A new way of thinking about persistent infections, such as long COVID and chronic Lyme disease

“Infection-associated chronic illness” sounds like a mouthful.

But using that name has sparked a paradigm shift in how researchers and others view ailments that can keep people sick for years—with few or no options for getting better.

READ MORE: https://www.lymedisease.org/new-way-of-thinking-long-haul/
#longcovid #longlyme #chronicillness #chronicfatigue #chronicdisease #mecfs #ms #pots #dysautonomia

This is what hope looks like ♥️ h/t @microbeminded2 and all the teams involved

#pwME #pwLC #LongCOVID #LongLyme #SARSCoV2
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RT @polybioRF
PolyBio is excited to be leading the LongCovid Research Consortium (LCRC): a global scientific collaboration to rapidly & comprehensively study #LongCovid disease mechanisms, with a focus on SARS-CoV-2 reservoir (https://polybio.org/longcovid). LCRC projects we are supporting include:
https://twitter.com/polybioRF/status/1645800172084158469

Tired of the infighting.
It is *NOT* a productive use of our collective limited energy and spoons.

We will either rise together by demanding and inspiring revolutionary change or be left for dead as a lot.

Listen to disabled people. Please. #pwME #pwLC #longCOVID #longLyme
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RT @ErinSandersNP
@IppokratisAnge1 So ME/CFS is an umbrella that you may fall under if you have long COVID, but you may not. And either is ok. Because we a…
https://twitter.com/ErinSandersNP/status/1574971761841827840

2/

It looks like this study may still recruiting people from the US

https://snyderlabs.stanford.edu/crashcourse/

Researchers are recruiting ME/CFS, #ChronicLyme and #LongCovid patients for a study to better understand symptom flares such as post-exertional malaise (PEM), or “crashes”.

@longcovid #ptlds #longlyme #myalgicencephalomyelitis #ChronicFatigueSyndrome #mecfs #cfs #pwme

RT @VirusesImmunity
@cstroeckw Many thanks to you and other patient advocates, this pandemic has propelled me to investigate the pathobiology of #longCOVID, #MECFS and #longLyme 🙏🏼 If enough people do the same, we can change how society and medicine view post-acute infection syndromes.

RT @VirusesImmunity@twitter.com

@cstroeckw@twitter.com Many thanks to you and other patient advocates, this pandemic has propelled me to investigate the pathobiology of #longCOVID, #MECFS and #longLyme 🙏🏼 If enough people do the same, we can change how society and medicine view post-acute infection syndromes.

🐦🔗: https://twitter.com/VirusesImmunity/status/1599201267821477889

#TopHits 2022
#7
Do long COVID and long Lyme both activate mast cells? #longCOVID #longLyme #MCAS https://www.lymedisease.org/lyme-covid-mast-cell-activation/?fbclid=IwAR2Ml3RXDu4UjXVFtd3U3VIZyFxlCDmvdEmlN1TWClMHGc7YoEdpJvf5k0Y

RT @polybioRF@twitter.com

4/ Our long-term vision is to iterate our collaborative infrastructure and cutting-edge technologies towards the study of persistent viral and bacterial #pathogen activity in related conditions. These include #ME/CFS, #LongLyme, MS, and Alzheimer’s disease

🐦🔗: https://twitter.com/polybioRF/status/1602712337928097793

RT @WesElyMD@twitter.com

22/fin
Are we having fun yet?
 
Are you annoyed when you hear others #poopoo this public health nightmare?

I am‼️
 
Science, caring, validation & community are needed for #LongCOVID #MECFS #LongLyme #Fibromyalgia
 
Long COVID pts, please don’t lose hope. We’re finding answers…

🐦🔗: https://twitter.com/WesElyMD/status/1600470792461963264

RT @WesElyMD@twitter.com

22/fin
Are we having fun yet?
 
Are you annoyed when you hear others #poopoo this public health nightmare?

I am‼️
 
Science, caring, validation & community are needed for #LongCOVID #MECFS #LongLyme #Fibromyalgia
 
Long COVID pts, please don’t lose hope. We’re finding answers…

🐦🔗: https://twitter.com/WesElyMD/status/1600470792461963264

RT @WesElyMD@twitter.com

22/fin
Are we having fun yet?
 
Are you annoyed when you hear others #poopoo this public health nightmare?

I am‼️
 
Science, caring, validation & community are needed for #LongCOVID #MECFS #LongLyme #Fibromyalgia
 
Long COVID pts, please don’t lose hope. We’re finding answers…

🐦🔗: https://twitter.com/WesElyMD/status/1600470792461963264

RT @WesElyMD@twitter.com

22/fin
Are we having fun yet?
 
Are you annoyed when you hear others #poopoo this public health nightmare?

I am‼️
 
Science, caring, validation & community are needed for #LongCOVID #MECFS #LongLyme #Fibromyalgia
 
Long COVID pts, please don’t lose hope. We’re finding answers…

RT @VirusesImmunity@twitter.com

@cstroeckw@twitter.com Many thanks to you and other patient advocates, this pandemic has propelled me to investigate the pathobiology of #longCOVID, #MECFS and #longLyme 🙏🏼 If enough people do the same, we can change how society and medicine view post-acute infection syndromes.

🐦🔗: https://twitter.com/VirusesImmunity/status/1599201267821477889

RT @VirusesImmunity
@cstroeckw Many thanks to you and other patient advocates, this pandemic has propelled me to investigate the pathobiology of #longCOVID, #MECFS and #longLyme 🙏🏼 If enough people do the same, we can change how society and medicine view post-acute infection syndromes.

We need “Forgotten Diseases” Clinics -

Seriously I’ve been thinking about the massive Venn-diagram overlap of this group of diseases that have such an ill characterized set of definitions, diagnostic testing, therapeutic trials.

Patients tell us…
📍“We feel left behind by,” say 1,000s of Long COVID pts
📍Sadly, #MECFS, #LongLyme, fibromyalgia & #PICS patients tell us they hoped to “ride the coattails” of #LongCOVID
📍People say, “Get on w your life.”

They say, “What life?”