#covidlonghauler — Public Fediverse posts

Zay has a deadline by 12pm TUDAY Eastern Standard Time. Please, be a blessing.

For his shelter. #Disability #CovidLongHauler #housingcrisis

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(Contd)
RECOVER-SLEEP treating hypersomnia with "two wakefulness-promoting drugs"

RECOVER-AUTONOMIC testing POTS and high heart rate treatments.

" A fifth platform protocol, focusing on exercise intolerance and fatigue, is under development with input from the patient community and scientific experts."

#covidlong #postcovid #postcovid19 #pasc #covidlonghauler #covidlonghaulers
@longcovid

NIH launches #longCOVID clinical trials through RECOVER Initiative, opening enrollment

https://rb.gy/o6e5g

The trials are grouped as follows:

RECOVER-VITAL testing the antiviral Paxlovid

RECOVER-NEURO for brain fog with trials testing brain training, web based goal management training, and transcranial direct current stimulation.

(Contd)

@longcovid #covidlong #postcovid #postcovid19 #pasc #covidlonghauler #covidlonghaulers

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USA Government Department of Health and Human Services

"HHS Announces the Formation of the Office of #LongCOVID Research and Practice and Launch of Long COVID Clinical Trials Through the RECOVER Initiative"

https://www.hhs.gov/about/news/2023/07/31/hhs-announces-formation-office-long-covid-research-practice-launch-long-covid-clinical-trials-through-recover-initiative.html

@longcovid #postcovid #postcovid19 #pasc #covidlong #covidlonghauler #covidlonghaulers

“Issues with Expectation Bias, Absence of Data Relating to Objective Trial Outcome Measures, the Use of Low Quality Trial Design Methods and Choice of Flawed Psychological Model in ReCOVer Trial for Prolonged Fatigue Post Covid-19 Infection “

Free full text:
https://rb.gy/wyhnq

Joan Crawford highlights multiple flaws in a Dutch trial of cognitive behavioral therapy for #LongCovid

@longcovid #postcovid #postcovid19 #postcovidsyndrome #CovidLong #CovidLonghaul #COVIDlonghauler #pwlc

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“Cognitive deficits following SARS-CoV-2 infection were detectable nearly two years post infection, and largest for individuals with longer symptom durations, ongoing symptoms, and/or more severe infection. However, no such deficits were detected in individuals who reported full recovery from COVID-19.”

@longcovid #longcovid #covidbrain #PostCovid #PostCovid19 #postcovidconditon #PostCovidSyndrome #CovidLong #CovidLonghaul #COVIDlonghauler #pwlc #psc #PASC

Myopathy as a cause of #LongCovid fatigue: Evidence from quantitative and single fiber EMG and muscle histopathology

https://t.ly/klcC_

“In addition to our previously published mitochondrial changes, inflammation, and capillary injury, we show now in muscle biopsies damage of terminal nerves and motor endplate with abundant basal lamina material”

@longcovid #postcovid #postcovid19 #postcovidconditon #postcovidsequelae #postcovidsyndrome #pwlc #CovidLong #CovidLonghaul #COVIDlonghauler

Genome-wide Association Study of #LongCOVID

https://www.medrxiv.org/content/10.1101/2023.06.29.23292056v1

Note: funding has been given for 5000 people with #LongCovid in the UK who have been diagnosed with #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome to take part in another GWAS study, DecodeME https://www.decodeme.org.uk/

Sadly the number of sign-ups is low.

Please tell others 🙏

#PwLC #PostCovid @longcovid @mecfs #mecfs #PostCovid19 #pwme #cfs #COVIDlonghauler

“Neuropsychological deficits in patients with persistent COVID-19 symptoms: a systematic review and meta-analysis”

Free full text:
https://www.nature.com/articles/s41598-023-37420-6

“The results showed that individuals who had recovered from COVID-19 showed significant cognitive deficits compared to controls.”

@longcovid #longcovid #pwlc #postcovid #postcovid19 #covidbrain #COVIDlonghauler #Covidlonghaulers

“Recovery and symptom trajectories up to two years after SARS-CoV-2 infection: population based, longitudinal cohort study”

https://www.bmj.com/content/381/bmj-2022-074425

“Up to 18% of individuals who were not vaccinated before infection had post-covid-19 condition up to two years after infection”

Interesting #LongCovid study from Switzerland

@longcovid #PostCovid #postCOVID19 #pwLC #postcovidsequelae #CovidLong #COVIDlonghauler

From New Zealand:

“This support tool is a series of videos with downloadable information for everyone who has, or thinks they might have, #LongCovid. It will also be useful for people who have other post viral illnesses like ME/#CFS.”

I haven’t vetted but the fact an ME charity created it gives me some confidence.

https://www.mesupport.org.nz/longcovidhelp

@longcovid @mecfs @cfs #PostCovid #PostCovid19 #CovidLong #COVIDlonghauler
#postcovidsyndrome #pvfs

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“Clinicians may consider using a symptom-management approach called activity management, which has been shown to be helpful for people with ME/#CFS. Also known as pacing, this activity management approach enables a patient to find their individual limits for physical and mental activity to mitigate symptom flare-ups.[5]”

@longcovid #LongCovid #mecfs #pwme #CovidLong #COVIDlonghauler

(USA) “Former GOP Senator James Inhofe retired because of #LongCovid symptoms. Other colleagues have it but keep it secret, he said.”

https://www.businessinsider.com/republican-senator-opposed-covid-aid-retired-due-long-covid-2023-2

@longcovid #PostCovid #PostCovid19 #CovidLong #COVIDlonghauler

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“Lucinda Bateman…has been treating and researching [#MyalgicEncephalomyelitis] for more than three decades. “I can tell you from our close assessments that many people with #LongCovid become severe enough and chronic enough to meet these criteria [for ME/#CFS],” she says. ‘So I would consider them SARS-CoV-2 induced ME/CFS.’”

@mecfs #ChronicFatigueSyndrome #PostCovid #PostCovid19 #PwME #PwMEs #meeps #postviral #PostViralIllness #CovidLong #COVID_19 #covid #COVID19 #COVIDlonghauler

In a moment of vulnerability, I would like to share some personal thoughts on the usage of CWs as it pertains to #chronicillness . I haven’t yet shared anything about my experience with being a #COVIDlonghauler for almost 3yrs. I started to compose a summary here but found myself struggling to do so, for many reasons.

I’ll start off by saying that I completely respect the desire to curate a feed of specific content, or wanting to avoid certain topics that trigger you. But I’m conflicted by the idea of putting a content warning on my experience because it reenforces some really negative aspects of being a disabled person w/chronic illnesses. Simply put: social invisibility.

I have struggled with living in a part of the country that has a significant amount of people who do not believe #COVID exists (let alone acknowledge it can cause irreparable damage). So I’ve been told to “just stay home” for 3yrs. Along with things like being accosted or mocked for wearing a mask. Hell, it took 2yrs for our small town medical community to even start to acknowledging a need for Long Haul support and treatment. I’ve spent the last 33 months feeling dismissed and invisible.

Censoring my experience feels like reinforcing societies need to turn away from the inconvenience of suffering. It feels like abandoning my own advocacy, and I don’t know how to reconcile that. In the end I will likely prioritized the comfort of others over my own discomfort because I see the merit in CWs, but I welcome feedback on topic from others.

Yup... I was left to die. I still haven't received any help or treatment. Fuck all of you who acted like I'm invisible. You're about to find out what it feels like. 🖕#longcovid #covidlonghauler #chronicillness #longhauler #longhaulcovid #disabilityawareness
https://www.tiktok.com/t/ZTRxvUUH1/

#introduction

Hello! Oddball Xennial here.
#Photographer and #MixedMedia #Artist in the US. I have been a solitary #eclectic practitioner for 20+yrs. Lover and collector of #occult history. I am a companion to 3 feline friends and a stellar partner. My social interests include #environmentalism #conservation #publichealth and #humanrights I love Mexican food, used book stores, collecting art, #xfiles and road-trips. 31 months into an unfortunate journey of being a #COVIDlonghauler

Other personal interests: #collage #painting #poetry #assemblage #indigenoushistory #gardening #herbalism #folkart #oddities #cats #guerillaart #guerillagardening #humanist #arthistory #BlackRockCity #Pagan #community