Tom Kindlon<p>ScienceNorway: Almost no ME/CFS patients return to work</p><p><a href="https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">sciencenorway.no/chronic-fatig</span><span class="invisible">ue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762</span></a></p><p>Image is from the latest Science for ME weekly update</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
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#mecfs
31 posts · 18 participants · 6 posts today
Tom Kindlon<p>Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open</p><p><a href="https://events.mecfs-research.org/en/events/conference_2025" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">events.mecfs-research.org/en/e</span><span class="invisible">vents/conference_2025</span></a></p><p>Image is from the latest Science for ME weekly update</p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span><br><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovid</span></a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PASC</span></a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwLC</span></a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid</span></a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>postcovid19</span></a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LC</span></a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Covidlonghaulers</span></a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostCovidSyndrome</span></a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longhaulers</span></a> <a href="https://disabled.social/tags/COVIDBrain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVIDBrain</span></a> <a href="https://disabled.social/tags/NeuroPASC" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>NeuroPASC</span></a></p>
Tom Kindlon<p>Advocating the role of trained immunity in the pathogenesis of ME/CFS: a mini review <br><a href="https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2025.1483764/abstract" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">frontiersin.org/journals/immun</span><span class="invisible">ology/articles/10.3389/fimmu.2025.1483764/abstract</span></a></p><p>Hypothesis/review. "After an acute infection, long term changes are induced by epigenetic and metabolic changes in the hematopoietic stem cell system. The descendants from these stem cells are innate myeloid cells equipped with a more proinflammatory phenotype."</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>The Science for ME forum has published its first factsheet which gives an introduction to ME/CFS. It was created following extensive discussion among forum members.</p><p><a href="https://s4me.info/docs/WhatIsMECFS-S4ME-Factsheet.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">s4me.info/docs/WhatIsMECFS-S4M</span><span class="invisible">E-Factsheet.pdf</span></a></p><p>Factsheets on other topics related to ME/CFS are in the pipeline.</p><p><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>(Repeat from a few months ago)</p><p>Most Troubling Symptoms in ME/CFS & Long COVID Patients. Bar graph shows the frequency of symptoms reported by patients with <a href="https://disabled.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a><br>(blue) & <a href="https://disabled.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> (red)</p><p>From:<br>"Patient-Reported Treatment Outcomes in ME/CFS & Long COVID"<br><a href="https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1.full.pdf" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">medrxiv.org/content/10.1101/20</span><span class="invisible">24.11.27.24317656v1.full.pdf</span></a></p><p><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span> <a href="https://disabled.social/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>longcovid</span></a></span></p>
Tom Kindlon<p>2/</p><p>“The field of ME/CFS is ripe for clinical trials,” Lipkin, who directs the center, told Fierce Biotech in a March 19 interview. “These cuts have brought our work to a dead halt.”</p><p><a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a><br><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Tom Kindlon<p>🧵<br>(US)<br>'It's just ugly': Federal funding cuts to Columbia University leave chronic fatigue [ME/CFS] research in limbo</p><p><a href="https://www.fiercebiotech.com/research/stuck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">fiercebiotech.com/research/stu</span><span class="invisible">ck-precipice-funding-cuts-leave-chronic-fatigue-field-dangling-edge-clinical</span></a></p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span><br><a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MyalgicEncephalomyelitis</span></a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ChronicFatigueSyndrome</span></a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MEcfs</span></a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PwME</span></a> </p><p>1/</p>
Broadwaybabyto<p>“We’ve been conditioned by society that pain is weakness. That being sick is something you can overcome by simply trying harder.”</p><p>You can’t “try harder” your way out of disability. It’s not a weakness or a moral failing.</p><p>It is one of the only minority groups you can join at any time. </p><p>Ableism forces us to hide our suffering. To smile through the pain and deliver a convincing “I’m fine”</p><p>My latest looks at what would happen if we stopped hiding, as well as ways you can support the disabled person in your life. </p><p><a href="https://www.disabledginger.com/p/why-are-chronically-ill-people-forced" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">disabledginger.com/p/why-are-c</span><span class="invisible">hronically-ill-people-forced</span></a></p><p><a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/pain" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>pain</span></a> <a href="https://zeroes.ca/tags/fatigue" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fatigue</span></a> <a href="https://zeroes.ca/tags/disabiltiyrights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabiltiyrights</span></a> <a href="https://zeroes.ca/tags/disabilityjustice" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityjustice</span></a> <a href="https://zeroes.ca/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a> <a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
Broadwaybabyto<p>Tomorrow is a gift that the chronically ill never get to receive. When you’re temporarily sick, you know that it’s going to improve. You can rest because you have the knowledge that the next day will be a little bit better. Each day there will be progress until you’re completely ‘fine’ again.</p><p><a href="https://www.disabledginger.com/p/why-are-chronically-ill-people-forced" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">disabledginger.com/p/why-are-c</span><span class="invisible">hronically-ill-people-forced</span></a></p><p><a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/eugenics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eugenics</span></a> <a href="https://zeroes.ca/tags/disabilityrights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityrights</span></a> <a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a></p>
Robot Diver<p>Powered through a bath with lavender bubbles. Kept the cat locked out because he tried to jump in last time and lavender is no bueno for cats. Managed to stay in the bath for a normal human time, which is pretty unusual for me. Normally my partner will say, I thought you were having a bath? I assure her I did, but i was only gone for maybe ten minutes tops. Stayed much longer today and I'm feeling unusually relaxed. Lavender is one of a handful of scents I can tolerate as long as it's not synthetic. </p><p>Napping pretty hard for recovery, but I think that was pretty worthwhile. </p><p><span class="h-card" translate="no"><a href="https://a.gup.pe/u/actuallyautistic" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>actuallyautistic</span></a></span> <a href="https://starlite.rodeo/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://starlite.rodeo/tags/auDHD" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>auDHD</span></a> <a href="https://starlite.rodeo/tags/selfCare" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>selfCare</span></a> <a href="https://starlite.rodeo/tags/hygiene" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>hygiene</span></a></p>
Broadwaybabyto<p>When I started The Disabled Ginger I sent it to my friends and family … as most of us do. </p><p>I was proud that I was finally standing up for disability rights. That I was taking my pain and putting it on the page in an effort to help others. That I had found something that lit a spark inside me. </p><p>Unfortunately, many of my friends didn’t feel the same way. </p><p>My disabilities are invisible, and I had become very good at hiding them. Apparently that’s what people expected of me, as they didn’t like this “new” version of Kelly. </p><p>Almost none of my friends subscribed. What’s worse, many stopped talking to me. Or would only reply in brief texts. </p><p>It’s almost been a year since I launched, and my circle is noticeably smaller. Many people I thought I was close with haven’t reached out for nearly 6 months. </p><p>When you find your purpose and your passion, it’s an incredible feeling. Hopefully people support you. </p><p>Not everyone will. And that’s ok. </p><p>It’s painful seeing so many relationships fade away. It hurts knowing they don’t see the value in me now that I’m “officially” disabled. </p><p>As painful as it is, it’s also a perfect example of why I became an advocate. Ableism is a huge problem. Being disabled can be incredibly lonely. I wanted to give a voice to those who haven’t yet found theirs. </p><p>In the process I’ve met incredible people from all over the world who inspire me to keep going. Who give me a reason to write every day. Who remind me of the compassion, love and goodness that’s still out there. </p><p>Thank you to each and every one of you. I couldn’t do this alone. </p><p>My latest looks at the reasons we hide, and what would happen if we all decided to stop hiding and show the world the realities of chronic illness: </p><p><a href="https://www.disabledginger.com/p/why-are-chronically-ill-people-forced" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">disabledginger.com/p/why-are-c</span><span class="invisible">hronically-ill-people-forced</span></a></p><p><a href="https://zeroes.ca/tags/chronicillness" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>chronicillness</span></a> <a href="https://zeroes.ca/tags/longcovid" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>longcovid</span></a> <a href="https://zeroes.ca/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://zeroes.ca/tags/ableism" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>ableism</span></a> <a href="https://zeroes.ca/tags/disability" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disability</span></a> <a href="https://zeroes.ca/tags/disabilityrights" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>disabilityrights</span></a> <a href="https://zeroes.ca/tags/eugenics" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>eugenics</span></a></p>
Mx. Luna Corbden<p>I write this stuff because sometimes I feel better when I put the thoughts into words. And because maybe someone will relate to it and gain insights into their own situation. But mostly because sometimes it makes me feel better.</p><p>And I do. Much more focused now. </p><p><a href="https://defcon.social/tags/DarkSojourn" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DarkSojourn</span></a><br><a href="https://defcon.social/tags/Recovery2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Recovery2025</span></a><br><a href="https://defcon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
Mx. Luna Corbden<p>idk, I guess I could try...</p><p>SLEEPING.</p><p>or... naw.</p><p><a href="https://defcon.social/tags/DarkSojourn" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DarkSojourn</span></a><br><a href="https://defcon.social/tags/Recovery2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Recovery2025</span></a><br><a href="https://defcon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
Mx. Luna Corbden<p>There's a sort of adrenal balance and that's all out of whack for me now. This is a better problem to have than the problems before I moved. Like when I'm resting, it's hard to find media that can hold my interest. Horror and cult docus are *too* exciting, and nothing else is exciting enough. I still trend towards the darker stuff (I'm watching someone do a Disco Elysium lets play right now), which keeps me in a darker headspace, but the happy unicorn pony shit just feels... empty. I haven't been able to watch a straight-up comedy that isn't gallows humor in many years, because it's supposed to be funny but I don't feel like laughing. I don't really have a video "genre" right now, games besides idle games are still out of reach and idle games have gotten boring. I start a lot of stuff and then stop it, which it's great that I can finally be spontaneous now and try things at random, but my morale takes a hit after I've skipped a couple of videos or shows. I'm doing much better at reading when I do have energy, but when I'm so tired like that, I know I won't get more than a page or two.</p><p>So rest is unfulfilling, too.</p><p>There's probably some element here we might call "depression." I don't really feel hopeless, just tired, which makes me unable to hold interest in a whole lot.</p><p>I blamed it on cognitive drain from the taxes push last week and figured it would pass by now. It will surely pass as all things do, but it's getting old.</p><p><a href="https://defcon.social/tags/DarkSojourn" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DarkSojourn</span></a><br><a href="https://defcon.social/tags/Recovery2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Recovery2025</span></a><br><a href="https://defcon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
Mx. Luna Corbden<p>I've been trying to figure out why I've been so tired lately. I had a long run of having enough energy to keep up, over the move and in the aftermath adjusting to life in the RV. This new tired is a little different, more sleepy and lethargic, not wanting to move or do anything, running out of battery after only a few minutes of effort. I feel far less stress and ongoing anxiety, just lethargy, and pain but only if I push it. My situation is stable now but won't be for long if I can't keep up.</p><p>I'm also finding I have less stomach for the trauma writing and research I'm usually involved in. Today I'm doing some editing on the Sexcommunicated appendix, relatively tame stuff considering that I read and watch about cults and have seen and experienced some horrific shit, and it's just, hard to get through even a couple of paragraphs even just about the effects on minors of LDS bishop interviews.</p><p>I'm not saying I want to go back to where I was in deep anxiety constantly, processing fresh ongoing personal traumas at a mile a minute, but I do think there are withdrawal effects from cortisol and whatever other stress hormones I was hooked on. I like not being on that shit, but do rather hate the adjustment. I hope it passes eventually. I was patient but it's been a week of this new state now, and entropy is creating new problems that need to be solved.</p><p>And I'm not sure what to do about not having the stomach for doing the reading I need to write and edit about trauma, in order to stop it happening to other people. It will probably pass. But I guess when I was feeling a certain baseline of my own stress feelings, and it's gone, then reading about it is... well it's just different.</p><p>I don't have as much stomach for horror these days, either. For many years deep in my Dark Sojourn that was the only kind of movie I could watch. Horror and documentaries about cults.</p><p><a href="https://defcon.social/tags/DarkSojourn" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>DarkSojourn</span></a> <a href="https://defcon.social/tags/Recovery2025" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Recovery2025</span></a> <a href="https://defcon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a></p>
MEActNOW<p>💔<br>Just had another talk with a mom who’s kid is treated for depression with antidepressants that aren’t helping. Turns out she always crashes after she does something, has POTS symptoms and cold hand and feet and most <a href="https://mastodon.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> symptoms. 3 weeks had the same talk with another mom.</p><p><a href="https://mastodon.social/tags/LongCovidKids" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCovidKids</span></a></p>
datum (n=1)<p>If your doctor, or the doctor of someone you know, is still suggesting exercise therapy for CFS or fatigue in general, that recommendation has now officially had peer review label it</p><blockquote><p>Outdated and misleading content; review unsuitable for clinical decisions</p></blockquote><p><a href="https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/detailed-comment/en?messageId=451525047" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">cochranelibrary.com/cdsr/doi/1</span><span class="invisible">0.1002/14651858.CD003200.pub9/detailed-comment/en?messageId=451525047</span></a></p><p>the full review: <a href="https://hbprojecttalk.wordpress.com/2025/03/13/iag-submission/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">hbprojecttalk.wordpress.com/20</span><span class="invisible">25/03/13/iag-submission/</span></a></p><p>main author <a href="https://mastodon.online/@hildabast" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="">mastodon.online/@hildabast</span><span class="invisible"></span></a> h/t <span class="h-card" translate="no"><a href="https://disabled.social/@tomkindlon" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>tomkindlon</span></a></span></p><p><a href="https://zeroes.ca/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a> <a href="https://zeroes.ca/tags/PEMS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEMS</span></a> <a href="https://zeroes.ca/tags/PEM" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PEM</span></a> <a href="https://zeroes.ca/tags/PostExertionalMalaise" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>PostExertionalMalaise</span></a> <a href="https://zeroes.ca/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> <a href="https://zeroes.ca/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a></p>
Tom Kindlon<p>Good to see this new comment from Hilda Bastian <span class="h-card" translate="no"><a href="https://mastodon.online/@hildabast" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>hildabast</span></a></span> , on behalf of the Independent Advisory Group for stakeholder engagement on the Cochrane review of exercise therapy for <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>CFS</span></a><br>"Outdated and misleading content; review unsuitable for clinical decisions"</p><p><a href="https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/detailed-comment/en?messageId=451525047" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">cochranelibrary.com/cdsr/doi/1</span><span class="invisible">0.1002/14651858.CD003200.pub9/detailed-comment/en?messageId=451525047</span></a></p><p><a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <span class="h-card" translate="no"><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener noreferrer" target="_blank">@<span>mecfs</span></a></span></p>
Stephanie Burgis<p>Today I'm really crashing with the M.E./CFS, which is no fun. However, it doesgive me the perfect excuse to remind everyone that I have a new cozy fantasy short story out! It involves M.E./CFS but also griffins and just a touch of sapphic romance. ;) </p><p><a href="https://www.sundaymorningtransport.com/p/mail-order-magic" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://www.</span><span class="ellipsis">sundaymorningtransport.com/p/m</span><span class="invisible">ail-order-magic</span></a></p><p><a href="https://wandering.shop/tags/fantasy" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>fantasy</span></a> <a href="https://wandering.shop/tags/mecfs" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>mecfs</span></a> <a href="https://wandering.shop/tags/spoonie" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>spoonie</span></a></p>
Anti. 🐘<p>· <a href="https://chaos.social/tags/LongCOVID" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>LongCOVID</span></a> and myalgic encephalomyelitis (<a href="https://chaos.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>MECFS</span></a>) have similarly impaired vascular function</p><p>· Long COVID prevalence is not declining</p><p>· Damage to the glymphatic system — which clears waste from the brain — and the blood-brain barrier may contribute to neurocognitive impairment in people with Long COVID</p><p><a href="https://thesicktimes.org/2025/03/25/research-updates-march-25/" rel="nofollow noopener noreferrer" translate="no" target="_blank"><span class="invisible">https://</span><span class="ellipsis">thesicktimes.org/2025/03/25/re</span><span class="invisible">search-updates-march-25/</span></a></p><p><a href="https://chaos.social/tags/Research" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>Research</span></a> <a href="https://chaos.social/tags/COVID19" class="mention hashtag" rel="nofollow noopener noreferrer" target="_blank">#<span>COVID19</span></a></p>
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