Will 🏳️🌈<p>I thought I remember reading that low red blood cell counts could be related to ME/CFS. But when I web search, all I can find is that ME/CFS might be correlated with deformed red blood cells.</p><p>Does anyone know where I can find reference information, if I'm remembering correctly, so I can share with my physicians?</p><p>Thanks!</p><p><a href="https://mindly.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://mindly.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pwME</span></a> <a href="https://mindly.social/tags/AskFedi" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>AskFedi</span></a></p>
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#pwme
19 posts · 10 participants · 1 post today
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://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/MCAS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAS</span></a> <a href="https://aus.social/tags/MCAD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MCAD</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>
Tom Kindlon<p>2/<br>Image is from new paper: “Understanding symptom clusters, diagnosis and healthcare experiences in ME/CFS and long COVID: a cross-sectional survey in the UK”<br><a href="https://bmjopen.bmj.com/content/15/4/e094658" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmjopen.bmj.com/content/15/4/e</span><span class="invisible">094658</span></a></p><p><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/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a><br><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>If you can't join any of the other events please try to show up on social media on May 12.</p><p><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> suggestion:</p><p>"Get creative - create SOS art with messages for our elected officials"</p><p>Millions Missing toolkit:</p><p><a href="https://docs.google.com/document/d/1jeBHwmTcxFkuEflbm0UeHGRAMvNuTKwgCP43G7eGxzQ/edit?tab=t.0" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">docs.google.com/document/d/1je</span><span class="invisible">BHwmTcxFkuEflbm0UeHGRAMvNuTKwgCP43G7eGxzQ/edit?tab=t.0</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/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><br><a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAwareness</span></a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</span></a> <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a></p>
Tom Kindlon<p>"Time to diagnosis for ME/CFS"</p><p>I'm highlighting this mainly to show how long it takes many people to get diagnosed. 5 years in my case with a huge deterioration in 5th year. 😢</p><p>And some people sadly die without ever getting a diagnosis.</p><p>From:<br><a href="https://bmjopen.bmj.com/content/15/4/e094658" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">bmjopen.bmj.com/content/15/4/e</span><span class="invisible">094658</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>
ahimsa<p>News from <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> - planning for <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MillionsMissing</span></a> 2025 (May 12)</p><p>"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"</p><p>Meeting 1: Thursday, 4/10, 12pm PT/3pm ET<br><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, 4/10, 3pm PT/6pm ET<br><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>Details:<br><a href="https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">meaction.net/2025/04/02/millio</span><span class="invisible">nsmissing-2025-sending-out-an-sos/</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/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/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAwareness</span></a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>May12</span></a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a></p>
Tom Kindlon<p>This has one paragraph on ME/CFS (see image)</p><p>"Princeton and Harvard join other Ivy League schools facing funding cuts, putting research at risk"</p><p><a href="https://www.fiercebiotech.com/research/princeton-and-harvard-join-other-ivy-league-universities-facing-federal-funding-cuts" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">fiercebiotech.com/research/pri</span><span class="invisible">nceton-and-harvard-join-other-ivy-league-universities-facing-federal-funding-cuts</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>Sympathetic article where 2 Australian researchers Chris Armstrong & Katherine Huang, funded by the Open Medicine Foundation <span class="h-card" translate="no"><a href="https://bird.makeup/users/openmedf" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>openmedf</span></a></span> discuss their recent paper that used data from the UK biobank</p><p><a href="https://pursuit.unimelb.edu.au/articles/We-dont-yet-know-what-causes-chronic-fatigue-syndrome,-but-were-improving-diagnosis" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">pursuit.unimelb.edu.au/article</span><span class="invisible">s/We-dont-yet-know-what-causes-chronic-fatigue-syndrome,-but-were-improving-diagnosis</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>
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>"Six photographs about the drudge of ME/CFS: Some recent photos from my ongoing project about Myalgic Encephalomyelitis - aka ME/CFS, ME or Chronic Fatigue Syndrome - like Long Covid" by <span class="h-card" translate="no"><a href="https://mastodon.social/@AndrewGiffordphotography" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>AndrewGiffordphotography</span></a></span> <br><a href="https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">andrewgiffordphotography.subst</span><span class="invisible">ack.com/p/six-photographs-about-the-drudge</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>
Andrew Gifford ME/CFS photos<p>Six photographs about the drudge of ME/CFS:</p><p><a href="https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">andrewgiffordphotography.subst</span><span class="invisible">ack.com/p/six-photographs-about-the-drudge</span></a></p><p>Sorry it's been a while since my last batch, I didn't have much capacity over the winter. Please do share!</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/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://mastodon.social/tags/MEandLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEandLC</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/Photography" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Photography</span></a> <a href="https://mastodon.social/tags/DocumentaryPhotography" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DocumentaryPhotography</span></a> <a href="https://mastodon.social/tags/ConcernedPhotography" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ConcernedPhotography</span></a></p>
Tom Kindlon<p>Life shrinks with ME/CFS.<br>Found on the CFS community on Reddit</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>Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open</p><p><a href="https://events.mecfs-research.org/en/events/conference_2025" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">events.mecfs-research.org/en/e</span><span class="invisible">vents/conference_2025</span></a></p><p>Image is from the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a></p>
Tom Kindlon<p>The Science for ME forum has published its first factsheet which gives an introduction to ME/CFS. It was created following extensive discussion among forum members.</p><p><a href="https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">s4me.info/docs/WhatIsMECFS-S4M</span><span class="invisible">E-Factsheet.pdf</span></a></p><p>Factsheets on other topics related to ME/CFS are in the pipeline.</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> <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>
Science for ME<p>One highlight from this week's news - the Science for ME forum has published its first factsheet, Introduction to ME/CFS:</p><p><a href="https://www.s4me.info/threads/science-for-me-fact-sheets.43310/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">s4me.info/threads/science-for-</span><span class="invisible">me-fact-sheets.43310/</span></a></p><p>PDF version:</p><p><a href="https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">s4me.info/docs/WhatIsMECFS-S4M</span><span class="invisible">E-Factsheet.pdf</span></a></p><p><a href="https://med-mastodon.com/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://med-mastodon.com/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://med-mastodon.com/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</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>
Tom Kindlon<p>2/</p><p>“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center, told Fierce Biotech in a March 19 interview. “These cuts have brought our work to a dead halt.”</p><p><a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>🧵<br>(US)<br>'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue [ME/CFS] research in limbo</p><p><a href="https://www.fiercebiotech.com/research/stuck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">fiercebiotech.com/research/stu</span><span class="invisible">ck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> </p><p>1/</p>
Tom Kindlon<p>I thought I would repost this to highlight again some of the many varied symptoms that can be found in <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a>/#ChronicFatigueSyndrome</p><p>Particularly relevant when similarities with the <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> presentation in some people are being missed</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> </p><p>1/</p>
Kevy B<p>Incidently, if you want to cure ALL cases of Long Covid, you also need to cure ME. You can't get away from that fact as much as you'd like to. 5/5 <a class="hashtag" href="https://bsky.app/search?q=%23mecfs" rel="nofollow noopener noreferrer" target="_blank">#mecfs</a> <a class="hashtag" href="https://bsky.app/search?q=%23pwME" rel="nofollow noopener noreferrer" target="_blank">#pwME</a> <a class="hashtag" href="https://bsky.app/search?q=%23LongCovid" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a></p>
Kevy B<p>happening in many ME cases that have been caused by other viruses, or quite simply an EBV infection on it's own, if something else has caused this fault in the immune system. (just about everyone is invected with EBV, not many are sick with it) 4/5 <a class="hashtag" href="https://bsky.app/search?q=%23mecfs" rel="nofollow noopener noreferrer" target="_blank">#mecfs</a> <a class="hashtag" href="https://bsky.app/search?q=%23pwME" rel="nofollow noopener noreferrer" target="_blank">#pwME</a> <a class="hashtag" href="https://bsky.app/search?q=%23LongCovid" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a></p>
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