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Dr Ro Smith<p>This is a weird question, but:</p><p>For 2 years I have been using meditation (yoga nidra and shavayatra) to help me go to sleep. As a lifelong insomniac, I struggle to believe how well it's worked, BUT I am also a writer, and before that, I went to sleep by thinking about my stories. And for the last 2 years I have not written anything new. I almost feel like I have forgotten how to imagine.</p><p>Has anyone else experienced something like this? <a href="https://wandering.shop/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a> <a href="https://wandering.shop/tags/Meditation" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Meditation</span></a> <a href="https://wandering.shop/tags/sleep" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>sleep</span></a> <a href="https://wandering.shop/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://wandering.shop/tags/writing" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>writing</span></a> 1/2</p>
Tom Kindlon<p>8-minute interview on Irish national radio</p><p><a href="https://www.rte.ie/radio/radio1/clips/22527468/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">rte.ie/radio/radio1/clips/2252</span><span class="invisible">7468/</span></a></p><p>While ME is discussed a bit, the focus is more on the issue of living in a care/nursing home</p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillness</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SevereME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>chronicillness</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>spoonies</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>disability</span></a></span> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a></p>
Tom Kindlon<p>2/‬<br>‪Study used a broad definition of <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a>. "each cohort comprised 309,692 patients.Over an average follow-up period of approximately 12 years,influenza patients exhibited a significantly increased risk of developing CFS vs matched controls (aHR = 1.51; 95% CI: 1.48–1.55;p &lt; 0.001)”‬<br><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>2/</p><p>"findings suggest that immune dysregulation in ME may be linked to enhanced cleavage of membrane-bound SMPDL3B by PI-PLC."</p><p>However Science for ME forum commentary identified that the study may suffer from inadquate matching between patients and controls.</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>2/</p><p>"We performed a prospective, open-label pilot trial"</p><p>"Six out of 10 patients experienced clinical improvement during follow-up." </p><p>"there was a significant correlation between baseline number of NK cells in peripheral blood and clinical improvement"</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>Solve ME has an overview of this year's Advocacy Week 2025 on their website. There were a total of 187 meetings with congressional offices, with 226 attendees from across 36 states and Washington, D.C.</p><p><a href="https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/" rel="nofollow noopener" translate="no" target="_blank"><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><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://disabled.social/tags/cfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfs</span></a> <a href="https://disabled.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>longcovid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" 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" target="_blank">@<span>longcovid</span></a></span></p>
Tom Kindlon<p><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEAction</span></a> has announced their Severe ME Artists Project for 2025 in recognition of Severe ME Day on August 8th. Anyone who identifies as having severe ME can participate. Submissions are due by July 24.<br><a href="https://www.meaction.net/2025/07/10/severe-me-artists-project-2025/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meaction.net/2025/07/10/severe</span><span class="invisible">-me-artists-project-2025/</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" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SevereME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/severeme" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>severeme</span></a></span></p>
Tom Kindlon<p>Sweden:<br>mitteremitage writes about worrying aspects of a lecture series in primary care on post-infectious conditions which is based on controversial guidelines from National Board of Health &amp; welfare.</p><p>Google translation:<br><a href="https://mitteremitage-wordpress-com.translate.goog/2025/07/07/region-stockholms-utbildningspaket-ett-stort-svek-mot-patienterna/?_x_tr_sl=sv&amp;_x_tr_tl=en&amp;_x_tr_hl=sv&amp;_x_tr_pto=wapp" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">mitteremitage-wordpress-com.tr</span><span class="invisible">anslate.goog/2025/07/07/region-stockholms-utbildningspaket-ett-stort-svek-mot-patienterna/?_x_tr_sl=sv&amp;_x_tr_tl=en&amp;_x_tr_hl=sv&amp;_x_tr_pto=wapp</span></a></p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" 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" target="_blank">@<span>longcovid</span></a></span></p>
Dr Ro Smith<p>I'm really missing being able to go out and enjoy summer, today. <a href="https://wandering.shop/tags/NEISvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NEISvoid</span></a> <a href="https://wandering.shop/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a></p>
Tom Kindlon<p>".. an inverse relationship occurs in ME. The greater the need, the fewer interventions one receives. The more the illness restricts your daily life, the less one is believed. We see a severity paradox, where injustice escalates fast." -<br><span class="h-card" translate="no"><a href="https://mastodonapp.uk/@LongCovidAdvoc" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>LongCovidAdvoc</span></a></span> </p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" 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" target="_blank">@<span>severeme</span></a></span></p>
Tom Kindlon<p><a href="https://disabled.social/tags/ThereForME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ThereForME</span></a> guest blog is from <span class="h-card" translate="no"><a href="https://mastodonapp.uk/@LongCovidAdvoc" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>LongCovidAdvoc</span></a></span></p><p>They write about the experience of severe ME, exclusion from research and healthcare, and how the sickest patients are putting their health at risk to help others.</p><p><a href="https://www.thereforme.uk/p/the-tiger-who-came-to-tea-and-stayed/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thereforme.uk/p/the-tiger-who-</span><span class="invisible">came-to-tea-and-stayed/</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" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SevereME</span></a><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a></p>
Lars Marowsky-Brée 😷<p>Harsh but true: not striving to protect against viral infections is probabilistic murder.</p><p><a href="https://taz.de/!6100636/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="">taz.de/!6100636/</span><span class="invisible"></span></a></p><p><a href="https://mastodon.online/tags/SARSCoV2" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SARSCoV2</span></a> <a href="https://mastodon.online/tags/Influenza" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Influenza</span></a> <a href="https://mastodon.online/tags/EpsteinBarr" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>EpsteinBarr</span></a> <a href="https://mastodon.online/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> <a href="https://mastodon.online/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.online/tags/Covid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Covid19</span></a></p>
Science4ME News Bot<p>Science for ME: News in Brief<br>7 - 13 Jul 2025</p><p>This week's research articles, media items, advocacy and other news relating to <a href="https://mas.to/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> and <a href="https://mas.to/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://www.s4me.info/threads/news-in-brief-july-2025.44966/post-623749" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/news-in-brie</span><span class="invisible">f-july-2025.44966/post-623749</span></a></p>
Ortwin Pinke<p><a href="https://mastodon.online/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> </p><p>---<br>Zur Krankheit ME/CFS: Versorgung statt Hoffnung | taz.de<br><a href="https://taz.de/Zur-Krankheit-ME/CFS/!6100636/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">taz.de/Zur-Krankheit-ME/CFS/!6</span><span class="invisible">100636/</span></a></p>
GroßStadtPflanze :verified:<p>Meine Freundin, die wegen <a href="https://norden.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> bettlägrig ist, hat mir zwei Hinweise geschickt.<br>Für Medizinmenschen ein Fachbuch: <a href="https://www.hogrefe.com/de/shop/das-handbuch-me-cfs-99570.html" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">hogrefe.com/de/shop/das-handbu</span><span class="invisible">ch-me-cfs-99570.html</span></a><br>Auch für Betroffene eine Studie (es wurden über 3000 Patient*innen, hauptsächlich Frauen, logischerweise, befragt darüber, welche Symptome sie haben und was ihnen insgesamt und für welche Symptome wie gut geholfen bzw. geschadet hat. Die Ergebnisse sind in Grafiken recht Übersichtlich dargestellt): <a href="https://www.pnas.org/doi/10.1073/pnas.2426874122" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">pnas.org/doi/10.1073/pnas.2426</span><span class="invisible">874122</span></a><br><a href="https://norden.social/tags/PlsRT" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PlsRT</span></a> 🔄</p>
ahimsa<p>I'll end by saying I did advocacy week for the first time this year. I learned so much &amp; enjoyed meeting (via Zoom) other volunteers who attended Senate &amp; House staff meetings. </p><p>The training sessions were helpful and were recorded in case you could not watch in real time.</p><p>My team leader was so well informed. It helps to have healthy volunteers (no brain fog) in addition to patient volunteers!</p><p>Kudos to Solve ME!</p><p><a href="https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/" rel="nofollow noopener" translate="no" target="_blank"><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><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" 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" target="_blank">@<span>longcovid</span></a></span> </p><p>5/5</p><p><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>USPol</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a></p>
ahimsa<p>More quotes:</p><p>"We also hosted our annual EmPOWER M.E. virtual forum, designed to give patients practical tools and legal knowledge to navigate life with complex chronic illness.</p><p>This year’s main session focused on the life-saving practice of pacing — including physical, emotional, cognitive, practical, and sensory strategies …"</p><p>Recording of the June 27 EmPOWER M.E. forum:</p><p><a href="https://www.youtube.com/watch?v=to9xPPuRM1o" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=to9xPPuRM1</span><span class="invisible">o</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" 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" target="_blank">@<span>longcovid</span></a></span> </p><p>4/n</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a> <a href="https://disabled.social/tags/PEM" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PEM</span></a> <a href="https://disabled.social/tags/StopRestPace" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>StopRestPace</span></a></p>
ahimsa<p>Policy asks:</p><p>- Restore funding for Congressionally Directed Medical Research Program (CDMRP) &amp; protect ME/CFS as a topic area</p><p>- Protect &amp; restore the CDC’s Chronic Fatigue Syndrome Program</p><p>- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEAction</span></a> and <a href="https://disabled.social/tags/NotJustFatigue" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NotJustFatigue</span></a>)</p><p>- Support 10-year follow-up to the 2015 IOM/NASEM report</p><p>- Ensure ME/CFS is included in NIH restructuring discussions</p><p>Details:</p><p><a href="https://solvecfs.org/wp-content/uploads/2025/07/Congressional_Briefing_061625Final.pdf" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/wp-content/upload</span><span class="invisible">s/2025/07/Congressional_Briefing_061625Final.pdf</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" 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" target="_blank">@<span>longcovid</span></a></span> </p><p>3/n</p><p><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>USPol</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a></p>
ahimsa<p>Another quote:</p><p>"This year’s Advocacy Week was intentionally focused. We prioritized key bipartisan members of Congress involved in the federal budget process—at a time when essential ME/CFS and Long COVID programs and funding are on the chopping block. We trained new advocates, empowered seasoned leaders, and adjusted in real-time to fast-moving developments in D.C."</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" 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" target="_blank">@<span>longcovid</span></a></span></p><p>2/n </p><p><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>USPol</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://disabled.social/tags/Congress" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Congress</span></a> <a href="https://disabled.social/tags/Senate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Senate</span></a> <a href="https://disabled.social/tags/Advocacy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Advocacy</span></a></p>
ahimsa<p>"Power, Progress, and Patient-Led Change"</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 noopener" translate="no" target="_blank"><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>"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."</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" 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" target="_blank">@<span>longcovid</span></a></span> </p><p>1/n</p><p><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>USPol</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>POTS</span></a> <a href="https://disabled.social/tags/Congress" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Congress</span></a> <a href="https://disabled.social/tags/Senate" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Senate</span></a> <a href="https://disabled.social/tags/Advocacy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Advocacy</span></a> <a href="https://disabled.social/tags/SolveME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SolveME</span></a></p>