toad.social

illmarks Symptom: Guilt that a treatment is working. When I was trying to wrap my head around this new experience, I learned about <a href="https://en.wikipedia.org/wiki/Survivor_guilt#AIDS_survivor_syndrome" rel="nofollow noopener" target="_blank">AIDS Survivor Syndrome</a>. As I’ve <a href="https://www.illmarks.com/2024_5_14-plague-poem/" rel="nofollow noopener" target="_blank">referenced in earlier pieces</a>, and <a href="https://thesicktimes.org/2025/05/23/colorado-art-exhibition-showcases-creative-expressions-of-long-covid-advocates-for-research-and-treatment/" rel="nofollow noopener" target="_blank">said in interviews</a>, I often find kinship as I learn more about the HIV/AIDS pandemic. I see highly politicized, post-acute viral illnesses, which <a href="https://www.them.us/story/long-covid-trans-and-bisexual-people-healthcare-disparities" rel="nofollow noopener" target="_blank">disproportionately impact queer people</a>. I see pandemics which are <a href="https://www.afro.who.int/regional-director/speeches-messages/aids-not-over-address-inequalities-accelerate-inclusion-and" rel="nofollow noopener" target="_blank">ongoing</a> <a href="https://www.bunkhistory.org/resources/the-year-the-pandemic-ended-part-1" rel="nofollow noopener" target="_blank">yet treated as finished</a>, and have their <a href="https://apnews.com/article/hiv-programs-funding-aids-usaid-united-nations-e66658aa00bb5769f4ae260bcc22cbd4" rel="nofollow noopener" target="_blank">important</a> <a href="https://thesicktimes.org/2025/07/15/left-without-care-many-long-covid-clinics-are-closing-down-in-the-u-k/" rel="nofollow noopener" target="_blank">social</a> <a href="https://thesicktimes.org/2025/04/15/11-billion-cdc-funding-cuts-may-decimate-long-covid-response-in-several-states/" rel="nofollow noopener" target="_blank">supports</a> are <a href="https://thesicktimes.org/2025/06/11/minnesotas-unique-long-covid-program-retains-funding-following-advocacy/" rel="nofollow noopener" target="_blank">threatened</a> or <a href="https://thesicktimes.org/2025/06/19/the-federal-government-is-restricting-covid-19-vaccine-access-heres-what-that-means-for-the-ongoing-pandemic-and-people-with-long-covid/" rel="nofollow noopener" target="_blank">dismantled</a>. It’s important to note that my Long Covid has not jeopardized my life explicitly, and there are differences in how these illnesses are/were stigmatized. And yet I think this kinship matters less to me in easily defined traits than in the murky, isolating ones. Chronic illnesses <a href="https://themighty.com/topic/chronic-illness/what-its-like-being-in-between-sick-healthy/" rel="nofollow noopener" target="_blank">don’t always fit in sick/healthy or get better soon/terminal dualities</a>. There’s a wide range of symptom presentations and severity in Long Covid: from the people who have it for a few months and recover, to those of us whose illnesses are expected to be lifelong. Even for people who have “mild” Covid and “fully recover” without Long Covid, there are increased risks to their <a href="https://www.csbj.org/article/S2001-0370(24)00212-5/fulltext" rel="nofollow noopener" target="_blank">hearts</a>, <a href="https://www.medrxiv.org/content/10.1101/2023.09.10.23295343v1.full" rel="nofollow noopener" target="_blank">brains</a>, <a href="https://www.cdc.gov/mmwr/volumes/71/wr/mm7121e1.htm?s_cid=mm7121e1_w" rel="nofollow noopener" target="_blank">lungs</a>, and more, <a href="https://www.cdc.gov/mmwr/volumes/71/wr/mm7131a3.htm?s_cid=mm7131a3_w#print" rel="nofollow noopener" target="_blank">regardless of age</a>. And perhaps most on-theme for this blog, the overlap of these two pandemics mean <a href="https://bookshop.org/p/books/it-was-vulgar-and-it-was-beautiful-how-aids-activists-used-art-to-fight-a-pandemic-jack-lowery/17215945" rel="nofollow noopener" target="_blank">we can create our own version of the art activism which changed the course of the AIDS Pandemic</a>, and <a href="https://48hills.org/2024/10/opinion-is-it-time-for-an-act-up-for-long-covid/" rel="nofollow noopener" target="_blank">we should</a>.** email illmarks @ nyx mir . com if you want to make a long covid ACT UP together I was glad to learn this weird feeling was not just me, and it might also be someone reading this blog’s too, so here are a few quotes from Understanding “Post-AIDS Survivor Syndrome”: A Record of Personal Experiences by Stacy N. Broun, PhD. The situations are different, Long Covid today has nowhere near the efficacy of treatments as those for HIV in 1998. The medication which is helping me with the severity of my ME/CFS, doesn’t help with the aggressively chronic migraines, joint pain, and many other symptoms. I hope that there will be more effective treatments for us, and hopefully this blog will still be around, and if anyone feels some kind of way about having an effective treatment at long last–maybe they’ll be able to end up here and feel less alone.Some excerpts from Understanding “Post-AIDS Survivor Syndrome”: A Record of Personal Experiences:<ul><li>“For those HIV/AIDS affected persons, who have lived past 10 years or so and have been preparing to die, have not been working, have been viaticating life insurance policies, etc.—what happens to those people when they suddenly feel, as one patient put it, ‘sentenced to live.’ I have chosen to call this post-AIDS survivor syndrome.”</li></ul><ul><li>“The good news is that you may live, bringing with that hope, better health, new relationships, and fresh starts. The bad news is that you may live, bringing with it fear of change, fear of loss of support, new responsibilities, and compromised health. It is quite a paradox, one that for many has forced a reevaluation of their lives, sometimes bringing about a severe depression. The fear and uncertainty mixed with hope and the prospect of a long life has produced clinical symptoms of depression in many HIV-impacted patients.”</li></ul><ul><li>“There is survivor guilt; these people have watched friends and lovers die, and now they may not. While feeling grateful, they are angry that their loved ones did not have the same chances.”</li></ul>This is a lot of what I feel with regard to having a helpful medication for my <a href="https://www.meaction.net/long-covid-me-understanding-the-connection/" rel="nofollow noopener" target="_blank">ME/CFS-like Long Covid symptoms</a>. So many people I know and love, have ME/CFS and <a href="https://www.meartistsproject.com/" rel="nofollow noopener" target="_blank">have been sick for much, much longer</a>, and are <a href="https://25megroup.org/document/understanding-severe-me/" rel="nofollow noopener" target="_blank">significantly more severely impacted</a>. We have also (CW suicide!) <a href="https://themighty.com/topic/suicide/chronic-illness-and-risk-of-suicide/" rel="nofollow noopener" target="_blank">lost many in our communities</a>. <ul><li>“One of my patients, a woman, has been through so many wonder drugs that she does not comply with her medications because she does not want to get her hopes up and then have them smashed again.”</li></ul><ul><li>“I was interviewed by Laura Beil with the Dallas Morning News. She asked me […] How can anything that is so clearly good news be met with anything other than joy? My patients talk about living in the world of AIDS and, that if you are not there, you simply cannot understand.”</li></ul>I think that is another aspect, less so about the specific art upthread, but a larger and more difficult issue. My pocket friends, you are such wonderful company. Most people understand, here, maybe because you are already covid conscious, or because the art is helpful, or something else. I’ve also built a world and literally filled it with <a href="https://www.illmarks.com/" rel="nofollow noopener" target="_blank">hundreds of bodies, each impacted by the ongoing pandemic</a>. When I muster the ability to go do a thing, most of the bodies I see do not behave as though there is a pandemic. They also do not understand that I am sick, and have very different expectations of me. I often do not have the words or energy to explain either, which furthers the disconnection. <ul><li>“As David Levithan wrote in Utne Reader: ‘At first when my T cells went up, I was ecstatic. Then I got scared, because now I have more to lose. I’ve survived the experience of almost dying, then come back as healthy as before. But sometimes I wonder if I have the strength to go through that loss again. Moreover the loss cuts both ways: Even when things change for the better, there’s a sense of loss. As much as I want to recover, part of me got attached to an image of myself as fragile and needy. I was afraid of losing the support I’d gotten being sick.'”</li></ul>We are not yet at this place in Long Covid and related conditions, and many of us are still indefinitely ill. But when different treatments are effective and accessible, I hope people won’t blame themselves for feeling grief when losing an identity they had no choice but to accept to survive. “So, where do we go from here. I imagine that everyone with HIV wants answers and direction. Of any population that can deal with these new developments, you can. You have learned to live for today and in doing so, live your future. You have felt less control and lived with that too.”<a href="https://www.illmarks.com/symptom-guilt-that-a-treatment-is-working/" class="" rel="nofollow noopener" target="_blank">https://www.illmarks.com/symptom-guilt-that-a-treatment-is-working/</a><a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/actup/" target="_blank">#actup</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/aids/" target="_blank">#aids</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/aidspandemic/" target="_blank">#aidspandemic</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/art/" target="_blank">#art</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/body-mapping/" target="_blank">#bodyMapping</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/chronic-illness/" target="_blank">#chronicIllness</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/covid/" target="_blank">#covid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/granfury/" target="_blank">#granfury</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/hiv/" target="_blank">#hiv</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/hivpandemic/" target="_blank">#hivpandemic</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/long-covid/" target="_blank">#longCovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/longcovid/" target="_blank">#longcovid</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/me-cfs/" target="_blank">#meCfs</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/mecfs/" target="_blank">#mecfs</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/medart/" target="_blank">#medart</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/medical-art/" target="_blank">#medicalArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/millionsmissing/" target="_blank">#MillionsMissing</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pandemic/" target="_blank">#Pandemic</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwlc/" target="_blank">#pwLC</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/pwme/" target="_blank">#pwme</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/queer-art/" target="_blank">#queerArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/sars-cov-2/" target="_blank">#sarsCov2</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/sciart/" target="_blank">#SciArt</a> <a rel="nofollow noopener" class="hashtag u-tag u-category" href="https://www.illmarks.com/tag/survivors-guilt/" target="_blank">#survivorSGuilt</a>

Tom KindlonSarah-Jayne Lewis: Prevention of Future Deaths Report by coroner Debbie Rookes<a href="https://www.judiciary.uk/prevention-of-future-death-reports/sarah-lewis-prevention-of-future-deaths-report/" rel="nofollow noopener" translate="no" target="_blank">https://www.judiciary.uk/prevention-of-future-death-reports/sarah-lewis-prevention-of-future-deaths-report/</a>Screenshot from Science for ME weekly update<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

Tom Kindlon2/ "What needs to be done to improve services?There were lots of suggestions from patients and carers on how services could be improved. Here are the 10 that stood out:"<a href="https://www.pslhub.org/learn/improving-patient-safety/health-inequalities/improving-healthcare-services-for-people-with-me-and-long-covid-patients-share-their-challenges-and-the-actions-needed-r13267/" rel="nofollow noopener" translate="no" target="_blank">https://www.pslhub.org/learn/improving-patient-safety/health-inequalities/improving-healthcare-services-for-people-with-me-and-long-covid-patients-share-their-challenges-and-the-actions-needed-r13267/</a><a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a>

Tom KindlonImproving healthcare services for people with ME and Long Covid: Patients share their challenges, and the actions needed<a href="https://www.pslhub.org/learn/improving-patient-safety/health-inequalities/improving-healthcare-services-for-people-with-me-and-long-covid-patients-share-their-challenges-and-the-actions-needed-r13267/" rel="nofollow noopener" translate="no" target="_blank">https://www.pslhub.org/learn/improving-patient-safety/health-inequalities/improving-healthcare-services-for-people-with-me-and-long-covid-patients-share-their-challenges-and-the-actions-needed-r13267/</a>Although nominally about the NHS, nearly all of the issues raised are pretty international<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/PASC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PASC</a> <a href="https://disabled.social/tags/PwLC" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwLC</a> <a href="https://disabled.social/tags/postcovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid</a> <a href="https://disabled.social/tags/postcovid19" class="mention hashtag" rel="nofollow noopener" target="_blank">#postcovid19</a> <a href="https://disabled.social/tags/LC" class="mention hashtag" rel="nofollow noopener" target="_blank">#LC</a> <a href="https://disabled.social/tags/Covidlonghaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#Covidlonghaulers</a> <a href="https://disabled.social/tags/PostCovidSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#PostCovidSyndrome</a> <a href="https://disabled.social/tags/longhaulers" class="mention hashtag" rel="nofollow noopener" target="_blank">#longhaulers</a> 1/

Christina KochDa ich dazu hier noch nichts geschrieben habe: Diese Woche gefiel sich die Deutsche Gesellschaft für Neurologie (<a href="https://mastodon.social/tags/DGN" class="mention hashtag" rel="nofollow noopener" target="_blank">#DGN</a>) inklusive all ihrer Undercover-Häuptlinge darin, per Stellungnahme einen öffentlichen Kübel Jauche über 650.000 <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> Erkrankte auszukippen. Auf welchem Wege hier inhaltliche Mehrheiten für diese Bankrotterklärung ohne jede Quelle errungen wurden, sei mal dahingestellt. <a href="https://www.dgn.org/artikel/zum-aktuellen-forschungsstand-bei-me-cfs" rel="nofollow noopener" translate="no" target="_blank">https://www.dgn.org/artikel/zum-aktuellen-forschungsstand-bei-me-cfs</a>1/

miska knapekWhy is it so hard to get help for the immune disease <a href="https://mastodon.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> in public health, while medical research on it exists?- Lacking funding in public health to do clinical trials on existing and helpful treatments for MECFS, used in other diseases (like cancer).MECFS research gets 1% of HIV/AIDS funding, although it's more lethal and affects more.This interview with the former German health minister, explains the funding issues and MECFS patients being left without care.<a href="https://www.spiegel.de/politik/deutschland/karl-lauterbach-ueber-me-cfs-forschung-das-ist-ein-staatsversagen-a-a583df20-2959-4aa4-be14-4da688e01a6b?giftToken=299ddfad-5915-402a-a95e-a788d84c44fb" rel="nofollow noopener" translate="no" target="_blank">https://www.spiegel.de/politik/deutschland/karl-lauterbach-ueber-me-cfs-forschung-das-ist-ein-staatsversagen-a-a583df20-2959-4aa4-be14-4da688e01a6b?giftToken=299ddfad-5915-402a-a95e-a788d84c44fb</a>

Tom Kindlon31-minute podcast: GraceMarie Bricalli, President of the European ME Alliance, shared her insights on ME/CFS and the urgent need for recognition and support in the podcast 'Invisible Battles: The Unseen Realities of Neurological Conditions'.<a href="https://www.buzzsprout.com/2288089/episodes/17520164" rel="nofollow noopener" translate="no" target="_blank">https://www.buzzsprout.com/2288089/episodes/17520164</a><a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a>

Irish ME/CFS AssociationClip from Shannonside Northern Sound, Joe Finnegan spoke with Shirley McCreery about her daughter Sarah’s struggle to get diagnosed. She was given a diagnosis of CFS and bad advice to do graded exercise. Only after seeing Dr Nigel Speight did they finally get proper help.We organised this interview. Listen to the full 25-minute interview here: <a href="https://www.northernsound.ie/podcasts/the-joe-finnegan-show/podcast-me-cfs-263474" rel="nofollow noopener" translate="no" target="_blank">https://www.northernsound.ie/podcasts/the-joe-finnegan-show/podcast-me-cfs-263474</a><a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://mastodon.ie/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://mastodon.ie/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://mastodon.ie/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://mastodon.ie/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://mastodon.ie/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

Science4ME News BotScience for ME: News in Brief 21 - 27 Jul 2025This week's research articles, media items, advocacy and other news relating to <a href="https://mas.to/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> and <a href="https://mas.to/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a><a href="https://www.s4me.info/threads/news-in-brief-july-2025.44966/post-627466" rel="nofollow noopener" translate="no" target="_blank">https://www.s4me.info/threads/news-in-brief-july-2025.44966/post-627466</a>

Lotte SmelikMy body yesterday evening: doing some stuff in the kitchen? Sure, no problem! * Heart rate stays normal * My body just now: doing some stuff in the kitchen? Are you INSANE? * Heart rate sky rockets * <a href="https://chaos.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://chaos.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://chaos.social/tags/pacing" class="mention hashtag" rel="nofollow noopener" target="_blank">#pacing</a> <a href="https://chaos.social/tags/micropacing" class="mention hashtag" rel="nofollow noopener" target="_blank">#micropacing</a>

sickandsesame 🍉<a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener" target="_blank">@disability</a> really need some kind of help because unfortunately once I have to start pushing myself and adrenaline kicks in, my back muscle has jut enough strength to keep vs in place. Once I relax it's back to shit. Idk how to get treatment for this.<a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://disabled.social/tags/veryseveremecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#veryseveremecfs</a>

Tom Kindlon"Using language to describe ME"From the Winter 2024 InterAction magazine of Action for ME<a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/ChronicFatigueSyndrome" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicFatigueSyndrome</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://disabled.social/tags/CFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#CFS</a> <a href="https://disabled.social/tags/PwME" class="mention hashtag" rel="nofollow noopener" target="_blank">#PwME</a>

hauchSo next time you expect someone to explain something to you, ask yourself, would you be willing to learn about that topic yourself, just reading about it on your own? And if not, how can you expect someone else to repeat something to you, that you could just watch as a YouTube video, or read as a text.In some cases, that can be really selfish, especially if someone has to expose themself, or exert energy, they might already lack.3/3<a href="https://nrw.social/tags/Activism" class="mention hashtag" rel="nofollow noopener" target="_blank">#Activism</a> <a href="https://nrw.social/tags/Education" class="mention hashtag" rel="nofollow noopener" target="_blank">#Education</a> <a href="https://nrw.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://nrw.social/tags/Politics" class="mention hashtag" rel="nofollow noopener" target="_blank">#Politics</a>

Sarah dreams of beansFolks with <a href="https://friendhole.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> please share your wisdom about getting through a surgery without triggering permanent PEM hell 🫠<a href="https://friendhole.social/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a> <a href="https://friendhole.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://friendhole.social/tags/AdvicePlease" class="mention hashtag" rel="nofollow noopener" target="_blank">#AdvicePlease</a>

Arend (they) 🏳️‍⚧️🍉Yesterday was another hard day for my body, with aches that wouldn't relent, but there was still good.I rested in bed with my wedge pillows and weighted blanket.I had a nice walk with my partner. I did my stretches. I experienced some pain relief here and there. I made myself an easy, healthy meal.I had fun playing Zelda and Tactics Ogre.<a href="https://musicians.today/tags/3GoodThings" class="mention hashtag" rel="nofollow noopener" target="_blank">#3GoodThings</a> <a href="https://musicians.today/tags/fibro" class="mention hashtag" rel="nofollow noopener" target="_blank">#fibro</a> <a href="https://musicians.today/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://musicians.today/tags/ChronicIllness" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllness</a>

Christina KochGenau vor zwei Jahren waren mein Freund und ich im Wanderurlaub in Schottland. Drei Wochen sind wir durch schönste Landschaften gewandert, haben Berge erklommen und Täler durchschritten. Am Tag unserer Rückkehr wurde ich krank – und nie wieder gesund. Ich bin seit über einem Jahr 23h/Tag bettlägerig und kann die Wohnung nicht mehr verlassen. <a href="https://mastodon.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://mastodon.social/tags/POTS" class="mention hashtag" rel="nofollow noopener" target="_blank">#POTS</a> <a href="https://mastodon.social/tags/MCAS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MCAS</a> <a href="https://mastodon.social/tags/CCI" class="mention hashtag" rel="nofollow noopener" target="_blank">#CCI</a>

Tom Kindlon<a href="https://a.gup.pe/u/chronicillness" class="u-url mention" rel="nofollow noopener" target="_blank">@chronicillness</a> <a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener" target="_blank">@spoonies</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://disabled.social/tags/MEcfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#MEcfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a> <a href="https://disabled.social/tags/chronicillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#chronicillness</a> <a href="https://disabled.social/tags/chroniclife" class="mention hashtag" rel="nofollow noopener" target="_blank">#chroniclife</a> <a href="https://disabled.social/tags/ChronicPain" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicPain</a> <a href="https://disabled.social/tags/Spoonielife" class="mention hashtag" rel="nofollow noopener" target="_blank">#Spoonielife</a> <a href="https://disabled.social/tags/hiddenillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#hiddenillness</a> <a href="https://disabled.social/tags/invisibleillness" class="mention hashtag" rel="nofollow noopener" target="_blank">#invisibleillness</a> <a href="https://disabled.social/tags/ChronicIllnesses" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllnesses</a> <a href="https://disabled.social/tags/Spoonies" class="mention hashtag" rel="nofollow noopener" target="_blank">#Spoonies</a> <a href="https://disabled.social/tags/Spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#Spoonie</a> <a href="https://disabled.social/tags/ChronicallyIll" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicallyIll</a> <a href="https://disabled.social/tags/ChronicIllnessMemes" class="mention hashtag" rel="nofollow noopener" target="_blank">#ChronicIllnessMemes</a>

Robot DiverA wonderful friend showed up to dinner last night with a bag of pants for me - Canadian pants, not UK pants, but amazingly Lucy and Yak pants, so actually UK pants, lol.I only own about three pairs in total because I can never find ones that fit right, so my wardrobe has suddenly doubled. I have fabric ready for several pairs of pants but because of my M.E. I still haven't been able to set up my sewing studio since we moved in September. Unknowingly a small gesture has reduced my stress levels in a way I can't quite articulate. Never doubt how a small act of kindness can change another person's life for the better! <a href="https://starlite.rodeo/tags/kindness" class="mention hashtag" rel="nofollow noopener" target="_blank">#kindness</a> <a href="https://starlite.rodeo/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a>

Tom Kindlon3/ A number of people in the comments on my FB page have mentioned using a collapsible (lightweight) stool <a href="https://disabled.social/tags/MyalgicEncephalomyelitis" class="mention hashtag" rel="nofollow noopener" target="_blank">#MyalgicEncephalomyelitis</a> <a href="https://disabled.social/tags/spoonies" class="mention hashtag" rel="nofollow noopener" target="_blank">#spoonies</a> <a href="https://a.gup.pe/u/mecfs" class="u-url mention" rel="nofollow noopener" target="_blank">@mecfs</a> <a href="https://a.gup.pe/u/longcovid" class="u-url mention" rel="nofollow noopener" target="_blank">@longcovid</a> <a href="https://a.gup.pe/u/pots" class="u-url mention" rel="nofollow noopener" target="_blank">@pots</a> <a href="https://a.gup.pe/u/spoonies" class="u-url mention" rel="nofollow noopener" target="_blank">@spoonies</a> <a href="https://a.gup.pe/u/disability" class="u-url mention" rel="nofollow noopener" target="_blank">@disability</a> <a href="https://disabled.social/tags/disability" class="mention hashtag" rel="nofollow noopener" target="_blank">#disability</a> <a href="https://disabled.social/tags/disabilityaid" class="mention hashtag" rel="nofollow noopener" target="_blank">#disabilityaid</a> <a href="https://disabled.social/tags/disabilityaids" class="mention hashtag" rel="nofollow noopener" target="_blank">#disabilityaids</a> <a href="https://disabled.social/tags/spoonies" class="mention hashtag" rel="nofollow noopener" target="_blank">#spoonies</a> <a href="https://disabled.social/tags/spoonie" class="mention hashtag" rel="nofollow noopener" target="_blank">#spoonie</a> <a href="https://disabled.social/tags/mecfs" class="mention hashtag" rel="nofollow noopener" target="_blank">#mecfs</a> <a href="https://disabled.social/tags/LongCovid" class="mention hashtag" rel="nofollow noopener" target="_blank">#LongCovid</a>

CloverStatement der Deutschen Gesellschaft für ME/CFS zur Stellungnahme der Deutschen Gesellschaft für Neurologie (vom 22.07.2025) <a href="https://www.mecfs.de/statement-zur-stellungnahme-der-dgn/" rel="nofollow noopener" translate="no" target="_blank">https://www.mecfs.de/statement-zur-stellungnahme-der-dgn/</a><a href="https://norden.social/tags/MECFS" class="mention hashtag" rel="nofollow noopener" target="_blank">#MECFS</a> <a href="https://norden.social/tags/Neurologie" class="mention hashtag" rel="nofollow noopener" target="_blank">#Neurologie</a>

Recent searches

Search options

Administered by:

Server stats:

#mecfs