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Tom Kindlon<p>2/<br>From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">pmc.ncbi.nlm.nih.gov/articles/</span><span class="invisible">PMC6468435/pdf/diagnostics-09-00026.pdf</span></a></p><p><a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a><br><a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> @longcovid<br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a></p>
Tom Kindlon<p>2/</p><p>From: "Assessment of Post-Exertional Malaise (PEM) in Patients with ME and CFS: A Patient-Driven Survey" (2019) by a Leonard A. Jason team <a href="https://pmc.ncbi.nlm.nih.gov/articles/PMC6468435/pdf/diagnostics-09-00026.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">pmc.ncbi.nlm.nih.gov/articles/</span><span class="invisible">PMC6468435/pdf/diagnostics-09-00026.pdf</span></a></p><p><a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a><br><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <br><a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" 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 noreferrer" target="_blank">@<span>longcovid</span></a></span></p>
Tom Kindlon<p>2/</p><p>Of note: “exertional dyspnea” with a prevalence of approx. 80% in ME/CFS: Shortness of breath during exercise (exertional dyspnea) produces a sensation of not being able to "get enough air" and a feeling of being "out of breath.</p><p><a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" 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 noreferrer" target="_blank">@<span>longcovid</span></a></span></p>
Irish ME/CFS Association<p>17/</p><p>May is <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> / <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> (<a href="https://mastodon.ie/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a>) Awareness Month.</p><p>Please help by sharing +/or liking this 6-minute Paper Stop-motion Animation About ME/CFS <a href="https://www.youtube.com/watch?v=dUrPFqGONM8" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=dUrPFqGONM</span><span class="invisible">8</span></a></p><p><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://mastodon.ie/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Irish ME/CFS Association<p>6/<br>May is Myalgic Encephalomyelitis (M.E.) Awareness Month.</p><p>You can help by reposting and/or liking</p><p>Day #6</p><p><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://mastodon.ie/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Irish ME/CFS Association<p>🧵</p><p>May is Myalgic Encephalomyelitis (M.E.) Awareness Month.</p><p>You can help by reposting and/or liking this image.</p><p>Day 1</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://mastodon.ie/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://mastodon.ie/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://mastodon.ie/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://mastodon.ie/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://mastodon.ie/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://mastodon.ie/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://mastodon.ie/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://mastodon.ie/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a></p>
Tom Kindlon<p>🧵<br>"ME/CFS Isn't Just Misunderstood, It's Actively Neglected"</p><p><a href="https://www.popsugar.com/fitness/mecfs-post-covid-49344168" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">popsugar.com/fitness/mecfs-pos</span><span class="invisible">t-covid-49344168</span></a></p><p>'Beth Pardo is among the people who developed ME/CFS after contracting COVID.' 'Pardo went from running ultramarathons to being unable to leave her bed'</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a></p>
Irish ME/CFS Association<p>Dr Speight's 5 free Irish ME/CFS talks in <a href="https://mastodon.ie/tags/Cork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Cork</span></a>/ <a href="https://mastodon.ie/tags/Dublin" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Dublin</span></a>/ <a href="https://mastodon.ie/tags/Galway" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Galway</span></a>/ <a href="https://mastodon.ie/tags/Limerick" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Limerick</span></a>/ <a href="https://mastodon.ie/tags/Sligo" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Sligo</span></a>, May 2024:<br><a href="https://irishmecfs.org/blog/dr-speights-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">irishmecfs.org/blog/dr-speight</span><span class="invisible">s-5-free-irish-mecfs-talks-in-corkdublingalwaylimericksligo-may-2024-plus-he-is-seeing-patients-aged-20-or-younger-for-free-while-he-is-in-ireland</span></a></p><p>Plus he is seeing patients aged 20 or younger for free while he is in Ireland.</p><p>Please share widely, tag others, etc.</p><p><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" 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 noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://mastodon.ie/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://mastodon.ie/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://mastodon.ie/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://mastodon.ie/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://mastodon.ie/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://mastodon.ie/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://mastodon.ie/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://mastodon.ie/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a> <a href="https://mastodon.ie/tags/EndMECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EndMECFS</span></a> <a href="https://mastodon.ie/tags/MECFSNews" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFSNews</span></a> <a href="https://mastodon.ie/tags/MEpvs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEpvs</span></a> <a href="https://mastodon.ie/tags/MEpostviralsyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEpostviralsyndrome</span></a></p>
Tom Kindlon<p>A big thank you to everyone who did anything, big or small, for the <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> / <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> cause in 2023 (including simply sharing messages on social media). </p><p>Together we can make a difference.</p><p> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/PostViralSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostViralSyndrome</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>2/<br>Identification of CD8 T-cell dysfunction associated with symptoms in <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> / <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> (<a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a>) &amp; <a href="https://disabled.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> and treatment with a nebulized antioxidant/anti-pathogen agent in a retrospective case series</p><p>Free<br><a href="https://www.sciencedirect.com/science/article/pii/S2666354623001345" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">sciencedirect.com/science/arti</span><span class="invisible">cle/pii/S2666354623001345</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 noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://disabled.social/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a></p>
Tom Kindlon<p>2/<br>For the past 2 years Jeremy, who has M.E. himself, has been travelling around the country photographing people in their homes, with the aim of showing the many ways in which the disease affects people.</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://disabled.social/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://disabled.social/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a></p>
Tom Kindlon<p>(UK)<br>Living with M.E. A Photographic Study by Jeremy Jeffs</p><p>Would you be willing to participate and share your ME journey?</p><p>Photographer Jeremy Jeffs is looking for more people to take part in a project that aims to give identity and visibility to people who are living with M.E.</p><p><a href="https://meassociation.org.uk/d7fb" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">meassociation.org.uk/d7fb</span><span class="invisible"></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 noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://disabled.social/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://disabled.social/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a> </p><p>1/</p>
Tom Kindlon<p>Sadly Michael VanElzakker posted this on Oct 22 after a similar Covid study came out:</p><p>"I've been recruiting for this same study in ME patients since before the pandemic, but people are not volunteering."</p><p>Please highlight widely 🙏 </p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://disabled.social/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://disabled.social/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a> <a href="https://disabled.social/tags/MAssachusetts" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MAssachusetts</span></a> <a href="https://disabled.social/tags/Boston" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Boston</span></a> <a href="https://disabled.social/tags/NewEngland" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NewEngland</span></a></p>
Tom Kindlon<p>"Treatment Harms to Patients with <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> / <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a>" by </p><p>David F Marks (an eminent academic psychologist)</p><p><a href="https://opastpublishers.com/open-access-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">opastpublishers.com/open-acces</span><span class="invisible">s-articles/treatment-harms-to-patients-with-myalgic-encephalomyelitischronic-fatigue-syndrome.pdf</span></a></p><p>Professionals have let down patients by not alerting everyone to this issue</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/Exercise" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Exercise</span></a> <a href="https://disabled.social/tags/CBT" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CBT</span></a> <span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> </p><p>1/</p>
Tom Kindlon<p>"Last Chance to Make History – the Huge <a href="https://disabled.social/tags/DecodeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DecodeME</span></a> Study is Closing Soon – and it Needs Your Help"</p><p><a href="https://www.healthrising.org/blog/2023/10/05/decode_me-study-closing-soon/" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">healthrising.org/blog/2023/10/</span><span class="invisible">05/decode_me-study-closing-soon/</span></a></p><p>Please help to get the word out either by liking and/or retooting this, or by highlighting the study in some other way</p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://disabled.social/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://disabled.social/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a> <span class="h-card"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a></p>
Tom Kindlon<p>Latest <br><a href="https://disabled.social/tags/DecodeMEstudy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DecodeMEstudy</span></a> e-newsletter is here:<br><a href="https://s4me.info/threads/uk-decodeme-recruitment-open-online-questionnaire-postal-spit-kit-12pm-12th-sept-2022.29463/page-30#post-494577" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">s4me.info/threads/uk-decodeme-</span><span class="invisible">recruitment-open-online-questionnaire-postal-spit-kit-12pm-12th-sept-2022.29463/page-30#post-494577</span></a></p><p>It shows they have less than 16,000 DNA samples (they have funding for 25,000). Hopefully the ME community will make a big effort to reach more people in next 8 weeks.</p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://disabled.social/tags/MyE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyE</span></a> <a href="https://disabled.social/tags/millionsmissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>millionsmissing</span></a> <a href="https://disabled.social/tags/DecodeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DecodeME</span></a></p>
Irish ME/CFS Association<p>Possible work accommodations for those still able to work:</p><p>Recommendations for ME/CFS from US Job Accommodations Network</p><p><a href="https://askjan.org/disabilities/Myalgic-Encephalomyelitis-Chronic-Fatigue-Syndrome.cfm" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">askjan.org/disabilities/Myalgi</span><span class="invisible">c-Encephalomyelitis-Chronic-Fatigue-Syndrome.cfm</span></a></p><p>Useful for people around the world</p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://mastodon.ie/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://mastodon.ie/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://mastodon.ie/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://mastodon.ie/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <span class="h-card"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://mastodon.ie/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.ie/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a></p>
Tom Kindlon<p>4/</p><p>"(Contd.)—or sensing bright lights and loud sounds, regulating body temperature on hot days, or coping with stress. And if in fatigue your batteries feel drained, in PEM they’re missing entirely. It’s the annihilation of possibility.”</p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <span class="h-card"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a></p>
Tom Kindlon<p>Just changed profile: now 29 years housebound with <a href="https://disabled.social/tags/severeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>severeME</span></a> (more than half my life) (ill 34.5 years)☹️</p><p>We need more public &amp; private money to make research progress soon, the quicker the better: my life &amp; the lives of millions of others are passing by.</p><p>Here's a list of ME/CFS research funds:</p><p><a href="http://phoenixrising.me/resources-2/research-charities" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">http://</span><span class="ellipsis">phoenixrising.me/resources-2/r</span><span class="invisible">esearch-charities</span></a></p><p>Here's my story as told in the Irish Independent in 2015:</p><p><a href="https://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">independent.ie/life/health-wel</span><span class="invisible">lbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html</span></a></p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a></p>
Tom Kindlon<p>Austria:<br>"Artists severely affected by <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> have created an exhibition about their disease which is currently on display at Künstlerhaus in Vienna</p><p>Link that should translate webpage into whatever language you want:<br><a href="https://www-kuenstlerhaus-at.translate.goog/besuch/kalender/ausstellung/445/crash.html?_x_tr_sl=de&amp;_x_tr_tl=en&amp;_x_tr_hl=en-US&amp;_x_tr_pto=wapp" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://</span><span class="ellipsis">www-kuenstlerhaus-at.translate</span><span class="invisible">.goog/besuch/kalender/ausstellung/445/crash.html?_x_tr_sl=de&amp;_x_tr_tl=en&amp;_x_tr_hl=en-US&amp;_x_tr_pto=wapp</span></a></p><p><span class="h-card"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p><p><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <a href="https://disabled.social/tags/CFSME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFSME</span></a> <a href="https://disabled.social/tags/MEeps" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEeps</span></a> <a href="https://disabled.social/tags/CFIDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFIDS</span></a> <a href="https://disabled.social/tags/SEID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SEID</span></a> <a href="https://disabled.social/tags/NeuroME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroME</span></a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/SevereMECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereMECFS</span></a><br><a href="https://disabled.social/tags/SevereCFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereCFS</span></a> <a href="https://disabled.social/tags/VerySevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>VerySevereME</span></a><br><span class="h-card"><a href="https://a.gup.pe/u/severeme" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>severeme</span></a></span></p>