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#MyalgicEncephalomyelitis

25 posts11 participants2 posts today
Tom Kindlon<p>(Worcester, Massachusetts)<br>Healthy Controls and people aged 12+ with ME/CFS, <a href="https://disabled.social/tags/POTS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>POTS</span></a>, <a href="https://disabled.social/tags/EDS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>EDS</span></a>, long Covid, etc sought for research study</p><p>Image is from MassME April Newsletter</p><p><a href="https://www.massmecfs.org/newsletters/922-2025-04-april-newsletter" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">massmecfs.org/newsletters/922-</span><span class="invisible">2025-04-april-newsletter</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> <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><a href="https://disabled.social/tags/PosturalOrthostaticTachycardiaSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PosturalOrthostaticTachycardiaSyndrome</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> <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>One month to go to International ME/CFS Awareness Day (May 12)</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>"Suzanne O’Sullivan’s “Psychosomatic” Mis-Diagnoses" by Dr David Tuller <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><p><a href="https://virology.ws/2025/04/10/trial-by-error-suzanne-osullivans-psychosomatic-mis-diagnoses/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">virology.ws/2025/04/10/trial-b</span><span class="invisible">y-error-suzanne-osullivans-psychosomatic-mis-diagnoses/</span></a></p><p>People can support David's work here:<br><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><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> <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/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><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>"We set out to make our ‘invisible illness’ visible in South Africa with SICK Pride"</p><p><a href="https://thesicktimes.org/2024/11/05/we-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2024/11/05/we</span><span class="invisible">-set-out-to-make-our-invisible-illness-visible-in-south-africa-with-sick-pride/</span></a></p><p>Image is from April 2025 AMMES 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> <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><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></p>
Irish ME/CFS Association<p>Informal notes of Tom Kindlon <span class="h-card" translate="no"><a href="https://disabled.social/@tomkindlon" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>tomkindlon</span></a></span> (an Irish ME/CFS Association trustee) on a Community Law &amp; Mediation webinar, “Housing supports for people with disabilities”, organised by the Irish ME Trust in April 2025</p><p><a href="https://1drv.ms/b/s!AoHfldspRkWU14Fk8PxsH7FEHN1k3w?e=MvdxKH" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">1drv.ms/b/s!AoHfldspRkWU14Fk8P</span><span class="invisible">xsH7FEHN1k3w?e=MvdxKH</span></a></p><p><a href="https://mastodon.ie/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <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/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>"Sister of bedbound ME sufferer urges more funding"</p><p><a href="https://www.bbc.com/news/articles/cd9lll0xk1xo" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">bbc.com/news/articles/cd9lll0x</span><span class="invisible">k1xo</span></a></p><p>Sympathetic coverage of a tragic case of very severe ME.</p><p>This was new to me:<br>"a new tool called digiTherapix which can track and record a patient's movement in real time at home"</p><p><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</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>From&nbsp;M.E Support Northern Ireland</p><p>Free Zoom event on ME with Dr. Night Speight, consultant paediatrician, on Thursday, April 17.</p><p>Click here to register: <a href="https://forms.office.com/e/KCM9MCNdWg" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">forms.office.com/e/KCM9MCNdWg</span><span class="invisible"></span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><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>New US research:</p><p>Identifying commonalities &amp; differences between EHR representations of <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> &amp; ME/CFS in the RECOVER EHR cohort</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>"These findings suggest symptom management approaches to these illnesses could overlap"</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/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/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/covid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>covid19</span></a></span> <a href="https://disabled.social/tags/Coronavirus" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Coronavirus</span></a><br><a href="https://disabled.social/tags/COVID19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVID19</span></a> <a href="https://disabled.social/tags/COVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVID</span></a> <a href="https://disabled.social/tags/COVID_19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVID_19</span></a> <a href="https://disabled.social/tags/COVID%E3%83%BC19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDー19</span></a> <a href="https://disabled.social/tags/SARSCoV2" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SARSCoV2</span></a></p>
Tom Kindlon<p>NOTICE: 2025 IACFS/ME Conference Changed to Virtual Format!</p><p>October 22 - 25, 2025 Online</p><p><a href="https://www.iacfsme.org/2023-conference-main-page-copy-2-copy/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">iacfsme.org/2023-conference-ma</span><span class="invisible">in-page-copy-2-copy/</span></a></p><p>[Image is from an email that has just gone out to people on their mailing list]</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>Solve M.E. Annual Advocacy Week</p><p>Links:<br><a href="https://solvecfs.org/advocacy/advocacy-week/advocacyweek2025" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/advocacy/advocacy</span><span class="invisible">-week/advocacyweek2025</span></a><br><a href="https://lobbydayregistration.wufoo.com/forms/m1m4lhqe1sjot7j" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">lobbydayregistration.wufoo.com</span><span class="invisible">/forms/m1m4lhqe1sjot7j</span></a></p><p>Image is from MassME April Newsletter</p><p><a href="https://www.massmecfs.org/newsletters/922-2025-04-april-newsletter" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">massmecfs.org/newsletters/922-</span><span class="invisible">2025-04-april-newsletter</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> <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>
Tom Kindlon<p>"Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards"</p><p>Also covers ME/CFS</p><p><a href="https://time.com/7206080/long-covid-psychiatric-wards/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">time.com/7206080/long-covid-ps</span><span class="invisible">ychiatric-wards/</span></a></p><p>Image is from April 2025 AMMES Newsletter</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></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>More bad news for those interested in ME/CFS research it seems: Cornell funds suspended ☹️</p><p>"Trump administration’s attack on university research accelerates"</p><p><a href="https://arstechnica.com/science/2025/04/trump-administrations-attack-on-university-research-accelerates/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">arstechnica.com/science/2025/0</span><span class="invisible">4/trump-administrations-attack-on-university-research-accelerates/</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>ME/CFS – The Devastating Chronic Disease - With No Cure</p><p>Free<br><a href="https://biomedres.us/fulltexts/BJSTR.MS.ID.009536.php" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">biomedres.us/fulltexts/BJSTR.M</span><span class="invisible">S.ID.009536.php</span></a></p><p>"Industry respect &amp; legislation support so urgently needed to fund dedicated research for effective treatments &amp; potentially a substantiated cure for the many suffering in silence"</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>Light biographical piece about Clayton Powers. </p><p>I had seen him in Bateman Horne Center videos but never knew anything about him personally so nice to be able to read this.</p><p>Note: No real new health information in this.</p><p><a href="https://uofuhealth.utah.edu/made-better-by-you/stories/clayton-powers" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">uofuhealth.utah.edu/made-bette</span><span class="invisible">r-by-you/stories/clayton-powers</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> <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/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span></p>
Irish ME/CFS Association<p>Informal notes of Tom Kindlon <span class="h-card" translate="no"><a href="https://disabled.social/@tomkindlon" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>tomkindlon</span></a></span> (an Irish ME/CFS Association trustee) on a Community Law &amp; Mediation webinar, “Housing supports for people with disabilities”, organised by the Irish ME Trust in April 2025</p><p><a href="https://1drv.ms/b/s!AoHfldspRkWU14Fk8PxsH7FEHN1k3w?e=MvdxKH" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">1drv.ms/b/s!AoHfldspRkWU14Fk8P</span><span class="invisible">xsH7FEHN1k3w?e=MvdxKH</span></a></p><p><a href="https://mastodon.ie/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <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/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>
ahimsa<p><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>Reminder: Two planning meetings for <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow! </p><p><a href="https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meaction.net/2025/04/08/why-we</span><span class="invisible">re-sending-out-an-sos-this-millionsmissing/</span></a></p><p>Here's how to sign up</p><p>Meeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern</p><p><a href="https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">us06web.zoom.us/meeting/regist</span><span class="invisible">er/EHwZzzubSpqIi31vM1VRNQ#/registration</span></a></p><p>Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern</p><p><a href="https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">us06web.zoom.us/meeting/regist</span><span class="invisible">er/2hriH4c1RU6VbSGbEBrjHA#/registration</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> </p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</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/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAwareness</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/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</span></a></p>
Tom Kindlon<p>A Systems-Based Hypothesis for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Phosphatidylcholine Deficiency, Insulin Signaling and Noradrenergic Neuron Dysregulation</p><p>Image is from latest Science for ME weekly update</p><p><a href="https://www.preprints.org/manuscript/202409.1467/v2" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">preprints.org/manuscript/20240</span><span class="invisible">9.1467/v2</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>"'It’s like torture': The tilt table test could be risky for many people with Long COVID" [and ME/CFS] in <span class="h-card" translate="no"><a href="https://mastodon.social/@thesicktimes" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>thesicktimes</span></a></span> </p><p><a href="https://thesicktimes.org/2025/04/08/its-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/04/08/it</span><span class="invisible">s-like-torture-the-tilt-table-test-could-be-risky-for-many-people-with-long-covid/</span></a></p><p>Contains quotes from patients and also some experts in the field</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> <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> <a href="https://disabled.social/tags/PosturalOrthostaticTachycardiaSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PosturalOrthostaticTachycardiaSyndrome</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/OI" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>OI</span></a> <a href="https://disabled.social/tags/OrthostaticIntolerance" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>OrthostaticIntolerance</span></a></p>
Tom Kindlon<p>April International Research and Advocacy Roundup</p><p><a href="https://www.emerge.org.au/news/april-2025-international-research-and-advocacy-roundup/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">emerge.org.au/news/april-2025-</span><span class="invisible">international-research-and-advocacy-roundup/</span></a></p><p>The image is only a summary of the piece, not the full item</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>
Tom Kindlon<p>NINDS-Supported Biospecimen Repositories</p><p><a href="https://www.neurology.org/doi/10.1212/WNL.0000000000210368" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">neurology.org/doi/10.1212/WNL.</span><span class="invisible">0000000000210368</span></a></p><p>"collections include Parkinson’s Disease, Lewy Body Dementia, Huntington’s Disease, Myalgic Encephalomyelitits/Chronic Fatigue Syndrome, Frontotemporal Dementia, Spinocerebellar Ataxia, &amp; Traumatic Brain Injury"</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>
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