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Will 🏳️‍🌈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.Does anyone know where I can find reference information, if I'm remembering correctly, so I can share with my physicians?Thanks!<a href="https://mindly.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://mindly.social/tags/pwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#pwME</a> <a href="https://mindly.social/tags/AskFedi" class="mention hashtag" rel="nofollow noopener" target="_blank">#AskFedi</a>

Tom Kindlon2 of 2 <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> UK paediatric leaflet.Among other things, this was shared at a stand at the recent Royal College of Paediatrics and Child Health Conference in Glasgow (shared with permission)<a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Tom Kindlon<a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> UK paediatric leaflet.Among other things, this was shared at a stand at the recent Royal College of Paediatrics and Child Health Conference in Glasgow (shared with permission)<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> 1 of 2

Tom KindlonNew from Switzerland:Effect on Quality of Life of Therapeutic Plasmapheresis in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients with Elevated Ꞵ-Adrenergic and M3-Muscarinic Receptor Antibodies – a Pilot Study<a href="https://www.preprints.org/manuscript/202504.0228/v1" rel="nofollow noopener" translate="no" target="_blank">https://www.preprints.org/manuscript/202504.0228/v1</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

AnnaIn case it was missed in the post above, this is my updated article:👉 <a href="https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/" rel="nofollow noopener" translate="no" target="_blank">https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/</a>My doctor predicts I will die if I don’t leave soon. 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.Help please 🙏 <a href="https://aus.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://aus.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://aus.social/tags/Hypothyroidism" class="mention hashtag" rel="nofollow noopener" target="_blank">#Hypothyroidism</a> <a href="https://aus.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://aus.social/tags/Neisvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#Neisvoid</a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener" target="_blank">#Abuse</a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener" target="_blank">#Housing</a> <a href="https://aus.social/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#Dysautonomia</a> <a href="https://aus.social/tags/SocialWork" class="mention hashtag" rel="nofollow noopener" target="_blank">#SocialWork</a> <a href="https://aus.social/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#MedMastodon</a> <a href="https://aus.social/tags/PWLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PWLC</a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener" target="_blank">#MutualAid</a> <a href="https://aus.social/tags/HumanRights" class="mention hashtag" rel="nofollow noopener" target="_blank">#HumanRights</a> <a href="https://aus.social/tags/Press" class="mention hashtag" rel="nofollow noopener" target="_blank">#Press</a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener" target="_blank">#Housing</a> <a href="https://aus.social/tags/Journalism" class="mention hashtag" rel="nofollow noopener" target="_blank">#Journalism</a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://aus.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereME</a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener" target="_blank">#Abuse</a> <a href="https://aus.social/tags/Neglect" class="mention hashtag" rel="nofollow noopener" target="_blank">#Neglect</a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener" target="_blank">#MutualAid</a> <a href="https://aus.social/tags/Narcissist" class="mention hashtag" rel="nofollow noopener" target="_blank">#Narcissist</a> <a href="https://aus.social/tags/Psychopath" class="mention hashtag" rel="nofollow noopener" target="_blank">#Psychopath</a> <a href="https://aus.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://aus.social/tags/MCAD" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAD</a> <a href="https://aus.social/tags/Endometriosis" class="mention hashtag" rel="nofollow noopener" target="_blank">#Endometriosis</a> <a href="https://aus.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicPain</a> <a href="https://aus.social/tags/CostOfLivingCrisis" class="mention hashtag" rel="nofollow noopener" target="_blank">#CostOfLivingCrisis</a> <a href="https://aus.social/tags/Melbourne" class="mention hashtag" rel="nofollow noopener" target="_blank">#Melbourne</a> <a href="https://aus.social/tags/Australia" class="mention hashtag" rel="nofollow noopener" target="_blank">#Australia</a> <a href="https://aus.social/tags/DomesticAbuse" class="mention hashtag" rel="nofollow noopener" target="_blank">#DomesticAbuse</a> <a href="https://aus.social/tags/DV" class="mention hashtag" rel="nofollow noopener" target="_blank">#DV</a><a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener" target="_blank">@chronicillness</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://a.gup.pe/u/neisvoid" class="u-url mention" rel="nofollow noopener" target="_blank">@neisvoid</a> <a href="https://a.gup.pe/u/disabilityjustice" class="u-url mention" rel="nofollow noopener" target="_blank">@disabilityjustice</a> <a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener" target="_blank">@disability</a> <a href="https://a.gup.pe/u/socialwork" class="u-url mention" rel="nofollow noopener" target="_blank">@socialwork</a> <a href="https://a.gup.pe/u/dysautonomia" class="u-url mention" rel="nofollow noopener" target="_blank">@dysautonomia</a> <a href="https://a.gup.pe/u/mutualaid" class="u-url mention" rel="nofollow noopener" target="_blank">@mutualaid</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/chronicpain" class="u-url mention" rel="nofollow noopener" target="_blank">@chronicpain</a> <a href="https://a.gup.pe/u/mcas" class="u-url mention" rel="nofollow noopener" target="_blank">@mcas</a> <a href="https://a.gup.pe/u/australia" class="u-url mention" rel="nofollow noopener" target="_blank">@australia</a> <a href="https://a.gup.pe/u/melbourne" class="u-url mention" rel="nofollow noopener" target="_blank">@melbourne</a>

Tom KindlonWell done to Drs Crawford & Tuller <a href="https://trialbyerror.org/author/david/" class="u-url mention" rel="nofollow noopener" target="_blank">@david</a> both known in the ME community, for their letter in the Lancet which can be read for free here: <a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(25)00329-0/fulltext?rss=yes" rel="nofollow noopener" translate="no" target="_blank">https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(25)00329-0/fulltext?rss=yes</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

Irish ME/CFS Association3/ Final letters went out to GPs today. In the end, 3612 went out.Continue to receive the odd returned envelope (gone away, retired, etc.) so happy to send out the bundle to people in Ireland (members are getting info in upcoming newsletter).<a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://mastodon.ie/tags/pwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#pwME</a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Tom Kindlon3/People in the UK can review specialist services here <a href="https://meassociation.org.uk/nhs-specialist-services-me-cfs-lc/" rel="nofollow noopener" translate="no" target="_blank">https://meassociation.org.uk/nhs-specialist-services-me-cfs-lc/</a><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</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" 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" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Tom KindlonVirax Biolabs, UK:Evaluation of T cell dysfunction in Post Acute Infection Syndromes [ME/CFS, long COVID, post treatment Lyme]<a href="https://viraxbiolabs.com/wp-content/uploads/2025/03/WIRMposter_printing.pdf" rel="nofollow noopener" translate="no" target="_blank">https://viraxbiolabs.com/wp-content/uploads/2025/03/WIRMposter_printing.pdf</a>Results of only 10 participants reported here but 150 are being studied <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PASC</a> <a href="https://disabled.social/tags/Lyme" class="mention hashtag" rel="nofollow noopener" target="_blank">#Lyme</a> <a href="https://disabled.social/tags/LymeDisease" class="mention hashtag" rel="nofollow noopener" target="_blank">#LymeDisease</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" 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" 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" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAwareness</a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener" target="_blank">#May12</a> <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener" target="_blank">#MillionsMissing</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" 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" 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" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

ahimsaNews from <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAction</a> - planning for <a href="https://disabled.social/tags/MillionsMissing" class="mention hashtag" rel="nofollow noopener" 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" 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" 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" 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" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/MEAwareness" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEAwareness</a> <a href="https://disabled.social/tags/May12" class="mention hashtag" rel="nofollow noopener" target="_blank">#May12</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a>

Tom KindlonA huge amount of dissatisfaction and not much satisfaction regarding "NHS experience and specialist visits" from people with ME/CFS and to a slightly lesser extent people with long Covid in the UKFrom: <a href="https://bmjopen.bmj.com/content/15/4/e094658" rel="nofollow noopener" 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" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid19</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener" target="_blank">#LC</a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#Covidlonghaulers</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#longhaulers</a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener" target="_blank">#COVIDBrain</a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#NeuroPASC</a>

Tom KindlonThis has one paragraph on ME/CFS (see image)"Princeton and Harvard join other Ivy League schools facing funding cuts, putting research at risk"<a href="https://www.fiercebiotech.com/research/princeton-and-harvard-join-other-ivy-league-universities-facing-federal-funding-cuts" rel="nofollow noopener" translate="no" target="_blank">https://www.fiercebiotech.com/research/princeton-and-harvard-join-other-ivy-league-universities-facing-federal-funding-cuts</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

Tom KindlonPress release for UK study: "Earlier diagnosis and better care needed for ME & Long COVID patients, report finds"<a href="https://news.exeter.ac.uk/faculty-of-health-and-life-sciences/earlier-diagnosis-and-better-care-needed-for-me-and-long-covid-patients-report-finds/" rel="nofollow noopener" translate="no" target="_blank">https://news.exeter.ac.uk/faculty-of-health-and-life-sciences/earlier-diagnosis-and-better-care-needed-for-me-and-long-covid-patients-report-finds/</a>"respondents reported significant delays in the diagnosis of ME & Long COVID, low satisfaction in specialist services"<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid19</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener" target="_blank">#LC</a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#Covidlonghaulers</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#longhaulers</a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener" target="_blank">#COVIDBrain</a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#NeuroPASC</a>1/

Tom KindlonSympathetic article where 2 Australian researchers Chris Armstrong & Katherine Huang, funded by the Open Medicine Foundation <a href="https://bird.makeup/users/openmedf" class="u-url mention" rel="nofollow noopener" target="_blank">@openmedf</a> discuss their recent paper that used data from the UK biobank<a href="https://pursuit.unimelb.edu.au/articles/We-dont-yet-know-what-causes-chronic-fatigue-syndrome,-but-were-improving-diagnosis" rel="nofollow noopener" translate="no" target="_blank">https://pursuit.unimelb.edu.au/articles/We-dont-yet-know-what-causes-chronic-fatigue-syndrome,-but-were-improving-diagnosis</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

AnnaPLEASE HELP ME ESCAPE!Please <a href="https://aus.social/tags/boost" class="mention hashtag" rel="nofollow noopener" 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" 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" 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" target="_blank">#narcissist</a> with <a href="https://aus.social/tags/psychopathic" class="mention hashtag" rel="nofollow noopener" target="_blank">#psychopathic</a> & <a href="https://aus.social/tags/antisocial" class="mention hashtag" rel="nofollow noopener" target="_blank">#antisocial</a> tendencies by a <a href="https://aus.social/tags/psychiatrist" class="mention hashtag" rel="nofollow noopener" 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" 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" 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" 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" target="_blank">#PwME</a> <a href="https://aus.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://aus.social/tags/Hypothyroidism" class="mention hashtag" rel="nofollow noopener" target="_blank">#Hypothyroidism</a> <a href="https://aus.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://aus.social/tags/Neisvoid" class="mention hashtag" rel="nofollow noopener" target="_blank">#Neisvoid</a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener" target="_blank">#Abuse</a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener" target="_blank">#Housing</a> <a href="https://aus.social/tags/Dysautonomia" class="mention hashtag" rel="nofollow noopener" target="_blank">#Dysautonomia</a> <a href="https://aus.social/tags/SocialWork" class="mention hashtag" rel="nofollow noopener" target="_blank">#SocialWork</a> <a href="https://aus.social/tags/MedMastodon" class="mention hashtag" rel="nofollow noopener" target="_blank">#MedMastodon</a> <a href="https://aus.social/tags/PWLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PWLC</a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener" target="_blank">#MutualAid</a> <a href="https://aus.social/tags/HumanRights" class="mention hashtag" rel="nofollow noopener" target="_blank">#HumanRights</a> <a href="https://aus.social/tags/Press" class="mention hashtag" rel="nofollow noopener" target="_blank">#Press</a> <a href="https://aus.social/tags/Housing" class="mention hashtag" rel="nofollow noopener" target="_blank">#Housing</a> <a href="https://aus.social/tags/Journalism" class="mention hashtag" rel="nofollow noopener" target="_blank">#Journalism</a> <a href="https://aus.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://aus.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener" target="_blank">#SevereME</a> <a href="https://aus.social/tags/Abuse" class="mention hashtag" rel="nofollow noopener" target="_blank">#Abuse</a> <a href="https://aus.social/tags/Neglect" class="mention hashtag" rel="nofollow noopener" target="_blank">#Neglect</a> <a href="https://aus.social/tags/MutualAid" class="mention hashtag" rel="nofollow noopener" target="_blank">#MutualAid</a> <a href="https://aus.social/tags/Narcissist" class="mention hashtag" rel="nofollow noopener" target="_blank">#Narcissist</a> <a href="https://aus.social/tags/Psychopath" class="mention hashtag" rel="nofollow noopener" target="_blank">#Psychopath</a>

Tom Kindlon"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 <a href="https://mastodon.social/@AndrewGiffordphotography" class="u-url mention" rel="nofollow noopener" target="_blank">@AndrewGiffordphotography</a> <a href="https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge" rel="nofollow noopener" translate="no" target="_blank">https://andrewgiffordphotography.substack.com/p/six-photographs-about-the-drudge</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

Tom Kindlon2/“Lipkin is personally donating money to help keep a small portion of the research afloat, but this barely covers a single employee and some supplies, he said.”👏 Great to see this level of commitment from an ME/CFS researcher but a tragedy it should be needed.<a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a>

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