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Hashtag
#LongCovid
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who live with #LongCOVID, chronic #lyme/tick-borne illness, #MECFS and other infection-associated chronic conditions and illnesses, as well as their caregivers, families and friends know this dark place. This is also why clinicians and researchers who are legitimately trying
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“(Contd) There is a particular cruelty in being too sick from a disease to advocate for awareness of that disease on the day set aside for exactly that purpose”
#mecfs #longcovid
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“I was in bed. Screens were making my symptoms worse. Staying upright was not possible. The writing I would have done, the posts I would have shared, the community I would have engaged, all of it was behind a wall I could not climb over. (contd)”
#mecfs #longcovid #pwme #cfs
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Zu Ostern ein buntes Suchspiel
für alle ME/CFS-Betroffenen
und Betroffene ähnlich ignorierter, stigmatisierter, gegaslighteter, invalidierter Erkrankungen
- und das sind viele!
Hatte es ´24 auf X gepostet.
Hat nichts an Aktualität verloren - leider
#MEcfs #MEkills #LearnAboutME #PAIS #LongCovid
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1.52 The clinical community’s reliance on these assumptions and the associated emphasis on cut-off points was flawed.89 The Inquiry acknowledges that this was a widespread failure and that there was a general belief within clinical spheres at the outset of the pandemic that droplets were the most likely source of Covid-19 transmission. However, it was a clear failure by the public health bodies of the four nations and the UK IPC Cell not to account for the fact that the assumptions made may have been wrong.
The fact that one might be able to come up with an explanation of the data consistent with prior assumptions does not mean it is safe to add another layer of assumption. That's where the pandemic response went off the rails from day 1. Same thing with denial of #longCOVID, that it affects kids, etc.
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“When Long COVID took hold, I didn’t want to stop. I tried everything reasonable: accommodation requests, modified schedules, reduced hours. (contd)”
#longcovid #postcovid
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Tulpenstrauß mit Osterhase und Osterei
Frohe Ostern 🐣
Für viele mit #MECFS #LongCovid #PostVac #PAIS ist ein gemeinsames Osterfest keine Selbstverständlichkeit.
Umso mehr wünsche ich allen #pwME ein symptomarmes, erträgliches Fest mit etwas Teilhabe 💛
#millionsmissing #learnaboutme #chronicalillness
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With Suzanne O’Sullivan claiming a ‘large proportion’ of #LongCOVID is psychosomatic on the Amol Rajan podcast, I’m resharing this clip from 2021 of Dr Xand van Tulleken on BBC Morning Live
“You can always find some doctor, some professor to give a quote to a paper saying it’s all psychosomatic…”
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Zur besseren Lesbarkeit 📚
skywriter.blue/@utesp.euros...
#Science
#MedSky
#MECFS
#LongCovid
#MedizinNews
#Gesundheitspolitik
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😷 #tdgr damit wir an Prävention denken und uns wirklich als antifaschistisch erweisen.
Wir dürfen keine Menschen ausgrenzen!
Jeder kann vulnerabel sein.
#MECFS #LongCovid
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I also now avoid the daily Muscle Aches and Muscle Weakness by RESTING for around 20 hours each day and lying down or putting up my feet as much as possible; also keeping my elbows close to my body.
#Pacing to avoid #PEM is a full-time job. I have become a part-time teacher.
#LongCovid
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No fatigue on 3 evenings. Fatigue most days. Severe around 14 days over the January to April period 2024
And I spend so much of my time and energy #Pacing to avoid the debilitating FATIGUE, making me feel like I'm being POISONED.
I don't experience the fatigue any more. This was my self-reported #LongCovid Fatigue every evening between January and April 2024 😌
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2024 graph shows muscle weakness on all bur 8 days. Severe around 18 days.
2025 graph shows moderate weakness on one occasion and light weakness another day.
One day of the 2026 time period had light muscle weakness
Look how my daily Muscle Weakness reporting changed (noted each evening for over 3 years now):
January to April 2024, compared with Jan-April 2025 and Jan-April 2026 👇
I have mostly managed to avoid the debilitating 'heavy' arms and legs associated with my #LongCovid #PEM for almost 2 years now.
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COVID schädigt Mitochondrien und damit die Energiebereitstellung
#MECFS #LongCovid #Mitochondriopathie
Alt-Text: Bild von Mitochondrium
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A quote from my piece, The Debt Came Due, about the current #PEM crash I’m navigating.
“I find purpose in helping others. It is the through-line of my entire professional life, from child protective work to retail management.”
#LongCOVID #MECFS #PwME
substack.com/home/post/p-...
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🎬Strangely Optimistic for #EDFC2026 Easterseals Disability Film Challenge! Based on a true, heartbreakingly ridiculous #LongCOVID story. Written/Directed by Nina Storey, edited by @msjulieslam.bsky.social, this is our "push" to make the invisible visible.
WATCH/LIKE www.youtube.com/watch?v=aaVm... 🧵
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‘Vigilance over alarm’. Because we would hate to be accurately informed about a still-lethal novel virus that crosses the blood-brain barrier causing permanent and incurable long-term illness. Does ‘airborne AIDS’ carry more punch? Asking for 8.3B friends.
#LongCovid
#MaskUp
#Vaccinate
#CleanAir
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“(Contd) My world has compressed to the dimensions of a single level of a house, & within that level, primarily to the bed”.
* equivalent to “the ground floor” in UK/Ireland/probably some other countries
#mecfs #longcovid #pwme
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“I’ve moved to the 1st floor*. The upstairs where I used to sleep, where I used to have a life that spread itself across multiple rooms, is now effectively another country. I don’t go there. The energy cost of stairs is a luxury I cannot afford. (contd)
#mecfs #longcovid #pwme
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#Covid worsened overnight.
Woke whole chest inflamed. Bit better now.
Fever again.
3 weeks & still sick w random symptoms getting worse suddenly.
I can’t get better if I’m living on a snack here & there can it?
Reality of #abuse
They refuse to mask even though dr begged them
Must escape!
#LongCovid
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Emerge Australia “Happy Easter” graphic featuring a rabbit sitting in sunlit grass beside a small nest with pastel Easter eggs, with the Emerge Australia logo at the top left.
For our #mecfs and #longCOVID community, holidays can feel different, and that’s okay. This Easter, honour your energy.
💙 Pacing is participation
🌸 Redefine celebration
🕊️ Listen to your body
✨ Further info zurl.co/dtaxR
Today is about what feels right for you.
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“(Contd) I have a bathroom that close and my doctor was genuinely concerned about the exertion cost of reaching it. That is where I am.”
#pwme #pem #longcovid #mecfs
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“Three months off, at minimum. Move to the first floor. Minimize every exertion. She mentioned a potty chair. Let that land for a moment. A potty chair, so I don’t have to walk the ten feet to the bathroom. (contd)”
#mecfs #longcovid #pem #pwme
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In Kreis Kleve, we, a group of parents, are connected by the sheer force of our children having #LongCovid. I have never met Rosa, but the window to her #MECFS and #MCAS prison is imprinted in my brain. Taped off. Dark. Burried.
Here is here story (in German) & that of Kathi.
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I'd also like to talk abt the fact roughly 300 are STILL DYING OF COVID EACH WEEK IN THE USA, which is likely an undercount
& scores more who suffer lasting impairment, disability, & loss of work, home, quality of life due to long covid
Millions missing
#MillionsMissing
#LongCovid
#CovidIsNotOver
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Moreover, akin to other debilitating conditions it often co-occurs with, e.g., Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and dysautonomia, Long COVID disproportionately impacts females whose concerns are often marginalized.
#LongCOVID #DisabilityBurden #ME/CFS
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“(Contd) Thinking is exhausting. Being upright is exhausting. I lie flat and stare at the ceiling, which has become a kind of companion these past weeks”
#PostExertionalMalaise #MEcfs #LongCovid
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“Now I cannot stay upright. The fatigue is a physical weight, not a feeling of sleepiness but something more like gravity has been turned up and my body is the only thing that hasn’t gotten the memo. Screens worsen my symptoms. Sound is exhausting. (contd)”
#mecfs #LongCovid #pwme #cfs #postcovid
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Was (noch) nicht dabei ist:
Low-Dose-Naltrexon (LDN) ist nicht Teil des aktuellen Beschlusses zur Off-Label-Erstattung bei Long-COVID. Studienergebnisse werden noch 2026 erwartet. Die Aufnahme in die Erstattungsfähigkeit bleibt offen.
#LongCOVID #LowDoseNaltrexon #LDN #OffLabelUse
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