID care?
The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.
The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s [Infection Associated Chronic Conditions] such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.
Target: State healthcare leadership and patient safety agencies.](/proxy/post_attachment/234736/43e537ca10.png "How can we close the knowledge gap in ME/CFS and Long COVID care?
The Ask: We will meet with state and local healthcare leaders and ask for their support for introducing questions on ME/CFS and Long COVID medical exams at the national level.
The Theory of Change: By reaching out to patient safety/regulatory agencies, State Medical Boards, and State Health Leadership/Chief Medical Officers by state, framing ME/CFS education gaps as a patient safety and standard-of-care issue, we will move IACC’s [Infection Associated Chronic Conditions] such as ME/CFS and Long COVID from “optional knowledge” to “standardized knowledge” in clinical care.
Target: State healthcare leadership and patient safety agencies.")
<p>Edit: Volunteers must register to get a link to Monday'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>
Edited 15d ago