Andrew Gifford<p>From ThereForME: </p><p>"If you're in England, Wales, or Northern Ireland, living (or caring for someone) with Long Covid or ME/CFS and receiving PIP, UC, or ESA, we want to hear from you."</p><p><a href="https://docs.google.com/forms/d/e/1FAIpQLSelDC00Dul6_PiiBEZrAPHgG0HFdp8x9YtpBw9LwFGmIOkhJQ/viewform" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">docs.google.com/forms/d/e/1FAI</span><span class="invisible">pQLSelDC00Dul6_PiiBEZrAPHgG0HFdp8x9YtpBw9LwFGmIOkhJQ/viewform</span></a></p><p><a href="https://mastodon.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</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/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.social/tags/ThereForME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ThereForME</span></a> <a href="https://mastodon.social/tags/Welfare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Welfare</span></a> <a href="https://mastodon.social/tags/PIP" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PIP</span></a> <a href="https://mastodon.social/tags/DWP" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DWP</span></a> <a href="https://mastodon.social/tags/DisabilityBenefits" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DisabilityBenefits</span></a></p>
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#mecfs
83 posts · 42 participants · 3 posts today
Dr Ro Smith<p><a href="https://wandering.shop/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://wandering.shop/tags/Meditation" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Meditation</span></a> hey, so, I have been loving Insight Timer as a free app that has loads of yoga nidra and shavayatra meditations, but they have started really forcing the idea of setting an 'intention', and now it's dominating the home screen as well as giving me frequent prompts to 'reflect'.</p><p>I strongly don't like the intention aspect and this is completely putting me off. Can anyone suggest a *free* app that does something similar (hosts guided meditations and sleep music)?</p><p>Not Calm.</p>
Anti. 🐘<p>Research Update:</p><p>· Three studies highlight the long-term effects of <a href="https://chaos.social/tags/COVID19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVID19</span></a> on children’s brains, kidneys, and cardiovascular systems<br>· Electronic health records of 6.5 million people showed notable differences and similarities between <a href="https://chaos.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> and <a href="https://chaos.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> myalgic encephalomyelitis (ME)<br>· NIH study assesses if the tracer 11C-PS13 — a molecule injected into the body before an imaging scan — can help identify inflammation in people with neurological Long COVID</p><p><a href="https://thesicktimes.org/2025/04/15/research-updates-april-15/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/04/15/re</span><span class="invisible">search-updates-april-15/</span></a></p>
Tom Kindlon<p>Here is a better picture:<br><a href="https://www.picture-alliance.com/search/images(popup:image/388749320)?searchTerm=fc%20st%20pauli&page=7&size=small&layout=mosaic" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">picture-alliance.com/search/im</span><span class="invisible">ages(popup:image/388749320)?searchTerm=fc%20st%20pauli&page=7&size=small&layout=mosaic</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> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs_de" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs_de</span></a></span></p>
Irish ME/CFS Association<p>8/<br>Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<br>(Page 3 of 8)<br><a href="https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2823%2900402-0" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">mayoclinicproceedings.org/acti</span><span class="invisible">on/showPdf?pii=S0025-6196%2823%2900402-0</span></a></p><p>One of the fact sheets we sent to 3612 Irish GPs recently</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> <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>An example of the thoughtless or insensitive comments people with chronic illnesses can sometimes hear</p><p>From a blog post by an Irish woman with ME who has become a published writer<br><a href="https://solongasicanbreathe.wordpress.com/2025/04/14/walking-ambling-stumbling/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solongasicanbreathe.wordpress.</span><span class="invisible">com/2025/04/14/walking-ambling-stumbling/</span></a></p><p><a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <br><a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <br><a href="https://disabled.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <br><a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonielife</span></a> <br><a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <br><a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <br><a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllnesses</span></a> <br><a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</span></a><br><a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonie</span></a><br><a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicallyIll</span></a><br><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/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>2.<br>They were given £5 million of taxpayers' money to do the trial & published a protocol listing the results they would publish. However after the trial ended they changed the criteria in a ridiculous way & wouldn't release the data for the more robust recovery criteria they had committed to publish on</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/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
Tom Kindlon<p>Trial By Error: My Visits with Alem Matthees, 2025<br><a href="https://virology.ws/2025/04/14/trial-by-error-my-visits-with-alem-matthees-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">virology.ws/2025/04/14/trial-b</span><span class="invisible">y-error-my-visits-with-alem-matthees-2025/</span></a></p><p>Explains the heroic work Alem did, the effect on the <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> medical scene of his work but also the health effects Alem suffered as a result, as he now tragically lives with <a href="https://disabled.social/tags/verysevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>verysevereME</span></a>. 😢</p><p>This could have been prevented if the PACE trial authors had released the data! 😡</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>
Gravitation<p>Does anyone here know a heart rate pacing app for smartwatch that doesn't share any data? I just want it to vibrate when I'm over 90 bpm...</p><p><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> <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://norden.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://norden.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://norden.social/tags/PostCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovid</span></a></p>
Tom Kindlon<p>2/<br>Identifying commonalities and differences between EHR representations of PASC and ME/CFS in the RECOVER EHR cohort</p><p>CP = computable phenotype</p><p><a href="https://www.nature.com/articles/s43856-025-00827-5" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">nature.com/articles/s43856-025</span><span class="invisible">-00827-5</span></a></p><p>Image is from latest Science for ME weekly update</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/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener 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> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/covid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>covid19</span></a></span></p>
Tom Kindlon<p><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> is planning a protest in Washington, DC, on Monday, May 12 for Millions Missing 2025</p><p><a href="https://www.meactions.org/millionsmissing2025" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meactions.org/millionsmissing2</span><span class="invisible">025</span></a></p><p>Image is from 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>"Sleeping Well with Chronic Illness" by Ciara Breen. This was organised by the Irish ME Trust</p><p>Recording here:<br><a href="https://youtu.be/15SuEe5UlUY" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">youtu.be/15SuEe5UlUY</span><span class="invisible"></span></a></p><p>Slides here:<br><a href="https://1drv.ms/p/s!AoHfldspRkWU14MZ3X5c8Vz4gr5-VA?e=Pm6gIx" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">1drv.ms/p/s!AoHfldspRkWU14MZ3X</span><span class="invisible">5c8Vz4gr5-VA?e=Pm6gIx</span></a></p><p>My informal notes:<br><a href="https://1drv.ms/b/s!AoHfldspRkWU14MsVPPzR94Y4UmWqw?e=d5pKRg" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">1drv.ms/b/s!AoHfldspRkWU14MsVP</span><span class="invisible">PzR94Y4UmWqw?e=d5pKRg</span></a></p><p><a href="https://disabled.social/tags/Sleep" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Sleep</span></a> <a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</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/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/fibromyalgia" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>fibromyalgia</span></a></span><br><a href="https://disabled.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibromyalgia</span></a> <a href="https://disabled.social/tags/Fibro" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibro</span></a> <a href="https://disabled.social/tags/FMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FMS</span></a> <a href="https://disabled.social/tags/FM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>FM</span></a></p>
Tom Kindlon<p>Large conference in Stavanger, Norway in May</p><p><a href="https://www.mekonferanse.no/en/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">mekonferanse.no/en/</span><span class="invisible"></span></a></p><p>Recordings of the May 8 activities will later be shared on our YouTube channel</p><p>Image is from 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> <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>
ahimsa<p>I ran out of room but I want to add here that there's a global toolkit with ideas for folks outside the USA:</p><p><a href="https://docs.google.com/document/d/1kgu8uA6pxxGaIN8UBRX9rgC6Z4deom9gredqsBNDngI/edit?tab=t.0" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">docs.google.com/document/d/1kg</span><span class="invisible">u8uA6pxxGaIN8UBRX9rgC6Z4deom9gredqsBNDngI/edit?tab=t.0</span></a></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/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a><br><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a></p>
ahimsa<p>I encourage patients and allies who are feeling discouraged to join the Millions Missing 2025 campaign:</p><p><a href="https://www.meactions.org/millionsmissing2025" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meactions.org/millionsmissing2</span><span class="invisible">025</span></a></p><p>The SOS theme = "Save our support systems. Save our science. Save our society."</p><p>The main event is a protest on May 12 in Washington, DC. There'll be smaller events across the US. Or schedule a meeting with your local congress rep</p><p>Can't attend in person? Join in online on May 12</p><p>See the link for more ideas</p><p><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>USPol</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/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</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/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> <a href="https://disabled.social/tags/Resist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Resist</span></a></p>
ahimsa<p>Encouraging quote from Jamie Seltzer of <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> -</p><p>“MECFS researchers and advocates have been managing to do the impossible with next to nothing, and we will continue to do so ... </p><p>So for all of those folks with long COVID out there who are looking at this and feeling in despair, we have been here before and we have persisted … </p><p>We are unlikely to snap our fingers and find a cure, but that was always true, and advocates are going to keep fighting.”</p><p><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/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/HealthCare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HealthCare</span></a> <a href="https://disabled.social/tags/Resist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Resist</span></a></p>
ahimsa<p>I think I've already posted this but it's worth re-posting:</p><p>"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"</p><p><a href="https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">salon.com/2025/04/01/admins-on</span><span class="invisible">-chronic-disease-research-abandons-long-and-mecfs-patients-again/</span></a></p><p>"Budget cuts and the dismantling of federal agencies are making it harder for patients with long COVID and ME/CFS"</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> <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><p>Edit: added hashtag</p><p><a href="https://disabled.social/tags/USPol" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>USPol</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/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a></p>
Ahimsa<p>Here's the latest News in Brief (April 7 - 13), a weekly summary of ME/CFS and Long Covid news from the Science for ME forum:
<a href="https://www.s4me.info/threads/news-in-brief-april-2025.43486/#post-601070" rel="nofollow noopener noreferrer" target="_blank">www.s4me.info/threads/news...</a>
<a class="hashtag" href="https://bsky.app/search?q=%23MEcfs" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a class="hashtag" href="https://bsky.app/search?q=%23LongCovid" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a class="hashtag" href="https://bsky.app/search?q=%23ChronicIllness" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a class="hashtag" href="https://bsky.app/search?q=%23Science4ME" rel="nofollow noopener noreferrer" target="_blank">#Science4ME</a><br><br><a href="https://www.s4me.info/threads/news-in-brief-april-2025.43486/#post-601070" rel="nofollow noopener noreferrer" target="_blank">News in Brief - April 2025</a></p>
ahimsa<p>Here's the latest News in Brief (April 7 - 13), a weekly summary of ME/CFS and Long Covid news from the Science for ME forum:</p><p><a href="https://www.s4me.info/threads/news-in-brief-april-2025.43486/#post-601070" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/news-in-brie</span><span class="invisible">f-april-2025.43486/#post-601070</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> <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><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/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://disabled.social/tags/Science4ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Science4ME</span></a></p>
Irish ME/CFS Association<p>7/<br>Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome<br>(Page 2 of 8)<br><a href="https://www.mayoclinicproceedings.org/action/showPdf?pii=S0025-6196%2823%2900402-0" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">mayoclinicproceedings.org/acti</span><span class="invisible">on/showPdf?pii=S0025-6196%2823%2900402-0</span></a></p><p>One of the fact sheets we sent to 3612 Irish GPs recently</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> <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>
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