Med-Mastodon

Tom Kindlon(US) Call to action: Ask your members of Congress to preserve the Chronic Fatigue Syndrome program at CDC<a href="https://solvecfs.quorum.us/campaign/120562/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://solvecfs.quorum.us/campaign/120562/</a>"Urgent Appeal to Preserve & Strengthen the CDC’s ME/CFS Program"<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 KindlonThe upcoming Invest in ME Research <a href="https://mas.to/@invest_in_me_research" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@invest_in_me_research</a> International ME Conference will allow collaboration and networking between European and international researchers, clinicians, early career researchers, and European ME patient groups and charities.<a href="https://investinme.org/iimer-newslet-2504-european-me-research.shtml" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://investinme.org/iimer-newslet-2504-european-me-research.shtml</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>

Fatigatio e.V.Mehr dazu auch auf: <a href="https://www.fatigatio.de/aktuelles/detail/handbuch-me-cfs-patientenzentrierte-versorgung-interprofessionelle-handlungsempfehlungen" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.fatigatio.de/aktuelles/detail/handbuch-me-cfs-patientenzentrierte-versorgung-interprofessionelle-handlungsempfehlungen</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/Handbuch" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Handbuch</a> <a href="https://mastodon.social/tags/Fachbuch" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fachbuch</a> <a href="https://mastodon.social/tags/VIPH" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#VIPH</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/ME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ME</a> <a href="https://mastodon.social/tags/Fachliteratur" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Fachliteratur</a> <a href="https://mastodon.social/tags/Medizin" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Medizin</a> <a href="https://mastodon.social/tags/Versorgung" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Versorgung</a> <a href="https://mastodon.social/tags/Patienten" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Patienten</a> <a href="https://mastodon.social/tags/Covid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Covid</a> <a href="https://mastodon.social/tags/Corona" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Corona</a> <a href="https://mastodon.social/tags/Amazon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Amazon</a> <a href="https://mastodon.social/tags/Hogrefe" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Hogrefe</a> <a href="https://mastodon.social/tags/eBook" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#eBook</a> <a href="https://mastodon.social/tags/Amazon" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Amazon</a> 3/3

Tom KindlonCrowdfund campaign via Berkeley University to secure <a href="https://trialbyerror.org/author/david/" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@david</a> David Tuller's important work and position for further 6 monthsScreenshot is from the latest Science for ME weekly updateLink: <a href="https://crowdfund.berkeley.edu/project/46120" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://crowdfund.berkeley.edu/project/46120</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> <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 KindlonUK Parliament: Joint ME and Long Covid All Party Parliamentary Group meetingScreenshot is from the latest Science for ME weekly updateLinks: <a href="https://www.actionforme.org.uk/may-joint-me-and-lc-appg/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.actionforme.org.uk/may-joint-me-and-lc-appg/</a> <a href="https://appgme.co.uk/contact-your-mp" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://appgme.co.uk/contact-your-mp</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> <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 KindlonTip: Use the back seat of a car (when stationary) as a place to lie down and rest. Probably not ideal comfort-wise but needs must. I first heard it when someone with ME/CFS used it as a place to lie down at work.<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://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#longcovid</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a>

Tom Kindlon7/“Sharing your record of activityMany people who live with ME/CFS utilise activity-symptom trackers to support them in pacing. It can also be useful to show your doctor these records,to support them to understand how your symptoms are affecting your life (contd)”<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/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a>

Tom KindlonNew: "Defining a High-Quality Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cohort in UK Biobank"Free: <a href="https://openresearch.nihr.ac.uk/articles/5-39/v1" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://openresearch.nihr.ac.uk/articles/5-39/v1</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>

Irish ME/CFS AssociationWe'd love if people would nominate us for one of these £5000 prizes.Just enter 20100254 or myalgic and you will find us. <a href="https://health.movementforgood.com/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://health.movementforgood.com/</a>You can also vote for other charities if you want.<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

Tom KindlonUK - <a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAction</a> SOS: Save our Science<a href="https://www.meaction.net/2025/04/11/sos-save-our-science/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.meaction.net/2025/04/11/sos-save-our-science/</a><a href="https://disabled.social/tags/MEAction" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEAction</a> UK urges people to join their campaign on ME Awareness Day. "Remember to let your MP know what you are doing and why funding research into ME is so important to you and your family."<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://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a>

Tom KindlonDocology: America's Greatest Viral Threat: Ignorance<a href="https://www.youtube.com/watch?v=0B5Fdw7OG4c" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.youtube.com/watch?v=0B5Fdw7OG4c</a>In this episode Dr. Howard Zucker interviews Dr. Ian Lipkin. Includes some discussion of ME/CFS research and the Trump administration funding cuts for Columbia's ME/CFS Center.<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://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a>

Irish ME/CFS AssociationVolunteers sought for blue ribbon collection at Cornelscourt Shopping Centre, South Dublin on Sat May 10 . Please contact us or email tomkindlon [at] irishmecfs dot org if you might be interested.See also next post<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>1/

Tom Kindlon2/“If you have more than one or two topics to discuss, book a double appointment so you & your doctor have more time to cover each question you have. If possible, book your medical appointment at the time of day when you normally feel at your best.”<a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</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>

Tom Kindlon11/ Tips to support your friend living with ME/CFS or long COVID<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/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> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</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 Kindlon🧵 "Preparing information for your doctor"<a href="https://www.emerge.org.au/preparing-information-for-your-doctor-2" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.emerge.org.au/preparing-information-for-your-doctor-2</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/

Tom KindlonDonatedDavid Tuller DrPH <a href="https://trialbyerror.org/author/david/" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@david</a> has shown he has a: -good skill set for this type of work-good knowledge base from following the field closely for many years-an appetite as it can be very drainingProponents of exercise/psychologicalisation/etc are still around<a href="https://crowdfund.berkeley.edu/project/46120" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://crowdfund.berkeley.edu/project/46120</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://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>

Andrew GiffordA retired prof has successfully treated 80% of 150 people with ME/CFS using LDN, plus Meldonium & Sodium Dichloroacetate.<a href="https://jcimcr.org/pdfs/JCIMCR-v6-3508.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://jcimcr.org/pdfs/JCIMCR-v6-3508.pdf</a>Incredibly encouraging!Any views or experience around this you can share? Thanks!<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/FrankComhaire" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#FrankComhaire</a> <a href="https://mastodon.social/tags/Meldonium" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#Meldonium</a> <a href="https://mastodon.social/tags/SodiumDichloroacetate" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#SodiumDichloroacetate</a>

Tom Kindlon2/‬ ‪“When their ‘battery’ gets low, their symptoms get worse & their ability to function & move their bodies declines. If they keep pushing even though their battery has drained, they will ‘crash’. This is the ‘red zone’ known as PEM, when complete rest is the only safe activity”‬<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/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> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@longcovid</a>

Tom Kindlon🧵 It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships<a href="https://www.emerge.org.au/how-to-support-your-friend-who-lives-with-me-cfs-or-long-covid/" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.emerge.org.au/how-to-support-your-friend-who-lives-with-me-cfs-or-long-covid/</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://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>1/

Irish ME/CFS AssociationWe'd love if some people supported us on Blue Sunday, May 18 either individually or by holding an event.Donations can be made at this page <a href="https://www.idonate.ie/event/BlueSunday2025fortheIrishMECFSAssociation" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.idonate.ie/event/BlueSunday2025fortheIrishMECFSAssociation</a> or alternatively people can set up their own donation page for us here: <a href="https://www.idonate.ie/cause/irishmecfsassociation" rel="nofollow noopener noreferrer" translate="no" target="_blank">https://www.idonate.ie/cause/irishmecfsassociation</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@mecfs</a> <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#MEcfs</a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#CFS</a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#PwME</a>

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