pwme

<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>🧵 &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>&quot;Scale of how ME/CFS affects blood revealed&quot;</p><p><a href="https://www.ed.ac.uk/news/scale-of-how-mecfs-affects-blood-revealed" rel="nofollow" class="ellipsis" title="www.ed.ac.uk/news/scale-of-how-mecfs-affects-blood-revealed"><span class="invisible">https://</span><span class="ellipsis">www.ed.ac.uk/news/scale-of-how</span><span class="invisible">-mecfs-affects-blood-revealed</span></a></p><p>&quot;People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness.&quot;</p><p>This is early research, not a diagnostic test yet! The wording in some articles has been misleading.</p><p>@mecfs </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/diagnosis/" rel="tag">#Diagnosis</a> <a href="/tags/research/" rel="tag">#Research</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><a href="/tags/millionsmissing/" rel="tag">#MillionsMissing</a> 2025: Sending Out An SOS</p><p>Reminder: Two planning meetings for <a href="/tags/meaction/" rel="tag">#MEAction</a> Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow! </p><p><a href="https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/" rel="nofollow" class="ellipsis" title="www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/"><span class="invisible">https://</span><span class="ellipsis">www.meaction.net/2025/04/08/wh</span><span class="invisible">y-were-sending-out-an-sos-this-millionsmissing/</span></a></p><p>Here&#x27;s how to sign up</p><p>Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern</p><p><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, April 10, 3 pm Pacific / 6 pm Eastern</p><p><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>@mecfs </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/meawareness/" rel="tag">#MEAwareness</a> <a href="/tags/myalgicencephalomyelitis/" rel="tag">#MyalgicEncephalomyelitis</a> <a href="/tags/may12/" rel="tag">#May12</a></p>

<p>My updated <a href="/tags/introduction/" rel="tag">#introduction</a> on Mastodon.</p><p>I&#x27;m an author, mainly of science fiction and fantasy. Pagan. Dedicant of the Morrigan. Old salt. Cold War rebel -&gt; present day anarchist. We are the resistance. Friend of crows, rescuer of dogs, adopter of donkeys. Trans ally. The pronouns I prefer are he/him. I live with ME (<a href="/tags/pwme/" rel="tag">#pwME</a>) and arthritis.</p><p>If I get an unlikeable vibe off you, I&#x27;ll block you. No argument. No trading of insults. No warning.</p><p>My books are my activism: <a href="https://www.beatentrackpublishing.com/?ref=DavidBridger" rel="nofollow" class="ellipsis" title="www.beatentrackpublishing.com/?ref=DavidBridger"><span class="invisible">https://</span><span class="ellipsis">www.beatentrackpublishing.com/</span><span class="invisible">?ref=DavidBridger</span></a></p>

<p>Message from DecodeME:</p><p>&quot;Key genetic differences found in people with ME/CFS ...</p><p>These findings reflect the lived experience of thousands of <a href="/tags/pwme/" rel="tag">#pwME</a>. </p><p>Thanks to all our participants &amp; supporters who made this possible! </p><p>Read a summary of our results:<br><a href="https://www.decodeme.org.uk/initial-dna-results/" rel="nofollow" class="ellipsis" title="www.decodeme.org.uk/initial-dna-results/"><span class="invisible">https://</span><span class="ellipsis">www.decodeme.org.uk/initial-dn</span><span class="invisible">a-results/</span></a>&quot;</p><p>1/3</p><p>@mecfs </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/myalgicencephalomyelitis/" rel="tag">#MyalgicEncephalomyelitis</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/decodeme/" rel="tag">#DecodeME</a></p>

<p>🚨 DecodeME Genetic Results Webinar tomorrow, Thursday, Aug 14, 2:30 PM BST</p><p>Register here:<br><a href="https://us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration" rel="nofollow" class="ellipsis" title="us02web.zoom.us/webinar/register/WN_C82NbFK_TYGnJ_T6edmV-w#/registration"><span class="invisible">https://</span><span class="ellipsis">us02web.zoom.us/webinar/regist</span><span class="invisible">er/WN_C82NbFK_TYGnJ_T6edmV-w#/registration</span></a></p><p>(registration link will show time in your time zone)</p><p>Note from DecodeME:<br>&quot;There are limited spots to join on Zoom (registering does not guarantee a spot).</p><p>Don’t worry though, we will be recording it and we will also be sharing it live on Facebook at the time.&quot;</p><p>@mecfs </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/decodeme/" rel="tag">#DecodeME</a> <a href="/tags/gwas/" rel="tag">#GWAS</a></p>

<p>&quot;Multiple Abnormal Responses to Exertion Seen in ME/CFS&quot;</p><p><a href="https://www.medscape.com/viewarticle/multiple-abnormal-responses-exertion-seen-me-cfs-2026a10000q1" rel="nofollow" class="ellipsis" title="www.medscape.com/viewarticle/multiple-abnormal-responses-exertion-seen-me-cfs-2026a10000q1"><span class="invisible">https://</span><span class="ellipsis">www.medscape.com/viewarticle/m</span><span class="invisible">ultiple-abnormal-responses-exertion-seen-me-cfs-2026a10000q1</span></a></p><p>&quot;Fundamentally, the ME/CFS patient’s response to exercise is very different and very impaired…<br>These are objective changes in the bodies of these patients that correspond with what the patients are saying&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> </p><p><a href="/tags/mecfs/" rel="tag">#MEcfs</a> <a href="/tags/pwme/" rel="tag">#PwME</a> <a href="/tags/pem/" rel="tag">#PEM</a> <a href="/tags/research/" rel="tag">#Research</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&#x27;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>

<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>