#longcovid — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #longcovid, aggregated by home.social.
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RTL deed onderzoek onder de longCovid patiënten in hun panel (representatief voor NL).
https://www.rtl.nl/nieuws/binnenland/artikel/5649003/corona-post-long-covid-onderzoek-enquete-politiek-peiling-panel -
CW: :boosts_ok: disability, long covid, TMI, educational
look, I try not to overshare, but there's something that I need people to understand so I'm writing it and my reason is "I'm a bard and a succubus, what did you expect? :bear_shrug: " (in return, I'll use capital letters and punctuation and stuff)
I and a lot of others disabled by long covid repeat the same line over and over: mask up and do what you can to prevent spread.
But... I don't think people quite get the reality of disability via long covid and me/cfs. I'm not missing a limb or a sensory organ. Physically, my body exists in its entirety. The underlying systems, though? absolutely shot. I went from being able to heavily exhert myself over 8~10h per day to not being able to stand more than 5 minutes before needing multiple hours of lay-down rest. What's more, me/cfs means over-exherting myself *decreases* my max stamina unlike a healthy mammalian body.
Simply put, this means I can't have sex. 5 minutes of exhertion could set my already shot systems back a month or more. 10+ minutes could set me back half a year. (Of course, this also means I can't do any other sorry if activity that involves anything physical and that includes talking which I get to do 1 hour of power week.)
Oh, what's that? Partner literally in bed, both of us wanting to do things? Too bad. Frustrated from not being able to have sex for over a year despite multiple chances to do so? Too bad. Want to at least give myself some relief? How many months of recovery am I willing to throw away?
No matter how pent up I get, no matter how many chances and willing partners I have, I can't do anything about it unless I'm willing to further destroy what little function I have left.
By not making and taking other precautions, that's the hell that you attempt to kick people into. On purpose.
#Disability #Covid #LongCovid #MECFS
p.s. Just to super clarify, there is no way for me to efficiency my way out of this reality. I could be an absolute pillow princess and do 0% of the work and that would still cause my body damage after 5 minutes, probably sooner.
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In het verleden gaf ik het voor m'n dossier door aan de huisarts als ik weer een tijdje niks proefde, maar dat leidt elke keer tot zo'n gesprek dat mij een halve gare doet voelen dat ik daar maar mee gestopt ben. Ik heb daar geen energie meer voor.
#LongCovid -
@apontious Couldn't agree more with this comment from your bio if I tried. It’s such a small thing to do to protect yourself and others.
#COVID #CovidIsNotOver #LongCovid -
From Germany 🇩🇪
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)
https://www.researchsquare.com/article/rs-10851936/v1
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #PostExertionalMalaise
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From Germany 🇩🇪
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)
https://www.researchsquare.com/article/rs-10851936/v1
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #PostExertionalMalaise
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From Germany 🇩🇪
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)
https://www.researchsquare.com/article/rs-10851936/v1
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #PostExertionalMalaise
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From Germany 🇩🇪
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)
https://www.researchsquare.com/article/rs-10851936/v1
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #PostExertionalMalaise
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From Germany 🇩🇪
Registered interventional trials fail to cover patient-prioritised treatments in Post-COVID condition (PCC)
https://www.researchsquare.com/article/rs-10851936/v1
Screenshot from latest Science for ME weekly update
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #PostExertionalMalaise
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A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
A new U.S. clinical trials program called PROBE-PASC was announced at the conference in Amsterdam
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
Check out the latest News in Brief (Aug. 31 - Sept. 6) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/ -
Check out the latest News in Brief (Aug. 31 - Sept. 6) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/ -
Check out the latest News in Brief (Aug. 31 - Sept. 6) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/ -
Check out the latest News in Brief (Aug. 31 - Sept. 6) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/ -
Check out the latest News in Brief (Aug. 31 - Sept. 6) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-719398
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
https://
s4me.info/threads/welcome.38181/ -
Does anyone know of a cleaner or cleaning agency, in #Dublin which deals compassionately with #disabled people and #neurodivergent people?
I've a hard time paying people who come into my home to clean & treat me with distain & are judgemental.
It's not worth the stress.
#LongCovid -
From Germany 🇩🇪
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID
https://psycnet.apa.org/fulltext/2028-18753-001.html
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
From Germany 🇩🇪
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID
https://psycnet.apa.org/fulltext/2028-18753-001.html
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
From Germany 🇩🇪
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID
https://psycnet.apa.org/fulltext/2028-18753-001.html
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
From Germany 🇩🇪
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID
https://psycnet.apa.org/fulltext/2028-18753-001.html
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
From Germany 🇩🇪
Impaired Auditory Sensory Gating as a Neurophysiological Correlate of Cognitive Fatigue in Long COVID
https://psycnet.apa.org/fulltext/2028-18753-001.html
Screenshot from latest Science for ME weekly update
Hashtags:
@longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #PostCovidSyndrome #LC #Covidlonghaulers #longhaulers #COVIDBrain #NeuroPASC -
Virus reactivation in acute and long COVID-19 | Nature
#COVID #LongCovid
https://share.google/NobyHk5t1zuJ9UdKW -
Kritische bespreking #PECorona: getuigenissen Carola Schouten & Ferd Grapperhaus. https://locovid.nl/weekbericht-covid19-2026-36/#Media
Nog steeds stelt de commissie de verkeerde vragen. Veel mensen op SM vinden dat maatregelen mensenrechten geschonden hebben, maar kritische vragen hierover kunnen makkelijk gepareerd worden: anders code zwart of nóg meer doden.
De DOELSTELLINGEN waren echter FOUT: de VERSPREIDING vh virus moet geminimaliseerd worden.
#LoCovid #COVID19 #qp2t #LongCovid #NoAI #WegvanBikTeg
>5 << END
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Darf es mir gut gehen, obwohl es mir schlecht geht?
Auch inmitten von schwerer Krankheit und Einschränkungen sind schöne und zufriedene Momente möglich. Diese Momente sind erlaubt.
Und ein bisschen mehr "im Moment sein" würde uns allen gut tun.
Zu meinem aktuellen Blogartikel: https://longcovidonline.blog/2026/09/07/darf-es-mir-gut-gehen-obwohl-es-mir-schlecht-geht/
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Hier muss dringend etwas unternommen werden. Betroffene werden zur Teilnahme an Rehabilitationsmaßnahmen gezwungen, die potenziell ihren Gesundheitszustand verschlechtern.
Die Petition Keine Reha-Pflicht bei ME/CFS – Rehabilitation muss freiwillig sein ist mir wichtig! ✍️ Bitte unterschreibe auch:
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Hier muss dringend etwas unternommen werden. Betroffene werden zur Teilnahme an Rehabilitationsmaßnahmen gezwungen, die potenziell ihren Gesundheitszustand verschlechtern.
Die Petition Keine Reha-Pflicht bei ME/CFS – Rehabilitation muss freiwillig sein ist mir wichtig! ✍️ Bitte unterschreibe auch:
-
Hier muss dringend etwas unternommen werden. Betroffene werden zur Teilnahme an Rehabilitationsmaßnahmen gezwungen, die potenziell ihren Gesundheitszustand verschlechtern.
Die Petition Keine Reha-Pflicht bei ME/CFS – Rehabilitation muss freiwillig sein ist mir wichtig! ✍️ Bitte unterschreibe auch:
-
Hier muss dringend etwas unternommen werden. Betroffene werden zur Teilnahme an Rehabilitationsmaßnahmen gezwungen, die potenziell ihren Gesundheitszustand verschlechtern.
Die Petition Keine Reha-Pflicht bei ME/CFS – Rehabilitation muss freiwillig sein ist mir wichtig! ✍️ Bitte unterschreibe auch:
-
Hier muss dringend etwas unternommen werden. Betroffene werden zur Teilnahme an Rehabilitationsmaßnahmen gezwungen, die potenziell ihren Gesundheitszustand verschlechtern.
Die Petition Keine Reha-Pflicht bei ME/CFS – Rehabilitation muss freiwillig sein ist mir wichtig! ✍️ Bitte unterschreibe auch:
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https://www.europesays.com/it/668772/ Quella stanchezza che non passa: cosa hanno scoperto studiando cinque malattie molto diverse #ArtriteReumatoide #DisturboDaStressPostTraumatico #EpiSwitch #Health #HunterE #IT #Italia #Italy #JournalOfTranslationalMedicine #LongCovid #ME/CFS #orion #Salute #SclerosiMultipla #UniversityOfEastAnglia
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"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
-
"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
-
"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
-
"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
-
"Why Is No One Talking About Long COVID?
— Attention has waned but patients are still suffering"
https://www.medpagetoday.com/opinion/second-opinions/122902
Pretty good basic info, but sadly ME/CFS is not mentioned even though COVID infections can trigger ME/CFS. The number of ME/CFS cases have increased since the pandemic.
See this Bateman Horne blog post ("COVID-19 Triggers ME/CFS") for more:
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THIS: "Millions of Americans are thought to be suffering but not receiving appropriate clinical care. Furthermore, even now, well after the acute phase of the #COVID pandemic has passed, an estimated 30,000 Americans are newly diagnosed with #LongCOVID each year. But this is far fewer than expected, based on 2023 data. Thus, long COVID appears to have become a hidden cause of disease and disability."
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THIS: "Millions of Americans are thought to be suffering but not receiving appropriate clinical care. Furthermore, even now, well after the acute phase of the #COVID pandemic has passed, an estimated 30,000 Americans are newly diagnosed with #LongCOVID each year. But this is far fewer than expected, based on 2023 data. Thus, long COVID appears to have become a hidden cause of disease and disability."
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THIS: "Millions of Americans are thought to be suffering but not receiving appropriate clinical care. Furthermore, even now, well after the acute phase of the #COVID pandemic has passed, an estimated 30,000 Americans are newly diagnosed with #LongCOVID each year. But this is far fewer than expected, based on 2023 data. Thus, long COVID appears to have become a hidden cause of disease and disability."
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THIS: "Millions of Americans are thought to be suffering but not receiving appropriate clinical care. Furthermore, even now, well after the acute phase of the #COVID pandemic has passed, an estimated 30,000 Americans are newly diagnosed with #LongCOVID each year. But this is far fewer than expected, based on 2023 data. Thus, long COVID appears to have become a hidden cause of disease and disability."
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THIS: "Millions of Americans are thought to be suffering but not receiving appropriate clinical care. Furthermore, even now, well after the acute phase of the #COVID pandemic has passed, an estimated 30,000 Americans are newly diagnosed with #LongCOVID each year. But this is far fewer than expected, based on 2023 data. Thus, long COVID appears to have become a hidden cause of disease and disability."
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2/
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID"
“Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
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2/
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID"
“Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
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2/
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID"
“Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
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2/
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID"
“Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
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2/
"Nirmatrelvir–ritonavir for 15 days or 25 days showed no evidence of benefit in long COVID"
“Across all three phenotypes, substantial percentages of participants showed improvement over time by PROMs and less so by performance measures."
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I've been contacted by somebody I cut ties with years ago, because they went along with the end of Covid safety protocols with a cheerful vengeance. They're now asking if I know of a doctor who treats Long Covid. I have to figure out what to say.
I think it's a "teachable moment"? If I can find a way to get some info across without being a dick about it? Obviously "Well well well, look who's..." is not the correct option. No. #covid #longcOVID #covidIsNotOver