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#pasc

2 posts2 participants0 posts today

(Australia-wide survey)
Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or #LongCovid ?

"The Australian e-Health Research Centre at CSIRO ... is conducting a survey to understand the research priorities of the community"

Link:
csiro.qualtrics.com/jfe/form/S

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@auscovid19 #auscovid19

1/

Long Covid Bullshit Bingo

When I saw the paper "Language Matters: What Not to Say to Patients with Long COVID, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and Other Complex Chronic Disorders" doi.org/10.3390/ijerph22020275 I immediately wanted to make a Bullshit Bingo out of it.

Get your own Bingo Card: buzzword-bingo.github.io/#Long

And the advanced version with all the options individually: buzzword-bingo.github.io/#Long

@longcovid

#LongCovid #PostCovid #PASC#MECFS #ME #CFS #ChronicIllnessMemes

Sympathetic article; quotes 3 German experts

"Years after the pandemic, has the threat of #LongCovid subsided?"

yahoo.com/news/years-pandemic-

Includes this "Depending on the symptoms, doctors will often recommend exercise therapy ..." but then that can be true for people without PEM

@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID19 #COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver

1/

Given all talk re: Post Exertional Malaise/Post Exertional Symptom Exacerbation in #LongCovid:

Here is "Symptoms made worse due to physical or cognitive exertion" in #MyalgicEncephalomyelitis & #ChronicFatigueSyndrome

Also shows all the range of ME/#CFS
symptoms

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

1/

"shows in people with T2D, poorer glycemic control with HbA1c≥8% increases the risk of developing #LongCOVID after #COVID19 infection, specifically with respiratory symptoms & brain fog"

drc.bmj.com/content/13/1/e0045

Screenshot from Science for ME weekly update

Hashtags:
@longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@covid19 #Coronavirus
#COVID #SARSCoV2 @novid@chirp.social #novid @novid@a.gup.pe #CovidIsNotOver
@auscovid19 #auscovid19

"There are over 200 different symptoms that can appear in any different combination. And then the other piece about it is there are about six different mechanisms of what can be causing long COVID. So everyone has in common COVID as the thing that started their long COVID.

However, there are so many different physiological things going wrong in different people with long COVID, they might require different treatments."

"There are actually a lot of great trials going on [...] one looking at mitochondrial dysfunction is Rapamycin, which David Petrino’s group is running."

"There’s a few looking at immunomodulation with JAK inhibitors, both the Baricitinib trial by Wes Eli’s group and another JAK inhibitor trial that’s starting at Harvard. Another immunomodulation option is IVIG, which is being run by the NIH RECOVER consortium. This one’s tricky because it’s not super scalable. You have to get the antibodies from people and then infuse them into other people"

"And then the other mechanism that’s being looked at a lot now is viral persistence, both through a few different monoclonal antibodies trials– Michael Peluso’s, funded by the Patient Led Research Collaborative. Nancy Klimas is just starting one funded by the Schmidt Initiative for Long COVID and the state of California. And then there’s another one in Italy that’s funded by industry, all looking at monoclonal antibodies. And then the last viral persistence one is also being run by the Petrino group on Truvada, which is an HIV antiviral."

sciencefriday.com/segments/pax

@patientled

Science Friday · Can Paxlovid Relieve Long COVID Symptoms? For Some, YesBy Emma Gometz