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>
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#SevereME
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Anna<p>In case it was missed in the post above, this is my updated article:</p><p>👉 <a href="https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thecanary.co/global/world-anal</span><span class="invisible">ysis/2025/04/01/anna-severe-me-cfs/</span></a></p><p>My doctor predicts I will die if I don’t leave soon. </p><p>I need a solid, safe, home I can go to and recover to at least a stable baseline. It’s not full recovery, but it’s better than a slow death.</p><p>Help please 🙏 </p><p><a href="https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thecanary.co/global/world-anal</span><span class="invisible">ysis/2025/04/01/anna-severe-me-cfs/</span></a></p><p><a href="https://aus.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://aus.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://aus.social/tags/Hypothyroidism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Hypothyroidism</span></a> <a href="https://aus.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://aus.social/tags/Neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Neisvoid</span></a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Abuse</span></a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Housing</span></a> <a href="https://aus.social/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Dysautonomia</span></a> <a href="https://aus.social/tags/SocialWork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SocialWork</span></a> <a href="https://aus.social/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedMastodon</span></a> <a href="https://aus.social/tags/PWLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PWLC</span></a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MutualAid</span></a> <br><a href="https://aus.social/tags/HumanRights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HumanRights</span></a> <a href="https://aus.social/tags/Press" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Press</span></a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Housing</span></a> <a href="https://aus.social/tags/Journalism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Journalism</span></a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://aus.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Abuse</span></a> <a href="https://aus.social/tags/Neglect" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Neglect</span></a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MutualAid</span></a> <a href="https://aus.social/tags/Narcissist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Narcissist</span></a> <a href="https://aus.social/tags/Psychopath" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Psychopath</span></a> <a href="https://aus.social/tags/Endometriosis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Endometriosis</span></a> <a href="https://aus.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicPain</span></a> <a href="https://aus.social/tags/CostOfLivingCrisis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CostOfLivingCrisis</span></a> <a href="https://aus.social/tags/Melbourne" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Melbourne</span></a> <a href="https://aus.social/tags/Australia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Australia</span></a> <a href="https://aus.social/tags/DomesticAbuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DomesticAbuse</span></a> <a href="https://aus.social/tags/DV" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DV</span></a></p><p><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> <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/neisvoid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>neisvoid</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disabilityjustice" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>disabilityjustice</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>disability</span></a></span> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/socialwork" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>socialwork</span></a></span> <br><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/mutualaid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mutualaid</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><span class="h-card" translate="no"><a href="https://a.gup.pe/u/chronicpain" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>chronicpain</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mcas" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mcas</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/australia" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>australia</span></a></span> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/melbourne" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>melbourne</span></a></span></p>
Anna<p>PLEASE HELP ME ESCAPE!</p><p>Please <a href="https://aus.social/tags/boost" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>boost</span></a> and share to other platforms.🙏I don’t have energy left (see below).</p><p>Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.</p><p>👉Last year:<br><a href="https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thecanary.co/global/world-anal</span><span class="invisible">ysis/2024/05/03/me-cfs-anna-australia/</span></a></p><p>Now things are worse, I’m much sicker, being neglected and will die without a safe stable <a href="https://aus.social/tags/home" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>home</span></a>. Doctor’s words.</p><p>If not mentioned in the article, my father is a diagnosed <a href="https://aus.social/tags/narcissist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>narcissist</span></a> with <a href="https://aus.social/tags/psychopathic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>psychopathic</span></a> & <a href="https://aus.social/tags/antisocial" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>antisocial</span></a> tendencies by a <a href="https://aus.social/tags/psychiatrist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>psychiatrist</span></a>. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of <a href="https://aus.social/tags/illness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>illness</span></a>.</p><p>👉A year later:<br><a href="https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thecanary.co/global/world-anal</span><span class="invisible">ysis/2025/04/01/anna-severe-me-cfs/</span></a></p><p>I’ve tried every level of government, every service and they simply won’t help. </p><p>Are able help? Please ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small rent)? A lot people have ‘big house, not enough money’ problem. I can help!</p><p>Is anybody an <a href="https://aus.social/tags/advocate" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>advocate</span></a>? I desperately need help. </p><p>I would be incredibly grateful for any help beyond words.🙏</p><p>Please read articles for full information.</p><p>Thank you for reading.</p><p><a href="https://aus.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://aus.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://aus.social/tags/Hypothyroidism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Hypothyroidism</span></a> <a href="https://aus.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicIllness</span></a> <a href="https://aus.social/tags/Neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Neisvoid</span></a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Abuse</span></a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Housing</span></a> <a href="https://aus.social/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Dysautonomia</span></a> <a href="https://aus.social/tags/SocialWork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SocialWork</span></a> <a href="https://aus.social/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedMastodon</span></a> <a href="https://aus.social/tags/PWLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PWLC</span></a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MutualAid</span></a> <br><a href="https://aus.social/tags/HumanRights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>HumanRights</span></a> <a href="https://aus.social/tags/Press" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Press</span></a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Housing</span></a> <a href="https://aus.social/tags/Journalism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Journalism</span></a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://aus.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Abuse</span></a> <a href="https://aus.social/tags/Neglect" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Neglect</span></a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MutualAid</span></a> <a href="https://aus.social/tags/Narcissist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Narcissist</span></a> <a href="https://aus.social/tags/Psychopath" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Psychopath</span></a></p>
Tom Kindlon<p>44-minute Learn about ME podcast: Episode 12 – Learn about Severe ME</p><p>Audio and transcript:<br><a href="https://www.buzzsprout.com/1717775/episodes/16875047-episode-12-learn-about-severe-me" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">buzzsprout.com/1717775/episode</span><span class="invisible">s/16875047-episode-12-learn-about-severe-me</span></a></p><p>I haven't listened myself so far but I'm hopeful it's good.</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>4/<br>Part 2 of 2<br>It may be easier to read it this way<br><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a><br><a href="https://disabled.social/tags/VerySevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>VerySevereME</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
Irish ME/CFS Association<p>Lee is fundraising for ME again. 👏</p><p>Read more including the tragic tale of his late brother Josh who had <a href="https://mastodon.ie/tags/severeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>severeME</span></a> here <a href="https://awalkforme.com/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">awalkforme.com/</span><span class="invisible"></span></a></p><p>People can support his fundraising for us here <a href="https://www.idonate.ie/fundraiser/LeeColligan" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">idonate.ie/fundraiser/LeeColli</span><span class="invisible">gan</span></a><br>or <br>alternatively Action for ME <a href="https://joshcolligan.muchloved.com/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">joshcolligan.muchloved.com/</span><span class="invisible"></span></a></p><p><a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</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>
Donia 🖖♾️ ♿️<p>It’s a very difficult day(/week/year) in so many ways for so many of us (especially those of us who are disabled &/or rely on social security for literal survival)</p><p>So here’s my little weirdo of a black cat to hopefully give you a smile 💙 🐈⬛</p><p><a href="https://mastodon.social/tags/Cat" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Cat</span></a> <a href="https://mastodon.social/tags/Caturday" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Caturday</span></a> <a href="https://mastodon.social/tags/blackcat" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>blackcat</span></a> <a href="https://mastodon.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</span></a> <a href="https://mastodon.social/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://mastodon.social/tags/socialsecurity" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>socialsecurity</span></a> <a href="https://mastodon.social/tags/severeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>severeME</span></a> <a href="https://mastodon.social/tags/myalgicencephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>myalgicencephalomyelitis</span></a> <a href="https://mastodon.social/tags/disabilityrights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityrights</span></a> <a href="https://mastodon.social/tags/MedicaidWorks" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MedicaidWorks</span></a></p>
Tom Kindlon<p>4/</p><p>From "Shame, Psychology and ME" by Richard and Katharine Cheston</p><p><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>3/<br>From "Shame, Psychology and ME" by Richard and Katharine Cheston</p><p><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</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>
Fatigatio e.V.<p>Eine Vertretung des Fatigatio e.V. war aktiv am <a href="https://mastodon.social/tags/Partizipationsprozess" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Partizipationsprozess</span></a> (u.a. Workshops) beteiligt, um die Versorgung von Betroffenen zu verbessern. Ziel: Gemeinsame Lösungsfindung für eine bessere Versorgung von Kindern & Jugendlichen.</p><p>Fokus-Thema hier: Entwicklung spezialisierter <a href="https://mastodon.social/tags/PAIS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PAIS</span></a>-Zentren für vernetzte, interdisziplinäre Behandlungen.</p><p>Insgesamt wurden 9 gemeinsam entwickelte Handlungsansätze kürzlich an das <a href="https://mastodon.social/tags/BMG" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>BMG</span></a> übergeben.</p><p><a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://mastodon.social/tags/severeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>severeME</span></a> <a href="https://mastodon.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</span></a></p><p>Alle Infos dazu: <a href="https://www.fatigatio.de/aktuelles/detail/bmg-initiative-partizipationsprozess-versorgung-kinder-und-jugendliche-long-covid-me-cfs" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">fatigatio.de/aktuelles/detail/</span><span class="invisible">bmg-initiative-partizipationsprozess-versorgung-kinder-und-jugendliche-long-covid-me-cfs</span></a></p>
Tom Kindlon<p>Video Series: Severe ME/CFS: Care, Rights, and Research</p><p>Links:<br><a href="https://solvecfs.org" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">solvecfs.org</span><span class="invisible"></span></a><br><a href="https://batemanhornecenter.org/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">batemanhornecenter.org/</span><span class="invisible"></span></a><br><a href="https://www.youtube.com/playlist?list=PLbO5abv0daLWxpsDsRrOYq7PGxiHD0P6t" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/playlist?list=PLbO</span><span class="invisible">5abv0daLWxpsDsRrOYq7PGxiHD0P6t</span></a></p><p>Image from Massachusetts ME/CFS & FM Association March 2025 e-newsletter:<br><a href="https://massmecfs.org/newsletters/919-2025-03-march-newsletter" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">massmecfs.org/newsletters/919-</span><span class="invisible">2025-03-march-newsletter</span></a></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>Now I've had <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> 36 years (since age 16), 30 years with <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a>🙁</p><p>We need more public & private* research money to speed up progress</p><p>Here's my story in Irish Independent <a href="https://m.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">m.independent.ie/life/health-w</span><span class="invisible">ellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill/34153140.html</span></a></p><p>*List of research funds<br><a href="https://phoenixrising.me/myalgic-encephalomyelitis-chronic-fatigue-syndrome-mecfs-resources/research-charities/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">phoenixrising.me/myalgic-encep</span><span class="invisible">halomyelitis-chronic-fatigue-syndrome-mecfs-resources/research-charities/</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>The local Swedish newspaper ST-tidningen writes about Jessika who suffers from severe ME and is fighting a long and hard battle to get basic and necessary care.</p><p>Google translation<br><a href="https://www-sttidningen-se.translate.goog/nyheter/stenungsund/me-sjuka-jessika-jag-ligger-har-och-sakta-dor.a35d1323-9fa9-4da4-97d8-3a37ff9d02e3?access=unknown&_x_tr_sl=sv&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">www-sttidningen-se.translate.g</span><span class="invisible">oog/nyheter/stenungsund/me-sjuka-jessika-jag-ligger-har-och-sakta-dor.a35d1323-9fa9-4da4-97d8-3a37ff9d02e3?access=unknown&_x_tr_sl=sv&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp&_x_tr_hist=true</span></a></p><p><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</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>
Colin-Roy Hunter<p>Just cleaned my teeth! First time in 2025. First time in months. I am a <a href="https://mstdn.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</span></a> <a href="https://mstdn.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a>. It takes a lot of effort to brush my teeth by myself:<br>to be able to stand upright/be seated, unsupported;<br>having the energy & stamina for the brushing itself;<br>plus being able to co-ordinate my actions.<br>Woo! 😬</p>
Tom Kindlon<p>Line in Denmark has very <a href="https://disabled.social/tags/severeME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>severeME</span></a> & lives in a nursing home but is in danger of being moved to a psychiatric hospital against her will. A Severe ME Advocacy Group petition calls for an improvement of her care in line with international guidelines</p><p><a href="https://www.change.org/p/prevent-forced-psychiatric-hospitalisation-of-very-severe-me-patient-in-denmark" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">change.org/p/prevent-forced-ps</span><span class="invisible">ychiatric-hospitalisation-of-very-severe-me-patient-in-denmark</span></a></p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>Link where people can sign and share this petition for Line in Denmark, who is being threatened with involuntary psychiatric hospitalization if she doesn’t push through her very severe ME. </p><p>Tragically, this could easily lead to a long-term/permanent deterioration</p><p><a href="https://www.change.org/p/prevent-forced-psychiatric-hospitalisation-of-very-severe-me-patient-in-denmark" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">change.org/p/prevent-forced-ps</span><span class="invisible">ychiatric-hospitalisation-of-very-severe-me-patient-in-denmark</span></a> <a href="https://disabled.social/tags/SaveLine" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SaveLine</span></a> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> </p><p><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</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>
ahimsa<p>Powerful video from Anil Van Der Zee:</p><p>"Did you say sorry?"</p><p><a href="https://www.youtube.com/watch?v=jPIYlYddkUk" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=jPIYlYddkU</span><span class="invisible">k</span></a></p><p>Anil has severe ME.</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/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/Trauma" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Trauma</span></a> <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a></p>
Tom Kindlon<p>2/<br>I have just heard that the date has been changed to January 21<br><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</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>Severe ME/CFS: Care, Rights, and Research Webinar Series — Research (Pt. 4 of 4)</p><p><a href="https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-research-pt-4-of-4/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">solvecfs.org/event/severe-me-c</span><span class="invisible">fs-care-rights-and-research-webinar-series-research-pt-4-of-4/</span></a></p><p>Find the time in your time zone:<br><a href="https://www.timeanddate.com/worldclock/fixedtime.html?msg=Severe+ME%2FCFS%3A+Care%2C+Rights%2C+and+Research+-+Part+4+of+4&iso=20250115T11&p1=220&ah=1" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">timeanddate.com/worldclock/fix</span><span class="invisible">edtime.html?msg=Severe+ME%2FCFS%3A+Care%2C+Rights%2C+and+Research+-+Part+4+of+4&iso=20250115T11&p1=220&ah=1</span></a></p><p> <a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>Swedish ME Association RME chairperson Jenny Lundgren has written an opinion piece for Altinget about severe consequences from the lack of care of ME patients.She asks for a national center of knowledge, specialist care, more research,more education & a patient register for ME</p><p>Swedish original:<br><a href="https://www.altinget.se/artikel/sveriges-usla-me-vaard-bidrar-till-att-patienter-begaar-sjalvmord" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">altinget.se/artikel/sveriges-u</span><span class="invisible">sla-me-vaard-bidrar-till-att-patienter-begaar-sjalvmord</span></a></p><p>Google translation:<br><a href="https://www-altinget-se.translate.goog/artikel/sveriges-usla-me-vaard-bidrar-till-att-patienter-begaar-sjalvmord?_x_tr_sl=br&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">www-altinget-se.translate.goog</span><span class="invisible">/artikel/sveriges-usla-me-vaard-bidrar-till-att-patienter-begaar-sjalvmord?_x_tr_sl=br&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp</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/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</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/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <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></p>
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