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#pwme

27 posts8 participants3 posts today
Tom Kindlon<p>7/<br>3. Myth: You can exercise your way to recovery from ME.</p><p>Fact: Exercise can be dangerous for people with ME.</p><p><a href="https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">worldmealliance.org/2025/04/wo</span><span class="invisible">rld-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/</span></a></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/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <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" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>New US preprint:</p><p>Solriamfetol improves daily fatigue symptoms in adults with myalgic encephalomyelitis/chronic fatigue syndrome after eight weeks of treatment</p><p><a href="https://osf.io/preprints/psyarxiv/j6v5t_v1" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">osf.io/preprints/psyarxiv/j6v5</span><span class="invisible">t_v1</span></a></p><p>"demonstrated good safety and efficacy in improving fatigue &amp; executive functioning"</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>6/<br>3. Myth: You can exercise your way to recovery from ME.</p><p>Fact: Exercise can be dangerous for people with ME.</p><p><a href="https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">worldmealliance.org/2025/04/wo</span><span class="invisible">rld-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/</span></a></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/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <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" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>5/<br>Myth: ME is just about feeling tired<br>Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion.</p><p><a href="https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">worldmealliance.org/2025/04/wo</span><span class="invisible">rld-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/</span></a></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/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></p>
Tom Kindlon<p>How I treat my patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome (ME/CVS), fibromyalgia or “long COVID” by Prof. Frank Comhaire (in Belgium)</p><p><a href="https://jcimcr.org/pdfs/JCIMCR-v6-3508.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">jcimcr.org/pdfs/JCIMCR-v6-3508</span><span class="invisible">.pdf</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>Post Exertional Symptoms Are Similar in Male and Female Patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome</p><p><a href="https://scholarlycommons.pacific.edu/rcs/2025/events/84/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">scholarlycommons.pacific.edu/r</span><span class="invisible">cs/2025/events/84/</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>4/<br>Myth: ME is just about feeling tired<br>Fact: The defining symptom of ME is Post-Exertional Malaise (PEM) – an extreme worsening of symptoms after even minor physical or mental exertion.</p><p><a href="https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">worldmealliance.org/2025/04/wo</span><span class="invisible">rld-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/</span></a></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/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <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" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>UK:<br>ME/CFS &amp; Long COVID Stocktake documents (obtained under FOI from NHS England)</p><p><a href="https://1drv.ms/b/s!AoHfldspRkWU14RVP0Bvu9OTaHTy4A?e=JESZnt" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">1drv.ms/b/s!AoHfldspRkWU14RVP0</span><span class="invisible">Bvu9OTaHTy4A?e=JESZnt</span></a><br><a href="https://1drv.ms/b/s!AoHfldspRkWU14RUdGXkfB1t1oJNdA?e=wBtfML" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">1drv.ms/b/s!AoHfldspRkWU14RUdG</span><span class="invisible">XkfB1t1oJNdA?e=wBtfML</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener 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> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a><br> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener 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>🧵<br>Six Myths and Facts Everyone Should Know About Myalgic Encephalomyelitis (ME) </p><p><a href="https://worldmealliance.org/2025/04/world-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">worldmealliance.org/2025/04/wo</span><span class="invisible">rld-me-day-2025-six-myths-and-facts-everyone-should-know-about-myalgic-encephalomyelitis-me/</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><p>1/</p>
Tom Kindlon<p>Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis (N = 464 ME/CFS patients, N = 611 negative controls)</p><p>Free:<br><a href="https://www.medrxiv.org/content/10.1101/2025.04.15.25325899v1" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">medrxiv.org/content/10.1101/20</span><span class="invisible">25.04.15.25325899v1</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 found this blog post interesting.</p><p>The research found 3 themes relating to loneliness in chronic illness.</p><p>It then mentions a writing exercise one can do to analyse these in your own situation.</p><p><a href="https://www.psychologytoday.com/ie/blog/chronically-me/202504/the-link-between-loneliness-and-chronic-illness" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">psychologytoday.com/ie/blog/ch</span><span class="invisible">ronically-me/202504/the-link-between-loneliness-and-chronic-illness</span></a></p><p><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/chroniclife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chroniclife</span></a> <a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonielife</span></a> <a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hiddenillness</span></a> <a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>invisibleillness</span></a> <a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Spoonies</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/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> <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> <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/pots" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>pots</span></a></span> <a href="https://disabled.social/tags/dysautonomia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>dysautonomia</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/dysautonomia" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>dysautonomia</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><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/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>
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>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>
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>
Tom Kindlon<p>From ME Research UK:<br>A study in Germany has identified that 51.6% of participants who experience ME/CFS symptoms but who did not (yet) have an ME/CFS diagnosis met the Canadian Consensus Criteria for the disease. Read more: <a href="https://tinyurl.com/344t4kty" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">tinyurl.com/344t4kty</span><span class="invisible"></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/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/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Will 🏳️‍🌈<p>My body pain is rather curious. I'm not sure how long it's been going on at this constant level, but I think far shorter than the time I've been diagnosed with fibromyalgia or ME/CFS.</p><p>No matter how much I stretch, take hot showers, or use heating pads to leech the pain away, it doesn't reduce even slightly. It's like I'm trying to escape my body, but the skin refuses.</p><p>And the much-vaunted "just exercise to get healthier" is as unattainable as anything I can imagine.</p><p>Relatable?</p><p><a href="https://mindly.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <a href="https://mindly.social/tags/Fibromyalgia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Fibromyalgia</span></a> <a href="https://mindly.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://mindly.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</span></a></p>
Tom Kindlon<p>Crowdfunding for David Tuller's work reported on ME, ME/CFS, Long Covid, &amp; so on...</p><p><a href="https://crowdfund.berkeley.edu/project/46120" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">crowdfund.berkeley.edu/project</span><span class="invisible">/46120</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> <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> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a> <span class="h-card" translate="no"><a href="https://trialbyerror.org/author/david/" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>david</span></a></span></p>
Tom Kindlon<p>"Could GP's understanding and management of Long Covid and ME be improved by conceptualising those conditions in terms of 'premature frailty'?" by Dr Elke Hausmann</p><p><a href="https://bjgplife.com/could-gps-understanding-and-management-of-long-covid-and-me-be-improved-by-conceptualising-those-conditions-in-terms-of-premature-frailty/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bjgplife.com/could-gps-underst</span><span class="invisible">anding-and-management-of-long-covid-and-me-be-improved-by-conceptualising-those-conditions-in-terms-of-premature-frailty/</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> <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> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a></p>
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