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#chronicfatiguesyndrome

17 posts9 participants4 posts today
Irish ME/CFS Association<p>(Ireland)<br>An enquiry somebody has sent us which they said we could share.</p><p>If you prefer, you can reply to us directly and we can pass on replies without naming you if you want. </p><p><a href="https://mastodon.ie/tags/Disabled" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Disabled</span></a> <a href="https://mastodon.ie/tags/Disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Disability</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>chronicillness</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>spoonies</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>disability</span></a></span><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disabilityjustice" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>disabilityjustice</span></a></span><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><br><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></p>
Tom Kindlon<p>Abstract for US PhD Thesis<br>Molecular Epidemiologic Studies of Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)</p><p><a href="https://scholarsarchive.library.albany.edu/etd/173" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">scholarsarchive.library.albany</span><span class="invisible">.edu/etd/173</span></a></p><p>Screenshot is from the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener 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></p>
Tom Kindlon<p>Friday 6th June, 2-3pm:<br>AfME is hosting a webinar to share the latest updates from research linked to the Genetics Centre of Excellence.</p><p><a href="https://www.actionforme.org.uk/gcoe-2025-webinar/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">actionforme.org.uk/gcoe-2025-w</span><span class="invisible">ebinar/</span></a></p><p>Screenshot is from the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener 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></p>
Tom Kindlon<p>About a problematic response from The Royal Australian College of General Practitioners to the scoping survey issued by Australia's National Health &amp; Medical Research Council regarding new ME/CFS clinical practice guidelines.</p><p><a href="https://virology.ws/2025/05/09/trial-by-error-australian-gps-keep-promoting-exercise-treatments-for-me-cfs/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">virology.ws/2025/05/09/trial-b</span><span class="invisible">y-error-australian-gps-keep-promoting-exercise-treatments-for-me-cfs/</span></a></p><p>Screenshot is from the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener 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></p>
Tom Kindlon<p>Sunday Conversations: Community Conversations<br>"Shared Paths: Connecting Through Similar Stages of Your Chronic Condition"</p><p>Register here:<br><a href="https://form.jotform.com/243518011897157" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">form.jotform.com/2435180118971</span><span class="invisible">57</span></a></p><p>9 PM in Great Britain &amp; Ireland</p><p>Find the time in your time zone here:<br><a href="https://www.timeanddate.com/worldclock/fixedtime.html?msg=%22Shared+Paths%3A+Connecting+Through+Similar+Stages+of+Your+Chronic+Condition%22&amp;iso=20250518T16&amp;p1=43&amp;ah=1" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">timeanddate.com/worldclock/fix</span><span class="invisible">edtime.html?msg=%22Shared+Paths%3A+Connecting+Through+Similar+Stages+of+Your+Chronic+Condition%22&amp;iso=20250518T16&amp;p1=43&amp;ah=1</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><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></p>
Tom Kindlon<p>"May 12 is International ME/CFS Awareness Day" (3 minutes) by Suzan Jackson</p><p><a href="https://youtube.com/shorts/89tFeYH-3RE" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">youtube.com/shorts/89tFeYH-3RE</span><span class="invisible"></span></a></p><p>I'm not convinced by the latest prevalence figures she quotes for the US but who knows what the real figure is.</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><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></p>
Tom Kindlon<p>"<a href="https://disabled.social/tags/SaveOurScience" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SaveOurScience</span></a>: Science is under threat. There is no kinder, gentler way to say it" by Jennie Spotila</p><p><a href="https://occupyme.net/2025/05/12/saveourscience/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">occupyme.net/2025/05/12/saveou</span><span class="invisible">rscience/</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><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></p>
Tom Kindlon<p>I’m one of many in this awareness video.</p><p>From @ <a href="http://this.is" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">http://</span><span class="">this.is</span><span class="invisible"></span></a>.the.illness.m.e on Instagram 👍:</p><p>"This video might take a few minutes to watch, but M.E takes years. Decades. Whole lives.</p><p>"Today is May 12th, the International ME Day. Living with ME (Myalgic Encephalomyelitis) means missing out on life while the world moves on without you.</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><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> </p><p>1/</p>
Chronic Illness Humor Funny<p>Artist: sayheysimon on Insta</p><p><a href="https://mastodon.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://mastodon.social/tags/autoimmune" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmune</span></a> <a href="https://mastodon.social/tags/chronicallyill" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicallyill</span></a> <a href="https://mastodon.social/tags/chronicillnesshumor" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnesshumor</span></a> <a href="https://mastodon.social/tags/chronicillnessmemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillnessmemes</span></a> <a href="https://mastodon.social/tags/autoimmunememes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>autoimmunememes</span></a> <a href="https://mastodon.social/tags/fibromemes" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fibromemes</span></a> <a href="https://mastodon.social/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fibromyalgia</span></a> <a href="https://mastodon.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://mastodon.social/tags/alwaystired" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>alwaystired</span></a> <a href="https://mastodon.social/tags/fatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fatigue</span></a> <a href="https://mastodon.social/tags/chronicfatiguesyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatiguesyndrome</span></a> <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://mastodon.social/tags/sotired" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>sotired</span></a></p>
JB 🐎 :neuro:<p>The irony of being too exhausted to write a post for <a href="https://beige.party/tags/MEawarenessday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEawarenessday</span></a></p><p>THIS is why it isn’t spoken about more. </p><p>This is why the world isn’t more outraged by this debilitating illness’s lack of even one single basic treatment.</p><p>We need more advocates to help us raise awareness and petition governments to pledge more funding for research. Good studies need proper funding. Please talk to people about this illness, even if you don’t know anyone with it. 💗</p><p><a href="https://beige.party/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a> <a href="https://beige.party/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://beige.party/tags/myalgicencephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>myalgicencephalomyelitis</span></a> <a href="https://beige.party/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://beige.party/tags/MECFSawarenessday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFSawarenessday</span></a> <a href="https://beige.party/tags/WorldMEday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>WorldMEday</span></a></p>
Tom Kindlon<p>Country-by-Country Highlights for World ME Day 2025</p><p><a href="https://worldmealliance.org/2025/05/country-by-country-highlights-for-world-me-day-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">worldmealliance.org/2025/05/co</span><span class="invisible">untry-by-country-highlights-for-world-me-day-2025/</span></a></p><p><a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</span></a> <a href="https://disabled.social/tags/WorldMEDay" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>WorldMEDay</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><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></p>
Irish ME/CFS Association<p>11/<br>May is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Awareness Month, with May 12 being International ME/CFS Day.</p><p>You can help by sharing +/or liking this image.</p><p>Day #11</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/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</span></a> <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/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</span></a> <a href="https://mastodon.ie/tags/May12th" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12th</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>
Irish ME/CFS Association<p>11/</p><p><a href="https://mastodon.ie/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</span></a> 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> Day</p><p>&amp;</p><p>May is <a href="https://mastodon.ie/tags/MECFSawarenessmonth" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFSawarenessmonth</span></a></p><p>Please help by reposting and/or liking this 12-minute documentary which features Whitney Dafoe &amp; others</p><p><a href="https://www.youtube.com/watch?v=9_HwOUiImvw" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=9_HwOUiImv</span><span class="invisible">w</span></a></p><p><a href="https://mastodon.ie/tags/Day11" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Day11</span></a></p><p><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/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://mastodon.ie/tags/SevereMECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereMECFS</span></a><br><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/VerySevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>VerySevereME</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>
Tom Kindlon<p>It's great that the august CDC continues to highlight May 12, ME/CFS Awareness Day.</p><p><a href="https://www.cdc.gov/me-cfs/awareness-day/index.html" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">cdc.gov/me-cfs/awareness-day/i</span><span class="invisible">ndex.html</span></a></p><p>The provisional 2026 budget plans to scrap the CDC's ME/CFS research program. Hopefully lobbying will change this proposal.</p><p><a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</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><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></p>
Tom Kindlon<p>Well done to <span class="h-card" translate="no"><a href="https://mas.to/@invest_in_me_research" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>invest_in_me_research</span></a></span> for funding this UK research which will analyse the mucosal microbial communities, including viruses, bacteria and fungi</p><p><a href="https://quadram.ac.uk/blogs/research-exploring-the-role-of-viruses-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-introducing-dr-krishani-pereras-fellowship/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">quadram.ac.uk/blogs/research-e</span><span class="invisible">xploring-the-role-of-viruses-in-myalgic-encephalomyelitis-chronic-fatigue-syndrome-introducing-dr-krishani-pereras-fellowship/</span></a></p><p>"Many individuals with ME/CFS face severe mobility issues. This means we must prioritise patient accessibility and comfort when collecting samples, ensuring that our studies are as inclusive and accommodating as possible"</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><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></p>
Tom Kindlon<p>In an international survey (n=1534) <a href="https://www.mdpi.com/2075-4418/9/1/26" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">mdpi.com/2075-4418/9/1/26</span><span class="invisible"></span></a>, 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise).</p><p>Patients &amp; professionals should be informed of this risk.</p><p>Exertion has ruined some people's health</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><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></p>
JB 🐎 :neuro:<p>Going to use this as a publicly visible thread on how I’m finding the Visible armband in case it helps others. </p><p>Right now, I’m in the first 4 days where Visible ‘learns’ about me while I wear the armband. After that, it’ll give me more info, pacing alerts, etc. But I can already see some stats in the app that weren’t there before like heart rate, approximate exertion/rest zones. Already today, I’ve learned that showering in the morning uses much more exertion than I realised. So, I’m taking these insights on board to explore adapting my routines: time of day for the shower, using a shower seat, etc.</p><p>Very glad the armband is fully waterproof to be able to get these insights… but! Wearing a cold, wet armband for hours after a shower is not fun!!!! Argh! Will need to find a way to dry it, as this is one of the worst sensations and is making me cold very quickly.</p><p><a href="https://beige.party/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://beige.party/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://beige.party/tags/fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fibromyalgia</span></a> <a href="https://beige.party/tags/myalgicencephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>myalgicencephalomyelitis</span></a> <a href="https://beige.party/tags/chronicfatiguesyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicfatiguesyndrome</span></a></p>
Tom Kindlon<p>"Here are some new analyses from my lab that show elevated lactate in the ME/CFS brain" - Jarred Younger</p><p><a href="https://youtu.be/KDnKD5bpmb0" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">youtu.be/KDnKD5bpmb0</span><span class="invisible"></span></a></p><p>Screenshot is from the latest AMMES May newsletter</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><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></p>
Irish ME/CFS Association<p>7/</p><p>May is <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> (M.E.) Awareness Month.</p><p>You can help by sharing and/or liking this video. It's been approved for continuing medical education in the US<br><a href="https://youtu.be/RC9TjgE_PlU?si=wQzPnbfDibMzj7Oa" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/RC9TjgE_PlU?si=wQzPnb</span><span class="invisible">fDibMzj7Oa</span></a></p><p>Day 7 <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/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</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>
Tom Kindlon<p>(US)<br><a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a> 2025: Sending Out An SOS</p><p><a href="https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meaction.net/2025/04/02/millio</span><span class="invisible">nsmissing-2025-sending-out-an-sos/</span></a></p><p>Screenshot from the AMMES May email newsletter</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><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> <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/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</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></p>
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