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#LivingWithME

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Tom Kindlon<p>2/<br>Maeve Boothby-O'Neill died aged 27 at home in Exeter in October 2021. A recent legal hearing into Maeve's death heard there was a gap in NHS services for severely ill ME patients."</p><p>3-minute TV clip:<br><a href="https://youtu.be/pkyU41BHgnM?si=z9-2HJAx710bqfRq" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/pkyU41BHgnM?si=z9-2HJ</span><span class="invisible">Ax710bqfRq</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/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/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/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</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/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</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/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><br><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/EndMECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EndMECFS</span></a> <a href="https://disabled.social/tags/SystemicExertionIntoleranceDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SystemicExertionIntoleranceDisease</span></a><br><a href="https://disabled.social/tags/MEawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEawareness</span></a> <a href="https://disabled.social/tags/livingwithME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>livingwithME</span></a> <a href="https://disabled.social/tags/CanYouSeeMENow" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CanYouSeeMENow</span></a></p>
Tom Kindlon<p>2/</p><p>“Living with chronic fatigue syndrome (CFS) is like being erased. It rubs out what my brain and body can do, turning me into a reduced version of myself.”</p><p>“Having CFS is like being a dormant seed, waiting for just enough energy to come alive.”</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> <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/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/MyalgicE" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicE</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/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</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/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><br><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/EndMECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EndMECFS</span></a> <a href="https://disabled.social/tags/SystemicExertionIntoleranceDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SystemicExertionIntoleranceDisease</span></a><br><a href="https://disabled.social/tags/MEawareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEawareness</span></a> <a href="https://disabled.social/tags/livingwithME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>livingwithME</span></a> <a href="https://disabled.social/tags/CanYouSeeMENow" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CanYouSeeMENow</span></a></p>
Archie<p>This article on PEM is free to read until around 2pm (BST) tomorrow I’ve read it and it feels like it accurately describes what it’s like <a href="https://weirder.earth/tags/LivingWithME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithME</span></a>. (And also how underfunded ME research is and how badly we can be treated by medical professionals who are woefully ill-educated on the subject.)</p><p><a href="https://www.theatlantic.com/health/archive/2023/07/chronic-fatigue-long-covid-symptoms/674834/" rel="nofollow noopener noreferrer" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">theatlantic.com/health/archive</span><span class="invisible">/2023/07/chronic-fatigue-long-covid-symptoms/674834/</span></a></p>
Gwenfar :plantmage6:<p>Today I'm attempting to 'leave the gardening to the gardener I'm paying'. My new gardener, Kathryn, is great, but I feel guilty about leaving so much to them, so last time they were here, I pushed myself to do too much gardening myself &amp; really paid for it. Kind of negating the whole point of paying someone because I'm not well enough to do much myself...</p><p>Wish me luck!</p><p><a href="https://rage.love/tags/LivingWithME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LivingWithME</span></a> <a href="https://rage.love/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://rage.love/tags/GardeningWithME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>GardeningWithME</span></a> <a href="https://rage.love/tags/Gardening" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Gardening</span></a></p>
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