hi, a quick #introduction 👋
I'm Toedel and I suffer from #MECfs which has left me completely house bound and on most days mostly bed bound as well.
I'm an avid reader of #AudioBooks which leaves my hands free for making pretty things. #fiberarts #knitting #crochet #CrossStitch #embroidery
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@tomkindlon@disabled.social
·
4d ago
Tom Kindlon
@tomkindlon@disabled.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 29 years. 26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie
disabled.social
ME Research UK:
Orexin is a chemical messenger produced in the brain. Disruptions in the orexin system produce symptoms that overlap with long COVID and ME/CFS. A review discusses whether it is feasible that disruptions relating to orexin could be linked to long COVID. https://tinyurl.com/5b34px25
#mecfs #longcovid @mecfs@fedigroups.social @longcovid@fedigroups.social
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@juchti@mastodon.social
·
5d ago
Christina Koch
@juchti@mastodon.social
Der Stil ist die Physiognomie des Geistes. (Schopenhauer) Köpenickerin, jetzt im Rheingau. Lehrerin. Antifaschistin. LGBTQIA+ Ally. Seit August 2023 schwer an ME/CFS, POTS, MCAS und CCI erkrankt und 23h/Tag bettlägerig. Ein ❤️ für Prog und die Liebe. Nur der 1. FC Union Berlin #SchönerEisernOhneNazis #fcunion #eisern #bildung #fediLZ #progressiverock #wandern #mecfs #longcovid #mekills #chronicillness
mastodon.social
Liebes Fediverse,
könntet ihr dieses Reel von #MEcfs Betroffenen verbreiten, damit mehr Menschen über ME (Myalgische Enzephalomyelitis) erfahren?
Es zeigt eindrucksvoll, wie schwer die Erkrankung werden kann, wie klein der Lebensraum, und wie unbeachtet die Erkrankung trotz über 650.000 Betroffenen allein in Deutschland.
Es zeigt auch, dass Erkrankungen, die überwiegend Frauen betreffen, oft deutlich weniger Aufmerksamkeit und Forschung erhalten.
Danke an alle, die es teilen! ♥️💙
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@tomkindlon@disabled.social
·
Jun 09, 2026
Tom Kindlon
@tomkindlon@disabled.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 29 years. 26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie
disabled.social
I like many other people thought this blog post was very good
"Why I Can’t Just Meet You for Dinner"
https://substack.com/home/post/p-178293036
Screenshot from AMMES May 2026 Newsletter
#MEcfs @longcovid@fedigroups.social
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #PEM #PostExertionalMalaise
#PwME #ME #MyalgicE
@mecfs@fedigroups.social
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@tomkindlon@disabled.social
·
Jun 09, 2026
Tom Kindlon
@tomkindlon@disabled.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 29 years. 26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie
disabled.social
Researchers including Dr Bo Bertilson, funded by ME Research UK alongside the OMF and the Amar Foundation, have identified that protein signatures in cerebrospinal fluid differ between groups of people with ME/CFS.
Read more about the study here: https://bit.ly/4vxGNYS
#mecfs #pwme #cfs @mecfs@fedigroups.social
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@PaulaToThePeople@climatejustice.social
·
May 25, 2026
PaulaToThePeople 😷
@PaulaToThePeople@climatejustice.social
Paula (she/her), nonbinary. #ClimateJustice & #ClimateCommunication #AnimalAssisted & #SocialPedagogy #empathy & #solidarity #mindfulness & #degrowth #Fediverse #FediverseFoundation & #JoinFediverseWiki #HumanRights & #NoAI
climatejustice.social
QUESTIONS
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My main question is for tips on how to manage orthostatic hypotension.
There is a lot of discussion about what to concentrate on during training with hypotension versus hypertension, but the first question is probably: Should I even treat this as a hypotension and concentrate on getting my blood pressure up or should I rather concentrate on better regulation of blood pressure, if that is even possible. For example for burnout I learned that to reduce stress the goal is not to get the heart rate down, but to increase the heart rate variability (HRV). Is there such a thing as training for blood pressure variability/flexibility?
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Next question is for tips on how to manage burnout and PAIS if and when I get both at the same time.
My burnout management involves lots of activities ranging from light intensity long walks to sprints and high intensity interval training and strength training as well as lots of meditation, breathing exercises. I try to go for a walk for at least one hour after every meal, because (at least during a sick-leave) meals cause the most and longest lasting stress if I don't walk it out. That's why I try to eat only once a day at noon - eating in the evening can ruin my sleep.
My management during an infection that feels like the start of a PAIS involves lots of sleeping without any circadian rhythm detectable and very little activity.
My management of PAIS involves pacing which I'm not good at yet though. It's really hard to know what is too much and what is too little. But I guess I can't be very wrong with just lots of slow walking without too much uphill parts.
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Now if you have any other general tips on managing any of the mentioned ailments feel free to let me know. I didn't mention everything I know already, but feel free to also mention things you assume I already know.
#FollowerPower #PleaseHelp #AskFedi #question #burnout #pais #PostCovid #LongCovid #MECFS #FatigueSyndrome #fatigue #orthostasis #OrthostaticHypotension #OrthostaticDysregulation #pacing #HRV #BloodPressure #BloodPressureManagement #syncopation #BurnoutManagement #PAISManagement
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@PaulaToThePeople@climatejustice.social
·
May 25, 2026
PaulaToThePeople 😷
@PaulaToThePeople@climatejustice.social
Paula (she/her), nonbinary. #ClimateJustice & #ClimateCommunication #AnimalAssisted & #SocialPedagogy #empathy & #solidarity #mindfulness & #degrowth #Fediverse #FediverseFoundation & #JoinFediverseWiki #HumanRights & #NoAI
climatejustice.social
I have questions to people who have knowledge about Burnout, PAIS (post-acute infection syndromes, like Post/Long-Covid, ME/CFS, etc…), orthostatic hypotension, blood pressure management, fitness, pacing, etc.
This will be a long post and you don’t have to read all of it. Just look for the paragraph with the headline “questions” in the first reply. I’m mostly writing so much to get my own thoughts in order.
NOTICE
I’m asking this here in the Fediverse because this is the best place to reach actual people who know stuff. Before the ecocide slop boom I’d have started with internet research, but that’s no real option anymore. If an account answers me that seems like AI it will be blocked. If you answer me with what you just found on random internet sites, you will be blocked. Everybody else: Thank you! Btw you don’t have to be a formal expert on any of the subject matters. Anecdotal evidence by people affected or relatives is highly valuable too.
BACKGROUND
I’m prone to both burnout and PAIS (undiagnosed, because the health system is inadequate) but haven’t yet had both of them at the same time. This might be different now. My burnout is definitely back and I’m having an infection that feels a lot like it will turn into a PAIS. I’ve had a PAIS two times both starting in MAy of 2024 and 2025 and lasting for 3 months each. So this would be the right time to get it again. Since the last PAIS I’ve had two infections though that felt like the start of PAIS, but I probably stopped them with lots of medication, supplements and other methods. My last sick-leave was due to my first burnout for 6 weeks (obviously not long enough). I’m on sick-leave again since Wednesday because the burnout is back - the infection broke out one day later, but probably already made my body weaker before, playing a role in the burnout-relapse.
MY SYMPTOMS
For burnout my main symptoms are: tinnitus, tensions in the ear, jaw & neck area, headaches, bad sleep, fatigue, susceptibility to stress, low psychic resilience. For the PAIS its fatigue, bad sleep, brain fog, bad performance in all systems (fitness, cognition, social, etc..), malaise, some symptoms of a cold or allergy (constant tingle in my nose, running nose, sometimes coughing and sneezing, …) and bad memory that lasts longer than everything else (years instead of months).
SPECIAL SYMPTOM: ORTHOSTATIC HYPOTENSION
I’ve had bad orthostatic hypotension as a child with regular syncopations. It has gotten better (rarer) and I’ve learned how to deal with it, at least a bit. I do still have it whenever I have an illness that makes me bedridden, like infections and depressions. There are basically 4 levels: 1 (usually without positional change): I feel that something is wrong with my orthostasis. 2 (usually with some positional change, like from lying to sitting): I feel dizzy and weak, like my brain is not supplied with blood as it should be, but no signs of unconsciousness. 3 (usually when changing from lying to standing): I feel my conciseness fading, I get tunnel vision, my legs let up and I have to hold tight to make sure I don’t fall. I get the feeling of a slight dissociation, but I’m still there enough to control it and it slowly fades away giving me a warm comfortable feeling when the blood flows back to everywhere where it’s needed.
- (sometimes combined with 3 and me not controlling it well, sometimes immediately after standing up too quick after lying for a while): I loose consciousness and fall down, sometimes banging my head badly. I haven’t had this level since my teenage years and my consciousness always came back immediately when I’m on the ground. Now I’ve learned that orthostatic hypotension is both a symptom and a risk factor for PAIS and since I’ve had it forever I think it might be a good idea to learn to manage it better as to not get PAIS again or at least less frequent.
#FollowerPower #PleaseHelp #AskFedi #question #burnout #pais #PostCovid #LongCovid #MECFS #FatigueSyndrome #fatigue #orthostasis #OrthostaticHypotension #OrthostaticDysregulation #pacing #HRV #BloodPressure #BloodPressureManagement #syncopation #BurnoutManagement #PAISManagement
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@AncTreat5358@lgbtqia.space
·
May 08, 2026
Alex 
@AncTreat5358@lgbtqia.space
Agender queer vegan minimalist atheist AuDHDer living in perfect harmony with a sweet kitty. Health: Sjogren's; ME/CFS; CRPS; Mild Cognitive Impairment; Auditory Processing Disorder Interests: photography, fine art, YouTube channels, Apple ecosystem, invisible illnesses, etymology, global awareness, plants, WFPB diet, LGBTQ issues, trans rights, small business (especially women- & minority-owned), and pinball. Oh, and most importantly, I celebrate cats! Posts auto-deleted after one month.
lgbtqia.space
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@OctaviaConAmore@cutie.city
·
Jun 02, 2025
Octavia Con Amore 
Succubard's Library
Succubard's Library
@OctaviaConAmore@cutie.city
A queer little succubus bard using her voice to enchant and soothe people~ 
--------------- 
Pronouns: She/Her 
Languages: JP/EN (both native) 
Age: my violin career could legally drink 
Extra notes: 
Please do not interact with my nsfw posts if you're a minor 
Oh, and don't be afraid to DM if you'd like to ask questions or just chat~ --------------- mastodon.lol → tech.lgbt → vulpine.club → cutie.city If you'd like to help me have food to eat: Ko-fi: https://ko-fi.com/octaviaconamore Patreon: https://www.patreon.com/c/octaviaconamore Every bit helps me survive to play another day 
cutie.city
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@tomkindlon@disabled.social
·
May 01, 2026
Tom Kindlon
@tomkindlon@disabled.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 29 years. 26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie
disabled.social
This was posted today by Daniel Missailidis, PhD, a sympathetic researcher. https://redcap.latrobe.edu.au/redcap/surveys/?s=XHX3CREK8Y49NTDM
He has added in other posts:
- it just requires one blood draw and a short survey
- We need ~25 more women with LC and ~5 more women with ME/CFS
- Healthy women also needed.
#MEcfs #LongCovid @mecfs@fedigroups.social @longcovid@fedigroups.social #auscovid19
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@GNUmatic@mastodon.trueten.de
·
May 02, 2026
Majestästbeleidigung e.V.
@GNUmatic@mastodon.trueten.de
Offense Against the Crown, Inc. Ⓐ Die Satire ist tot; besiegt von einer Realität™, die jeder Beschreibung spottet. Hoch lebe die Satire! Hurra! Satire is dead; defeated by a reality®, that mockingly defies any description. Long live satire! Hooray! ¯\_(ツ)_/¯ ❤️🖤 #Antifa member card #Anarchy #syndicalism #fnord #bullshitJobs #Energiewende #Antriebswende #EV #BEV #FreeSoftware #Debian #GNU #Linux #osint #StandWithUkraine ...
mastodon.trueten.de
„Moin! Magste wegen Long #COVID oder #MECFS in die Klapse?“
„Bitte waaas?“
„Ja solange weder Ärtzte noch Kassen überhaupt Codes dafür haben, weil auch 2026 noch immer der ICD-10, statt die seit 2022 aktualisierte ICD-11 Katalog gilt, gibt es diese Krankheiten offiziell alle gar nicht, also musst du dir das ja einbilden.“
Gefällt Euch nicht? Hier lang!
https://epetitionen.bundestag.de/petitionen/_2025/_09/_16/Petition_186702.$$$.a.u.html
#ICD11
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@IrishMECFSAssociation@mastodon.ie
·
Apr 30, 2026
Irish ME/CFS Association
@IrishMECFSAssociation@mastodon.ie
The Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Association – for Information, Support & Research. NB: Posts should not be considered advice. Registered Charity Number: 20100254 CHY 22039 #MEcfs #PwME Currently also sharing some items relating to #LongCovid given various research studies have found a significant percentage satisfy ME/CFS criteria
mastodon.ie
RE: https://mastodon.ie/@IrishMECFSAssociation/116431267742450459
One week to go. Apart from the people who responded to the FB event (one going, 23 interested), two other people have said they hope to attend.
#MEcfs #PwME @mecfs@fedigroups.social
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@juchti@mastodon.social
·
Apr 30, 2026
Christina Koch
@juchti@mastodon.social
Der Stil ist die Physiognomie des Geistes. (Schopenhauer) Köpenickerin, jetzt im Rheingau. Lehrerin. Antifaschistin. LGBTQIA+ Ally. Seit August 2023 schwer an ME/CFS, POTS, MCAS und CCI erkrankt und 23h/Tag bettlägerig. Ein ❤️ für Prog und die Liebe. Nur der 1. FC Union Berlin #SchönerEisernOhneNazis #fcunion #eisern #bildung #fediLZ #progressiverock #wandern #mecfs #longcovid #mekills #chronicillness
mastodon.social
Auch in Österreich ist die Lage der #MEcfs und #LongCovid Erkrankten besch*ssen.
Starke Recherche zu Gutachter*innenschulungen in Österreich!
⬇️
"Im Vorjahr hat unsere Recherche gezeigt: PVA-Gutachter erkennen die Diagnosen ME/CFS und Post-Covid sehr oft nicht an. Jetzt liegen ORF, DOSSIER und APA geheime Schulungs-Unterlagen für Gutachter vor, die Hinweise liefern, dass das so gewollt sein könnte."
Constanze Ertl
https://orf.at/stories/3428120/
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@nak@social.domov.de
·
Mar 14, 2026
Andreas Ufert
@nak@social.domov.de
Born CO2 level 329ppm #opensource enthusiast #MECFS caregiver #linux, #foss, #bahn, #severeME
social.domov.de
Am zweiten Maiwochenende finden auch 2026 wieder bundesweite Demonstrationen statt, um auf die Situation von #MECFS Betroffenen aufmerksam zu machen: auf deren gesundheitlich oft prekäre Situation, auf die miserable Versorgungslage, fehlendes Wissen, fehlende Medikamente...
Wer von den Betroffenen kommen kann, wird selbst da sein. Viele Schwer- und Schwerstbetroffene können das jedoch nicht, sie lassen sich von Freunden und Familie vertreten.
Mehr unter mecfs-info.de
#mecfs #liegenddemo
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📺 https://peer.adalta.social/w/kqRH8K2ZTgjShFoaNHUR1g 🔗 🇩🇪🇺🇸🇫🇷 🔗 ℹ️
La publication d’un plan de soins spécialisé marque un tournant dans la prise en charge de ces pathologies invalidantes.
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@docjosiahboone__dup_45560@wien.rocks
·
Feb 22, 2026
Wolfgang Hagen
@docjosiahboone__dup_45560@wien.rocks
:: Internist mit Interesse an COVID-19. Kein Virologe :: Obsession: John Coltrane & Rapid Wien :: WienLiebe :: Stadtradler :: #COVID19 #COVID19at #LongCovid #Medizin #MedizinBrennt #SKRapid #WienLiebe #Fahrrad #KlimaWende
wien.rocks
Der schwerst an #LongCovid #MECFS erkrankte Samuel wählte an seinem 21. Geburtstag den assistierten Suizid. Im Sinne seines letzten Wunsches, dass sein Tod "nicht umsonst" gewesen sein solle, erzählen seine Mutter und sein behandelnder Arzt über ihn und über die Versorgungsmängel bei ME/CFS.
https://on.orf.at/video/14311920/hinter-den-schlagzeilen-mutter-von-me-cfs-opfer-sein-tod-soll-nicht-umsonst-sein
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@juchti@mastodon.social
·
Feb 12, 2026
Christina Koch
@juchti@mastodon.social
Der Stil ist die Physiognomie des Geistes. (Schopenhauer) Köpenickerin, jetzt im Rheingau. Lehrerin. Antifaschistin. LGBTQIA+ Ally. Seit August 2023 schwer an ME/CFS, POTS, MCAS und CCI erkrankt und 23h/Tag bettlägerig. Ein ❤️ für Prog und die Liebe. Nur der 1. FC Union Berlin #SchönerEisernOhneNazis #fcunion #eisern #bildung #fediLZ #progressiverock #wandern #mecfs #longcovid #mekills #chronicillness
mastodon.social
Es tut mir so gut, draußen unterwegs zu sein. Aber es kostet meinen Körper so viel Kraft. Es ist, als bräuchte ich unglaublich viel Kraft, mich aufrecht zu halten. Die Muskeln müssen so irre viel arbeiten. Was für Dreckskrankheiten sind das bloß, verdammte Hacke!
#MEcfs #POTS #CCI #MCAS
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@tomkindlon@disabled.social
·
Feb 02, 2026
Tom Kindlon
@tomkindlon@disabled.social
95% of posts on #MyalgicEncephalomyelitis, #LongCovid or #chronicillness. With ME/CFS 37 years, severely affected 31 years. Health has deteriorated post Covid (March 2022). Irish ME/CFS Association* trustee 29 years. 26 publications in peer-reviewed journals. MEpedia entry which has links to my social media accounts (among other things): https://me-pedia.org/wiki/Tom_Kindlon #ChronicFatigueSyndrome #MECFS #PwME #fedi22 *IrishMECFSAssociation@mastodon.ie
disabled.social
Living with #MECFS
All of these things can be out of reach, or close to, for some #MyalgicEncephalomyelitis patients. Some will be able to attain some of these things at certain points during their illness.
From Lu Baker Art https://instagram.com/lubakerart
(repeat)
#CFS #PwME #ChronicFatigueSyndrome @mecfs@fedigroups.social
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