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#CFS

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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>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>
Chronic Illness Humor Funny<p><a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/autoimmune" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>autoimmune</span></a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicallyill</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/chronicillnessmemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnessmemes</span></a> <a href="https://mastodon.social/tags/autoimmunememes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>autoimmunememes</span></a> <a href="https://mastodon.social/tags/fibromemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fibromemes</span></a> <a href="https://mastodon.social/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fibromyalgia</span></a> <a href="https://mastodon.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>spoonie</span></a> <a href="https://mastodon.social/tags/chronicillnesslife" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnesslife</span></a><br><a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/cfsmemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfsmemes</span></a> <a href="https://mastodon.social/tags/mecfsmemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfsmemes</span></a> <a href="https://mastodon.social/tags/chronicfatiguememes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicfatiguememes</span></a> <a href="https://mastodon.social/tags/fatiguememes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatiguememes</span></a></p>
Tom Kindlon<p>2/<br>Graphical abstract for:<br>The impact of leading questions on ME/CFS research: bias &amp; stigma in study design</p><p><a href="https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2530338" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">tandfonline.com/doi/full/10.10</span><span class="invisible">80/21641846.2025.2530338</span></a></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><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> <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>The impact of leading questions on ME/CFS research: bias &amp; stigma in study design</p><p><a href="https://www.tandfonline.com/doi/full/10.1080/21641846.2025.2530338" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">tandfonline.com/doi/full/10.10</span><span class="invisible">80/21641846.2025.2530338</span></a></p><p>"Leading or biased question phrasing may distort participant responses in <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> research, potentially inflating psychosomatic interpretations of the illness"</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><p>1/</p>
Tom Kindlon<p>From Sweden:<br>Beneficial effects of intermittent intravenous saline infusion in dysautonomic patients with <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 caseseries</p><p><a href="https://www.frontiersin.org/journals/neurology/articles/10.3389/fneur.2025.1601599/abstract" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">frontiersin.org/journals/neuro</span><span class="invisible">logy/articles/10.3389/fneur.2025.1601599/abstract</span></a></p><p>Great to see. Hopefully somebody will do a double-blind, placebo-control study. 🙏</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>
Chronic Illness Humor Funny<p>Art by Kelsie Brumet, I changed the words for chronic illness.</p><p><a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/autoimmune" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>autoimmune</span></a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicallyill</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/chronicillnessmemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnessmemes</span></a> <a href="https://mastodon.social/tags/autoimmunememes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>autoimmunememes</span></a> <a href="https://mastodon.social/tags/fibromemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fibromemes</span></a> <a href="https://mastodon.social/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fibromyalgia</span></a> <a href="https://mastodon.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>spoonie</span></a> <a href="https://mastodon.social/tags/chronicillnesslife" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnesslife</span></a> <a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/fatiguememes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatiguememes</span></a> <a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a></p>
Tom Kindlon<p>A knowledgeable and intelligent patient <span class="h-card" translate="no"><a href="https://mastodon.online/@mecfsskeptic" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfsskeptic</span></a></span><br>has written the following thread that starts:<br>1) The pilot results (n = 10) for the Daratumumab trial on ME/CFS have been published and they look quite encouraging. </p><p>Tolerability and feasibility were good and some patients had substantial improvements. </p><p><a href="https://skywriter.blue/pages/did:plc:ith7dzcppw7ru2enoauywkld/post/3ltokzxtirp2g" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">skywriter.blue/pages/did:plc:i</span><span class="invisible">th7dzcppw7ru2enoauywkld/post/3ltokzxtirp2g</span></a></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/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>"Decreased risk of chronic fatigue syndrome following influenza vaccine: a 20-year population-based retrospective study"</p><p><a href="https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06600-5" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">translational-medicine.biomedc</span><span class="invisible">entral.com/articles/10.1186/s12967-025-06600-5</span></a></p><p>"Influenza infection is associated with an increased risk of developing CFS"</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>
Chronic Illness Humor Funny<p>The energy Taylor Swift fans have for her music, I have for getting back to my bed.</p><p><a href="https://mastodon.social/tags/funny" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>funny</span></a> <a href="https://mastodon.social/tags/Humor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>Humor</span></a> <a href="https://mastodon.social/tags/humorous" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>humorous</span></a> <a href="https://mastodon.social/tags/haha" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>haha</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/chronicillnessfunny" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnessfunny</span></a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicallyill</span></a> <a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/sleepy" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>sleepy</span></a> <a href="https://mastodon.social/tags/alwaystired" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>alwaystired</span></a> <a href="https://mastodon.social/tags/sotired" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>sotired</span></a></p>
Tom Kindlon<p>🧵 <br>New US research:</p><p>Oxidative stress is a shared characteristic of ME/CFS &amp; <a href="https://disabled.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>LongCOVID</span></a></p><p><a href="https://www.pnas.org/doi/abs/10.1073/pnas.2426564122" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">pnas.org/doi/abs/10.1073/pnas.</span><span class="invisible">2426564122</span></a></p><p>"Due to excess oxidative stress &amp; consequent mitochondrial damage, ME/CFS &amp; LC donor lymphocytes consume excess host energy, contributing to debilitating fatigue &amp; other sequelae"</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><p>1/</p>
Tom Kindlon<p>2/<br>Abstract for:<br>"Patient-reported treatment outcomes in ME/CFS and long COVID"</p><p>Free fulltext:<br><a href="https://www.pnas.org/doi/epub/10.1073/pnas.2426874122" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">pnas.org/doi/epub/10.1073/pnas</span><span class="invisible">.2426874122</span></a></p><p>Authors include Ron Davis</p><p><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> <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/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MEcfs</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> <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>🧵<br>Patient-reported treatment outcomes in ME/CFS &amp; long COVID</p><p><a href="https://www.pnas.org/doi/abs/10.1073/pnas.2426874122" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">pnas.org/doi/abs/10.1073/pnas.</span><span class="invisible">2426874122</span></a></p><p>"results of an ME/CFS and long COVID treatment survey with responses from 3,925 patients"</p><p>"This study underscores the symptomatic and therapeutic similarities between <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>MECFS</span></a> &amp; <a href="https://disabled.social/tags/longCOVID" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>longCOVID</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><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/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><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></p><p>1/</p>
Tom Kindlon<p>New from Canada &amp; Norway:</p><p>SMPDL3B a novel biomarker and therapeutic target in myalgic encephalomyelitis</p><p><a href="https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-025-06829-0" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">translational-medicine.biomedc</span><span class="invisible">entral.com/articles/10.1186/s12967-025-06829-0</span></a></p><p>Funded by the Open Medicine Foundation Canada</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>
Chronic Illness Humor Funny<p>knees weak, arms are heavy<br>just woke up, lying down already.<br>or whatever Eminem said</p><p><a href="https://mastodon.social/tags/eminem" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>eminem</span></a> <a href="https://mastodon.social/tags/loseyourself" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>loseyourself</span></a> <a href="https://mastodon.social/tags/healthhumor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>healthhumor</span></a> <a href="https://mastodon.social/tags/helath" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>helath</span></a> <a href="https://mastodon.social/tags/healthmemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>healthmemes</span></a> <a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/fatiguehumor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatiguehumor</span></a> <a href="https://mastodon.social/tags/fatiguememes" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>fatiguememes</span></a> <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicallyill</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/chronicfatigue" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicfatigue</span></a></p>
Tom Kindlon<p>"UK NHS apps for Long Covid and ME/CFS"</p><p>Image is from the Science for ME weekly update</p><p>"Forum members have found serious issues with the contents of the app."</p><p><a href="https://www.s4me.info/threads/the-elaros-nhs-digital-system-for-patient-clinician-digital-sharing-questionnaire-data-includes-yorkshire-rehab-scale-and-open-oh-app.39324/" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/the-elaros-n</span><span class="invisible">hs-digital-system-for-patient-clinician-digital-sharing-questionnaire-data-includes-yorkshire-rehab-scale-and-open-oh-app.39324/</span></a></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>
Chronic Illness Humor Funny<p>You don't know what fatigue is until you've had to rest after eating a carrot.</p><p><a href="https://mastodon.social/tags/cfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>cfs</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#<span>chronicillness</span></a></p>
Tom Kindlon<p>From Germany:</p><p>Reaction time deficits in a 3D virtual reality test in patients with ME/CFS</p><p><a href="https://iovs.arvojournals.org/article.aspx?articleid=2805866" rel="nofollow noopener" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">iovs.arvojournals.org/article.</span><span class="invisible">aspx?articleid=2805866</span></a></p><p>"ME/CFS patients exhibit prolonged RTs in a virtual 3D environment compared to controls, with their performance deteriorating further over time"</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>"fibromyalgia &amp; chronic fatigue [syndrome] emerged as the most significant predictors, suggesting that photoallodynia presence may be more pronounced in individuals with broader nociplastic phenotypes"</p><p><a href="https://www.sciencedirect.com/science/article/abs/pii/S1542012425000850" 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/abs/pii/S1542012425000850</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>CDC-funded research in the US:</p><p>Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study</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/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>
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