Tom Kindlon<p>The Netherlands:</p><p>The UWV benefits agency wrongly told several patients with ME that they could work a large part of the week or full-time. The Central Appeals Tribunal (CRvB) ruled this today in an interim ruling.</p><p>Google translation:<br><a href="https://nos-nl.translate.goog/artikel/2575416?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">nos-nl.translate.goog/artikel/</span><span class="invisible">2575416?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true</span></a></p><p>via <span class="h-card" translate="no"><a href="https://m.ai6yr.org/@me_valentijn" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>me_valentijn</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><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>
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#pwme
31 posts · 11 participants · 3 posts today
Tom Kindlon<p>3/<br>"Signs and symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a multiorgan, life-changing disease that manifests with a range of symptoms that vary between patients. Emerging research across a number of fields is beginning to resolve involved pathophysiologies"</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/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> <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> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/covid19" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>covid19</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/auscovid19" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>auscovid19</span></a></span> <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>"BIO-INSIGHT was applied to gene expression data from patients with fibromyalgia, myalgic encephalomyelitis, and co-diagnosis of both diseases."</p><p><a href="https://www.sciencedirect.com/science/article/pii/S0010482525009837" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">sciencedirect.com/science/arti</span><span class="invisible">cle/pii/S0010482525009837</span></a></p><p>Image is from the Science for ME weekly update</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><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> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/fibromyalgia" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>fibromyalgia</span></a></span><br><a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Fibromyalgia</span></a> <a href="https://disabled.social/tags/Fibro" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Fibro</span></a> <a href="https://disabled.social/tags/FMS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>FMS</span></a> <a href="https://disabled.social/tags/FM" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>FM</span></a></p>
Tom Kindlon<p>Coverage of the July 9 webinar which covered "new findings about the underlying biology of infection-associated chronic conditions (IACCs), as well as discussions about how patient engagement leads to better research"</p><p><a href="https://thesicktimes.org/2025/07/09/live-blog-following-the-patient-led-research-fund-summer-2025-webinar/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/07/09/li</span><span class="invisible">ve-blog-following-the-patient-led-research-fund-summer-2025-webinar/</span></a></p><p>Image is from the Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://mastodon.social/@thesicktimes" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>thesicktimes</span></a></span> <br><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><br><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/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NeuroPASC</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><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>
ahimsa<p>"Severe ME Artists Project 2025"</p><p><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><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. </p><p>Anyone who identifies as having severe ME can participate. </p><p>If you need help submitting your artwork send email to sMEartistsproject@meaction.net</p><p>Submissions are due by July 24.</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> </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/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SevereME</span></a> <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/Art" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Art</span></a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a></p>
ahimsa<p>The Summer 2025 edition of Solve ME's journal, The Chronicle, is now available.</p><p>Summary here:</p><p><a href="https://solvecfs.org/read-the-summer-2025-edition-of-the-chronicle/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/read-the-summer-2</span><span class="invisible">025-edition-of-the-chronicle/</span></a></p><p>Direct link to the summer 2025 issue (PDF) here:</p><p><a href="https://solvecfs.org/wp-content/uploads/2025/07/Summer2025ChronicleFinal.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/Summer2025ChronicleFinal.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><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/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</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/SolveME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>SolveME</span></a></p>
ahimsa<p>Another quote:</p><p>“Infection is one of the most well-known triggers of ME,” says study author Suzanne Vernon, Ph.D., the research director of the Bateman Horne Center in Murray, UT, and one of the nation's leading researchers in ME/CFS. </p><p>“It was pretty obvious that this was going to be an issue, and RECOVER provided the perfect opportunity to put numbers to it.” </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><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/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/COVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>COVID</span></a> <a href="https://disabled.social/tags/CovidIsNotOver" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CovidIsNotOver</span></a></p>
ahimsa<p>"With Long COVID, the Hidden Risks of ME/CFS Are Real"</p><p><a href="https://www.healthcentral.com/condition/coronavirus/long-covid-may-trigger-me-cfs" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">healthcentral.com/condition/co</span><span class="invisible">ronavirus/long-covid-may-trigger-me-cfs</span></a></p><p>"Researchers found that people who had COVID were nearly five times more likely to develop ME/CFS than those who never had the virus."</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><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/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/COVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>COVID</span></a> <a href="https://disabled.social/tags/CovidIsNotOver" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CovidIsNotOver</span></a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicIllness</span></a></p>
Tom Kindlon<p>In 1986, Dr Melvin Ramsay, a British physician renowned for his advocacy on ME, published a book documenting cases of ME following various confirmed or suspected infectious outbreaks, including the notable 1955 Royal Free Hospital outbreak.<br> <br>Read quotes: <a href="https://www.meresearch.org.uk/dr-melvin-ramsays-foresight-about-me-quotes-from-1986/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meresearch.org.uk/dr-melvin-ra</span><span class="invisible">msays-foresight-about-me-quotes-from-1986/</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></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/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>
Tom Kindlon<p>Germany<br>"The MIRACLE research project is now recruiting participants."<br><a href="https://www.ukgm.de/ugm_2/deu/umr_kar/65384.html" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">ukgm.de/ugm_2/deu/umr_kar/6538</span><span class="invisible">4.html</span></a></p><p>Image is from the latest Science for ME weekly update</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><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> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs_de" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs_de</span></a></span></p>
Tom Kindlon<p>"Experts call new Canadian Long COVID guidelines “contradictory” and “deeply concerning”: Guidelines recommend exercise and therapy as treatments, following attempted influence from Paul Garner"</p><p><a href="https://thesicktimes.org/2025/07/08/experts-call-new-canadian-long-covid-guidelines-contradictory-and-deeply-concerning/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/07/08/ex</span><span class="invisible">perts-call-new-canadian-long-covid-guidelines-contradictory-and-deeply-concerning/</span></a></p><p>Image is from the latest Science for ME weekly update</p><p><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><br><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/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>NeuroPASC</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><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>
Tom Kindlon<p>Authors of official Hungarian recommendations for the treatment of ME/CFS change their views after intervention from Prof Jonathan Edwards</p><p>Google translation:<br><a href="https://telex-hu.translate.goog/techtud/2025/07/10/kronikus-faradtsag-ajanlas-orvosi-hetilap-felrevezeto-allitasok?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">telex-hu.translate.goog/techtu</span><span class="invisible">d/2025/07/10/kronikus-faradtsag-ajanlas-orvosi-hetilap-felrevezeto-allitasok?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp</span></a></p><p>Image is from the latest Science for ME weekly update</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><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>
ahimsa<p>"The Tiger Who Came to Tea… and stayed" by <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><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>Many important issues in this article: the language gap, lack of research, and lack of clinical care for severe ME/CFS patients. </p><p>Bedbound patients have a harder time getting any type of medical treatment. They'll be excluded from most research studies. And on top of that, their symptoms and lived experience are often questioned.</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><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/ThereForME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ThereForME</span></a> <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/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwLC</span></a></p>
Irish ME/CFS Association<p>2/<br>Details for the next meeting of the Bray ME/CFS adult support group</p><p><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicE</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/Bray" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Bray</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></p>
Irish ME/CFS Association<p>The next meeting of the Bray ME/CFS adult support group is on Friday, July 25. See next post for more details</p><p><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/Bray" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Bray</span></a> <a href="https://mastodon.ie/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/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span> </p><p>1/</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 < 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>".. 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>
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