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#ChronicFatigueSyndrome

26 posts9 participants2 posts today
Tom Kindlon<p><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEAction</span></a> UK paediatric leaflet.</p><p>Among other things, this was shared at a stand at the recent Royal College of Paediatrics and Child Health Conference in Glasgow<br>(shared with permission)</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 of 2</p>
Tom Kindlon<p>New from Switzerland:</p><p>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</p><p><a href="https://www.preprints.org/manuscript/202504.0228/v1" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">preprints.org/manuscript/20250</span><span class="invisible">4.0228/v1</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>Well done to Drs Crawford &amp; Tuller <span class="h-card" translate="no"><a href="https://trialbyerror.org/author/david/" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>david</span></a></span> both known in the ME community, for their letter in the Lancet which can be read for free here:<br><a href="https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(25)00329-0/fulltext?rss=yes" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">thelancet.com/journals/lancet/</span><span class="invisible">article/PIIS0140-6736(25)00329-0/fulltext?rss=yes</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>Virax Biolabs, UK:</p><p>Evaluation of T cell dysfunction in Post Acute Infection Syndromes [ME/CFS, long COVID, post treatment Lyme]</p><p><a href="https://viraxbiolabs.com/wp-content/uploads/2025/03/WIRMposter_printing.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">viraxbiolabs.com/wp-content/up</span><span class="invisible">loads/2025/03/WIRMposter_printing.pdf</span></a></p><p>Results of only 10 participants reported here but 150 are being studied </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/Lyme" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Lyme</span></a> <a href="https://disabled.social/tags/LymeDisease" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LymeDisease</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>
Tom Kindlon<p>A 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 UK</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> <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>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>Press release for UK study:<br>"Earlier diagnosis and better care needed for ME &amp; Long COVID patients, report finds"</p><p><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 noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">news.exeter.ac.uk/faculty-of-h</span><span class="invisible">ealth-and-life-sciences/earlier-diagnosis-and-better-care-needed-for-me-and-long-covid-patients-report-finds/</span></a></p><p>"respondents reported significant delays in the diagnosis of ME &amp; Long COVID, low satisfaction in specialist services"</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><p>1/</p>
Tom Kindlon<p>Sympathetic article where 2 Australian researchers Chris Armstrong &amp; 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>
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>
Tom Kindlon<p>Congratulations to the heroic Mark Vink for managing to publish another paper while bedbound with severe ME 👏🏆</p><p>"The PACE Trial’s GET Manual for Therapists Exposes the Fixed Incremental Nature of Graded Exercise Therapy for ME/CFS"</p><p><a href="https://www.mdpi.com/2075-1729/15/4/584" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="">mdpi.com/2075-1729/15/4/584</span><span class="invisible"></span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>🧵<br>Good to see this article with some interesting people from the field quoted (e.g. Lipkin, Pollack, Sieverts, Seltzer):</p><p>"Trump admin's attacks on chronic disease research abandons long COVID and ME/CFS patients... Again"<br><a href="https://www.salon.com/2025/04/01/admins-on-chronic-disease-research-abandons-long-and-mecfs-patients-again/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">salon.com/2025/04/01/admins-on</span><span class="invisible">-chronic-disease-research-abandons-long-and-mecfs-patients-again/</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> Hashtags:<br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a></p><p>1/</p>
Tom Kindlon<p>Ankush 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">#<span>MECFS</span></a></p><p><a href="https://www.youtube.com/watch?v=lj6SEmNmeCk" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">youtube.com/watch?v=lj6SEmNmeC</span><span class="invisible">k</span></a></p><p>New paper:<br>A Systems-Based Hypothesis for ME/CFS: Phosphatidylcholine Deficiency, Insulin Signaling &amp; Nora<br><a href="https://www.preprints.org/manuscript/202409.1467/v2" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">preprints.org/manuscript/20240</span><span class="invisible">9.1467/v2</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
vulgalour<p>If you'd like to know more about ME/Chronic Fatigue Syndrome, this is a video for you. I've been living with this condition undiagnosed for a couple of decades, not knowing what was wrong with me, until very recently.</p><p>I'm still figuring out what happens next. Everything has changed and everything remains the same.</p><p><a href="https://youtu.be/USngykwyT2o?feature=shared" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">youtu.be/USngykwyT2o?feature=s</span><span class="invisible">hared</span></a></p><p><a href="https://birdbutt.com/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://birdbutt.com/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://birdbutt.com/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a> <a href="https://birdbutt.com/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a></p>
Tom Kindlon<p>From Turkey:</p><p>Awareness and Perception of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Among Pain Specialists: A Questionnaire-Based Study</p><p><a href="https://www.cureus.com/articles/347520-awareness-and-perception-of-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-among-pain-specialists-a-questionnaire-based-study" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">cureus.com/articles/347520-awa</span><span class="invisible">reness-and-perception-of-myalgic-encephalomyelitis-and-chronic-fatigue-syndrome-among-pain-specialists-a-questionnaire-based-study</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></p>
Tom Kindlon<p>From Norway:</p><p>Improving myalgic encephalomyelitis population sampling: Applying an online respondent-driven method to address biases in G93.3 register data</p><p>Image is from the latest Science for ME weekly update</p><p><a href="https://journals.sagepub.com/doi/10.1177/13591053251325690" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">journals.sagepub.com/doi/10.11</span><span class="invisible">77/13591053251325690</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>From a scientist in Australia:</p><p>A research perspective on sphingolipid metabolism and myalgic encephalomyelitis/chronic fatigue syndrome</p><p><a href="https://journals.lww.com/nrronline/citation/9900/a_research_perspective_on_sphingolipid_metabolism.770.aspx" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">journals.lww.com/nrronline/cit</span><span class="invisible">ation/9900/a_research_perspective_on_sphingolipid_metabolism.770.aspx</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></p>
Tom Kindlon<p>44-minute Learn about ME podcast: Episode 12 – Learn about Severe ME</p><p>Audio and transcript:<br><a href="https://www.buzzsprout.com/1717775/episodes/16875047-episode-12-learn-about-severe-me" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">buzzsprout.com/1717775/episode</span><span class="invisible">s/16875047-episode-12-learn-about-severe-me</span></a></p><p>I haven't listened myself so far but I'm hopeful it's good.</p><p><a href="https://disabled.social/tags/SevereME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>SevereME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a></p>
Tom Kindlon<p>3/<br>Part 1 of 2<br>It may be easier to read it this way</p><p><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> <br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
Clanman<p>Just a little book of my Word Doodles (some call it poetry), out on Amazon now ! <a href="https://mastodonapp.uk/tags/poetry" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>poetry</span></a> <a href="https://mastodonapp.uk/tags/humour" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>humour</span></a> <a href="https://mastodonapp.uk/tags/military" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>military</span></a> <a href="https://mastodonapp.uk/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://mastodonapp.uk/tags/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ME</span></a></p>
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