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Tom Kindlon"Exercise Actually Makes Chronic Fatigue Syndrome Worse"<a href="https://www.youtube.com/watch?v=wxSwYUennBA" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.youtube.com/watch?v=wxSwYUennBA</a>Image is from April 2025 AMMES Newsletter<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

David BridgerMy updated <a href="https://mastodon.social/tags/introduction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#introduction</a> on Mastodon.I'm an author, mainly of science fiction and fantasy. Pagan. Dedicant of the Morrigan. Old salt. Cold War rebel -> present day anarchist. We are the resistance. Friend of crows, rescuer of dogs, adopter of donkeys. Trans ally. The pronouns I prefer are he/him. I live with ME (<a href="https://mastodon.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pwME</a>) and arthritis.If I get an unlikeable vibe off you, I'll block you. No argument. No trading of insults. No warning.My books are my activism: <a href="https://www.beatentrackpublishing.com/?ref=DavidBridger" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.beatentrackpublishing.com/?ref=DavidBridger</a>

Tom KindlonNOTICE: 2025 IACFS/ME Conference Changed to Virtual Format!October 22 - 25, 2025 Online<a href="https://www.iacfsme.org/2023-conference-main-page-copy-2-copy/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.iacfsme.org/2023-conference-main-page-copy-2-copy/</a>[Image is from an email that has just gone out to people on their mailing list]<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

ahimsa<a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MillionsMissing</a> 2025: Sending Out An SOSReminder: Two planning meetings for <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAction</a> Millions Missing 2025 (for ME/CFS Awareness Day - May 12) are scheduled for tomorrow! <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">https://www.meaction.net/2025/04/08/why-were-sending-out-an-sos-this-millionsmissing/</a>Here's how to sign upMeeting 1: Thursday, April 10, 12 pm Pacific, 3 pm Eastern<a href="https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration</a>Meeting 2: Thursday, April 10, 3 pm Pacific / 6 pm Eastern<a href="https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAwareness</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#May12</a>

Tom KindlonWearable Devices Enable <a href="https://disabled.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCOVID</a> Patients to Decrease Symptom Severity:A Case Series From Pilot User Testing<a href="https://journals.lww.com/cptj/fulltext/2025/04000/wearable_devices_enable_long_covid_patients_to.3.aspx" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://journals.lww.com/cptj/fulltext/2025/04000/wearable_devices_enable_long_covid_patients_to.3.aspx</a>“Through this wearables study…I have made adjustments & accommodations in my lifestyle, empowering me to care for myself in a more proactive way”<a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#postcovid19</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LC</a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Covidlonghaulers</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#longhaulers</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

Tom KindlonAn Irish woman with ME (who is a published author) blogs about a few of the brain fog problems she has experienced.<a href="https://solongasicanbreathe.wordpress.com/2025/04/07/crossed-wires/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://solongasicanbreathe.wordpress.com/2025/04/07/crossed-wires/</a><a href="https://disabled.social/tags/brainfog" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#brainfog</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PASC</a> <a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@chronicillness</a> <a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@spoonies</a>

Tom Kindlon2/ 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” <a href="https://bmjopen.bmj.com/content/15/4/e094658" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://bmjopen.bmj.com/content/15/4/e094658</a><a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#mecfs</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a>

ahimsaIf you can't join any of the other events please try to show up on social media on May 12.<a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAction</a> suggestion:"Get creative - create SOS art with messages for our elected officials"Millions Missing toolkit:<a href="https://docs.google.com/document/d/1jeBHwmTcxFkuEflbm0UeHGRAMvNuTKwgCP43G7eGxzQ/edit?tab=t.0" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://docs.google.com/document/d/1jeBHwmTcxFkuEflbm0UeHGRAMvNuTKwgCP43G7eGxzQ/edit?tab=t.0</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAwareness</a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#May12</a> <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MillionsMissing</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a>

Tom Kindlon"Time to diagnosis for ME/CFS"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. 😢And some people sadly die without ever getting a diagnosis.From: <a href="https://bmjopen.bmj.com/content/15/4/e094658" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://bmjopen.bmj.com/content/15/4/e094658</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

ahimsaNews from <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAction</a> - planning for <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MillionsMissing</a> 2025 (May 12)"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"Meeting 1: Thursday, 4/10, 12pm PT/3pm ET <a href="https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration</a>Meeting 2: Thursday, 4/10, 3pm PT/6pm ET <a href="https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration</a>Details: <a href="https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAwareness</a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#May12</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a>

AnnaPLEASE HELP ME ESCAPE!Please <a href="https://aus.social/tags/boost" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#boost</a> and share to other platforms.🙏I don’t have energy left (see below).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.👉Last year: <a href="https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/</a>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">#home</a>. Doctor’s words.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">#narcissist</a> with <a href="https://aus.social/tags/psychopathic" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#psychopathic</a> & <a href="https://aus.social/tags/antisocial" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#antisocial</a> tendencies by a <a href="https://aus.social/tags/psychiatrist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#psychiatrist</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">#illness</a>.👉A year later: <a href="https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/</a>I’ve tried every level of government, every service and they simply won’t help. 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!Is anybody an <a href="https://aus.social/tags/advocate" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#advocate</a>? I desperately need help. I would be incredibly grateful for any help beyond words.🙏Please read articles for full information.Thank you for reading.<a href="https://aus.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://aus.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a> <a href="https://aus.social/tags/Hypothyroidism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Hypothyroidism</a> <a href="https://aus.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicIllness</a> <a href="https://aus.social/tags/Neisvoid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Neisvoid</a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Abuse</a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Housing</a> <a href="https://aus.social/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Dysautonomia</a> <a href="https://aus.social/tags/SocialWork" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SocialWork</a> <a href="https://aus.social/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MedMastodon</a> <a href="https://aus.social/tags/PWLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PWLC</a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MutualAid</a> <a href="https://aus.social/tags/HumanRights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#HumanRights</a> <a href="https://aus.social/tags/Press" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Press</a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Housing</a> <a href="https://aus.social/tags/Journalism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Journalism</a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a> <a href="https://aus.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SevereME</a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Abuse</a> <a href="https://aus.social/tags/Neglect" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Neglect</a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MutualAid</a> <a href="https://aus.social/tags/Narcissist" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Narcissist</a> <a href="https://aus.social/tags/Psychopath" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Psychopath</a>

Tom KindlonAnkush Dehlia is a PhD candidate in Australia whose research is on repurposing drugs for the treatment of <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a><a href="https://www.youtube.com/watch?v=lj6SEmNmeCk" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.youtube.com/watch?v=lj6SEmNmeCk</a>New paper: A Systems-Based Hypothesis for ME/CFS: Phosphatidylcholine Deficiency, Insulin Signaling & Nora <a href="https://www.preprints.org/manuscript/202409.1467/v2" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.preprints.org/manuscript/202409.1467/v2</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

Tom KindlonLife shrinks with ME/CFS. Found on the CFS community on Reddit<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

Tom Kindlon2/“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.”<a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a>

Tom Kindlon🧵 (US) 'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue [ME/CFS] research in limbo<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">https://www.fiercebiotech.com/research/stuck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> 1/

Andrew Gifford ME/CFS photosAnother day of the same - from my ME/CFS photo projectWinter is both never-ending and immovable yet, suddenly, like each year, spring is just around the corner. <a href="https://glass.photo/andrewgifford/EMeuFimjougPAuupHrJyD" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://glass.photo/andrewgifford/EMeuFimjougPAuupHrJyD</a><a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MECFS</a> <a href="https://mastodon.social/tags/pwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#pwME</a> <a href="https://mastodon.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://mastodon.social/tags/photography" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#photography</a>

Tom KindlonEmerge Australia Awards for Excellence in Journalism 2025Links: <a href="https://www.emerge.org.au/the-emerge-australia-awards-for-excellence-in-journalism-2025/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.emerge.org.au/the-emerge-australia-awards-for-excellence-in-journalism-2025/</a><a href="https://www.abc.net.au/news/2024-12-29/pandemic-fertility-long-covid-snuffing-dreams-children-pregnancy/104687860" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.abc.net.au/news/2024-12-29/pandemic-fertility-long-covid-snuffing-dreams-children-pregnancy/104687860</a><a href="https://www.crikey.com.au/2024/12/02/long-covid-symptoms-viruses-health-labour-australia/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.crikey.com.au/2024/12/02/long-covid-symptoms-viruses-health-labour-australia/</a><a href="https://www.abc.net.au/news/2024-06-16/children-with-long-covid-dismissed-doctors-myth-virus-harmless/103959078" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.abc.net.au/news/2024-06-16/children-with-long-covid-dismissed-doctors-myth-virus-harmless/103959078</a><a href="https://thesicktimes.org/2024/06/25/my-partner-and-i-both-have-long-covid-we-tread-the-underworld-together/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://thesicktimes.org/2024/06/25/my-partner-and-i-both-have-long-covid-we-tread-the-underworld-together/</a>From the latest Science for ME weekly update<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/auscovid19" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@auscovid19</a> <a href="https://disabled.social/tags/auscovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#auscovid19</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#postcovid19</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LC</a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Covidlonghaulers</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#longhaulers</a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#COVIDBrain</a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NeuroPASC</a>

Tom Kindlon2 items of news from SwedenEnglish translation: <a href="https://translated.turbopages.org/proxy_u/sv-en.en.3553f916-67e0585e-afffc1ee-74722d776562/https/www.regeringen.se/pressmeddelanden/2025/03/ny-kartlaggning-ska-starka-varden-for-patienter-med-svardiagnostiserade-tillstand" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://translated.turbopages.org/proxy_u/sv-en.en.3553f916-67e0585e-afffc1ee-74722d776562/https/www.regeringen.se/pressmeddelanden/2025/03/ny-kartlaggning-ska-starka-varden-for-patienter-med-svardiagnostiserade-tillstand</a>?<a href="https://www.s4me.info/threads/big-news-from-sweden-fatigue-diagnosis-to-be-disappeared.43190/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.s4me.info/threads/big-news-from-sweden-fatigue-diagnosis-to-be-disappeared.43190/</a>From the latest Science for ME weekly update<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#postcovid19</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#LC</a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Covidlonghaulers</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#longhaulers</a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#COVIDBrain</a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#NeuroPASC</a>

Tom Kindlon2/"The major outcome of our analysis is the lack of significant differences in AAb levels between ME/CFS patients and controls" "we found elevated reactivity against specific EBV and HSV1 surface antigens"<a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a>

Tom KindlonIt's the 7th anniversary of this paper.A lot of it was only possible due to Alem's heroic FOI victory, which the <a href="https://disabled.social/tags/PACETrial" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PACETrial</a> team fought so hard to stop.That surely wasn't because the real results weren't as flattering as they had presented them?<a href="https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-018-0218-3</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

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