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Tom Kindlon · @tomkindlon
689 followers · 1634 posts · Server disabled.social

2/

(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."


@longcovid

#CovidLong #PostCovid #PostCovid19 #PASC #COVIDlonghauler #covidlonghaulers

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
689 followers · 1633 posts · Server disabled.social

NIH launches clinical trials through RECOVER Initiative, opening enrollment

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

1/

#LongCovid #CovidLong #PostCovid #PostCovid19 #PASC #COVIDlonghauler #covidlonghaulers

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
689 followers · 1633 posts · Server disabled.social
HHS.gov - HHS Announces the Formation of the Office of Long COVID Research and Practice and Launch of Long COVID Clinical Trials Through the RECOVER Initiative

USA Government Department of Health and Human Services

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

hhs.gov/about/news/2023/07/31/

@longcovid

#LongCovid #PostCovid #PostCovid19 #PASC #CovidLong #COVIDlonghauler #covidlonghaulers

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
660 followers · 1489 posts · Server disabled.social
OUP Academic - 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

“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:
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

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
659 followers · 1481 posts · Server disabled.social

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

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

#LongCovid #PostCovid #PostCovid19 #postcovidconditon #postcovidsequelae #postcovidsyndrome #pwlc #CovidLong #covidlonghaul #COVIDlonghauler

Last updated 1 year ago
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Fighting Eviction‼️😰😭 · @Hare
239 followers · 3082 posts · Server kolektiva.social

Having a rough health week.

Or longer?

The worse the health struggles and amount of symptoms, the easier it is to lose time.

I know many of y'all can relate. 😓

#NEISvoid #spoonie #eds #scolisis #cfs #ibs #IH #hypersomnia #IdiopathicHypersomnia #cptsd #trauma #Migraine #chronicpain #LongCovid #COVIDlonghauler

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
605 followers · 1287 posts · Server disabled.social

Genome-wide Association Study of

medrxiv.org/content/10.1101/20

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

Sadly the number of sign-ups is low.

Please tell others 🙏

@longcovid @mecfs

#LongCovid #MyalgicEncephalomyelitis #pwlc #PostCovid #mecfs #PostCovid19 #pwme #cfs #COVIDlonghauler

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
601 followers · 1273 posts · Server disabled.social

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

Free full text:
nature.com/articles/s41598-023

“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

Last updated 1 year ago
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Urgent Help Needed! 105/700 · @Hare
196 followers · 2505 posts · Server kolektiva.social

Fibro flare/fatigue has gotten to the point of feeling feverish.

Only thing that can break this cycle is sleep, but that doesn’t seem likely anytime soon with how far we still are from being able to pay for shelter. 😰

#NEISvoid #fibro #painflare #cfs #LongCovid #COVIDlonghauler

Last updated 1 year ago
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Irish ME/CFS Association · @IrishMECFSAssociation
146 followers · 1055 posts · Server mastodon.ie
Open media

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

bmj.com/content/381/bmj-2022-0

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

Interesting study from Switzerland

@longcovid

#LongCovid #PostCovid #postCOVID19 #pwLC #postcovidsequelae #CovidLong #COVIDlonghauler

Last updated 1 year ago
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Struggling - Pls stand by 😰 · @Hare
197 followers · 2473 posts · Server kolektiva.social

I absolutely hate "living" like this, but I am proud that my family is still alive.

Just wish it was more than just barely surviving, I don't know how much longer we can handle this. 😓

#chronicallyunhoused #EscapingAbuse #cptsd #CultSurvivors #DIDOSDD #LongCovid #COVIDlonghauler #cfs #fibro #seizures #autisticburnout

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
551 followers · 832 posts · Server disabled.social

From New Zealand:

“This support tool is a series of videos with downloadable information for everyone who has, or thinks they might have, . 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.

mesupport.org.nz/longcovidhelp

@longcovid @mecfs @cfs

#LongCovid #PostCovid #PostCovid19 #CovidLong #COVIDlonghauler #postcovidsyndrome #pvfs

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
535 followers · 726 posts · Server disabled.social

5/

“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

Last updated 1 year ago
Original post

$1050 Urgently Needed‼️ 0/1050 · @Hare
135 followers · 1168 posts · Server kolektiva.social
Ko-fi - Cats, Chaos, and Crowdfunding‼️

#donate #help #request #MutualAid #crowdfund #crowdfunding #cats #petcare #kofi #transcrowdfund #evictionrisk #eviction #poverty #actuallyautistic #pluralgang #COVIDlonghauler #LongCovid

Last updated 1 year ago
Original post

$405 From Eviction‼️ 195/600 · @Hare
130 followers · 1115 posts · Server kolektiva.social
Open media

Right now I'm in autistic burnout on top of long covid, and it was reverse for my partner, poor thing.

My point is, I used to be a lot more fun and interesting, and I deeply hope to get some of that passion back someday.

We have barely been surviving for so long, we're both/all (we're both plural/have DID) SO very deeply exhausted, and we have lost all of our shine. 😟

#unhoused #homelessness #autism #actuallyautistic #burnout #autisticburnout #cptsd #COVIDlonghauler #cfs #LongCovid

Last updated 1 year ago
Original post

$405 From Eviction‼️ 195/600 · @Hare
130 followers · 1115 posts · Server kolektiva.social

Right now I'm in autistic burnout on top of long covid, and it was reverse for my partner, poor thing.

My point is, I used to be a lot more fun and interesting, and I deeply hope to get some of that passion back.

We have barely been surviving for so long, we're both/all (we're both plural/have DID) SO very deeply exhausted, and we have lost all of our shine. 😟

#unhoused #homelessness #autism #actuallyautistic #burnout #autisticburnout #cptsd #COVIDlonghauler #cfs #LongCovid

Last updated 1 year ago
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$460 Needed Today 😰#Eviction · @Hare
112 followers · 793 posts · Server kolektiva.social

I wanna live long enough to be housed with Ravyn & the kitties. 😰

I'm so scared being sick right now on top of my default chronic everything.

Idk if it's a cold, or covid, and I don't have access to medical care, and omg I don't want to die. 😭

#LongCovid #COVIDlonghauler #spoonie #fibro #asthma #cfs #Bedbound #unhoused #sick #ill

Last updated 1 year ago
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$570 Needed by March 1st 😰 · @Hare
111 followers · 768 posts · Server kolektiva.social

Being sick with whatever this is on top of years of long covid after a lifetime of already being chronically ill...

We are SO sick right now.

#LongCovid #COVIDlonghauler #fibro #asthma #cfs #sick #chronicallyill #spoonie #did

Last updated 1 year ago
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Hare is Safe! 😭💗✨ · @Hare
111 followers · 734 posts · Server kolektiva.social

Oh great, I'm sick.

Things have been so chaotic and busy lately, and being chronically ill our entire life, I didn't think much of having a bit of a sore throat the last few days (I know, I Know) because it's been rainy and windy and our body always acts up with weather changes.

But I finally looked at my tonsils a bit ago, and oh my Gawd 😫

Idk what to do, I don't have the time or money to be sicker than I already am 😭

#chronicallyill #autistic #did #LongCovid #COVIDlonghauler #disabled #fibro #asthma #unhoused

Last updated 1 year ago
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Tom Kindlon · @tomkindlon
532 followers · 694 posts · Server disabled.social

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

businessinsider.com/republican

@longcovid

#LongCovid #PostCovid #PostCovid19 #CovidLong #COVIDlonghauler

Last updated 1 year ago
Original post