🎥 #Documentary #ChronicallyIgnored
Only a few days left until June 20th. I would be very grateful for sharing, so that as many people as possible can be reached! Thank you so much for your support!
A Wake-Up Call To Politics, Medicine & Research
#POTS #SmallFiber #SIBO #Autoimmunity #MCAS #FQAD #FQToxicity #FlagylToxicity #EDS #hEDS #Marfan #CCI #LongCovid #LongLyme #VacInjury #LongList #LongTragedy
Film Link here:
🎥https://vimeo.com/ondemand/chronicallyignored
Sliding further down into PEM today 🫨
P.s. If you're on Instagram, I recommend me_in_a_comic (fennine) who makes great cartoons showing chronic illness life.
When a picture says more than a thousand words...
#LongCovid #pwME #longlyme #QVS #SEID
@RoosVonk het kortzichtige van politiek en dat dat niet in context gezet wordt door journalisten vind ik steeds frustrerender (enkele uitzondering). We mogen god op onze blote knietjes danken voor circa €40mln voor 2(!)jaar... voor honderdduizenden zieken met een genegeerd ziektebeeld (qkoorts en MEcvs schandaal).
Aanrader; Podcast NietHersteld heeft er 3 afleveringen over, nr 2,7,8
#HetKonNooit #HouHoop #LongCovid #qkoorts #mecvs #longLyme
https://open.spotify.com/episode/4wvYh6LNVP4JE041lLDckF?si=AEyWrmhDRFOrYy4qw6iPRA
From the Massachusetts #MECFS & FM Association e-newsletter:
(#Boston, #Massachusetts)
MIT MAESTRO study of Long Covid and Post Lyme Recruiting Participants including healthy controls
Links in image
https://talresearchgroup.mit.edu/mitmaestro
https://intake.mit.edu/surveys/?s=WLPFP8M9YD73WXY9
3/fin
This study by @maayanLevy_lab is a marvel of dozens of avenues of science that all point to a greater understanding of the realities of #LongCOVID as a chronic disease state.
Through work like this, we legitimize not only LC, but also #MECFS #LongLyme etc & take one step closer to finding medical solutions for past & future post-infectious states + syndromes like #PICS
bit.ly/3Fjx3Jp
The PolyBio Fall 2023 Symposium is scheduled for October 20, 1 to 5 pm, EST
A speaker list, with links to their projects, has been posted on the Science for ME forum:
https://www.s4me.info/threads/polybio-fall-2023-symposium.35177/
PolyBio is "a 501(c)3 transforming how infection-associated chronic conditions like LongCovid, ME/CFS & Long Lyme Disease are studied, diagnosed and treated"
Description from their website -
https://polybio.org/
#LongCovid #PASC #MEcfs #LongLyme #ChronicIllness
#MedMastodon
Yale School of Medicine Post-Acute Infection Syndromes Will Be the Focus of New YSM Center
On the newly launched Center for Infection & Immunity (CII) at Yale created by Akiko Iwasaki, PhD, which will investigate ME together with #LongCOVID and #posttreatmentLymedisease
@mecfs #MEcfs #CFS #MyalgicE #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @longcovid
#LongCovid #PwLC #PostCovidSyndrome #LC #postcovid #longlyme #lyme
1/
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
@WesElyMD Thank you!
Yes, we do! Both for patients to attend for care and clinics for doctors to be brought up to speed.
I'm a #pwME also dx w/ #fibromyalgia #POTS #LongLyme etc etc
Like thousands of my fellow patients I have no doc familiar with these. I have to guide my own care and hope my PCP agrees - while 90% bedbound and thru brain fog.
Somebody needs to send the International Consensus Criteria for #MECFS practitioner primer to every PCP in the US.
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?”
