#fblc — Public Fediverse posts

Does anyone remember Follow Back Long Covid? #FBLC It is something the 2020-2021 longhaulers used to do. I am trying to make a list accessible to everyone to rebuild the community, and probably a starter pack afterwards. Please leave a message underneath if you want to be included.

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

@everyone

Have you found a COVID-Competent provider?

Help others find local medical providers who won’t waste their time or spoons and are familiar w/ #longcovid and it’s associated conditions! Add a provider to the list! https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

Check out the current list: https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/htmlview

#longhauler #fblc #longcovidawareness #medtwitter

Airing on @BBC1 at 2000 GMT today. Featuring HCWs afflicted by #LongCovid. #FBLC #covid #nhs #keyworker

There's not much to love about #LongCovid but I'd love to have it go away. My #Christmas homage to the movie #loveactually #pwLC #teamclots #CovidIsNotOver #fblc @longcovidsos

The Autoimmune Registry has determined that biomarkers of immune system activity similar to those seen in many autoimmune and autoinflammatory diseases justify the inclusion of Long COVID on its list of diseases.

https://www.autoimmuneregistry.org/long-covid-announcement

#FBLC
#LongCovid #LongCovidKids

Ableism & the weaponisation of dead children: (Don’t mention that C word, or the proven persistent nature of it in all organs & blood vessels). #SARScov2 #COVID19 #StrepA #Ableism #GBD #UsForThem #propaganda #PublicHealth #fbLC https://open.substack.com/pub/counterdisinformationproject/p/strep-a-in-the-uk-a-mess-of-public?r=1dbmdq&utm_campaign=post&utm_medium=email

I just slept my first night with my #CPAP machine & it felt amazing, comfy & i feel noticeably better this morning. If you experience poor sleep, night sweats, gasping for air, feel like you forget to breathe, get evaluated for #SleepApnea! There's a link between long COVID and OSA that's not yet understood.

#LongCovid @longcovid @mecfs #FBLC #pwme #pwlc #CovidIsNotOver

Link below for article I was interviewed for -- covers the awful experiences majority of #LongCovid patients have at clinics across US. Systemic issues mean that we don't receive adequate care, continue to suffer, are missing from our lives, & have no treatments. We manage pain, we reduce our lives, and we wait....

Still waiting!

And #MECFS patients have been waiting lifetimes.

Article is good & comprehensive, please share!

https://www.popsci.com/health/long-covid-care-chronic-illness

#pwme #fblc #CovidIsNotOver

My latest #longcovid #blog post. That term we all hate-- Brain Fog. My hot take on the cognitive issues related to Long Covid including my very personal experiences. http://www.seekingbostonmarathon.com/2022/11/long-covid-brain-fog-is-not-fog-its.html?m=1 #pwLC #fblc #NotRecovered #teamclots

Hey long COVID & ME / post infectious folks - have you been diagnosed with obstructive sleep apnea? If yes, are you using a CPAP machine? If so, has it helped?

context : i am 2 years into long COVID / ME, just got diagnosed via a home sleep study, trying to decide if using a machine will help me abd figure out what to do as PCP is not very helpful and my access to specialist is limited

#mecfs #LongCovid #LongHaulers #pwme #pwlc #fblc #NEISvoid #PostViral #OSA #SleepApnea #CPAP

Outstanding letter to the editor by Jennie Spotila on the inaccuracies, bias, and misleading content in @nymag about #LongCovid #mecfs #pwme #FBLC #physiologicalnotpsychological

http://occupyme.net/2022/11/22/new-york-magazine-article-biased-and-riddled-with-errors/

#MentalHealthDay
Mental health is vital to wellbeing and interacts with physiology.
A lot of work has been done to rightly destigmatize Mental Health & make it accessible. So much more is needed.

What shocks me is how #mentalhealth continues to be weaponized by parts of the medical est. against patients w complex #chronicillness
Pw CI need MH support like anyone w illness. It’s twisted to blame it for under researched illnesses.

#LongCovid #mecfs #pots #eds #mcas #lyme #pwme #FBLC

@jamesglen @Nova_Scotia_Nadine thanks James! I’m starting to get the hang of it. It’s a bit tedious, I wish we could see who people follow. that used to be how I found people I wanted to follow. Thank goodness for hashtags #FBLC #LongCovid #mecfs #pwme #pwLC

ABCNewsLive did a phenomenal 11 minute piece on #LongCovid featuring the COVID-19 Longhauler Advocacy Project's very own Dir of Education, Netia McCray, and Founder, Karyn Bishof! They discuss life before the pandemic and how dramatically it's changed living with #LongCovid. 1/2
https://youtu.be/lGGtXpSpiJY

#FBLC #longhauler #COVID #PASC #LongCovidAdvocacy #longcovidawareness #longcovidresearch #longcovidsupport #longcovideducation #longcovidrecovery #longcovidassociatedconditions #LC #LCAC

ABCNewsLive did a phenomenal 11 minute piece on #LongCovid featuring the COVID-19 Longhauler Advocacy Project's very own Dir of Education, Netia McCray, and Founder, Karyn Bishof! They discuss life before the pandemic and how dramatically it's changed living with #LongCovid. 1/2
https://youtu.be/lGGtXpSpiJY

#FBLC #longhauler #COVID #PASC #LongCovidAdvocacy #longcovidawareness #longcovidresearch #longcovidsupport #longcovideducation #longcovidrecovery #longcovidassociatedconditions #LC #LCAC

ABCNewsLive did a phenomenal 11 minute piece on #LongCovid featuring the COVID-19 Longhauler Advocacy Project's very own Dir of Education, Netia McCray, and Founder, Karyn Bishof! They discuss life before the pandemic and how dramatically it's changed living with #LongCovid. 1/2
https://youtu.be/lGGtXpSpiJY

#FBLC #longhauler #COVID #PASC #LongCovidAdvocacy #longcovidawareness #longcovidresearch #longcovidsupport #longcovideducation #longcovidrecovery #longcovidassociatedconditions #LC #LCAC

ABCNewsLive did a phenomenal 11 minute piece on #LongCovid featuring the COVID-19 Longhauler Advocacy Project's very own Dir of Education, Netia McCray, and Founder, Karyn Bishof! They discuss life before the pandemic and how dramatically it's changed living with #LongCovid. 1/2
https://youtu.be/lGGtXpSpiJY

#FBLC #longhauler #COVID #PASC #LongCovidAdvocacy #longcovidawareness #longcovidresearch #longcovidsupport #longcovideducation #longcovidrecovery #longcovidassociatedconditions #LC #LCAC

ABCNewsLive did a phenomenal 11 minute piece on #LongCovid featuring the COVID-19 Longhauler Advocacy Project's very own Dir of Education, Netia McCray, and Founder, Karyn Bishof! They discuss life before the pandemic and how dramatically it's changed living with #LongCovid. 1/2
https://youtu.be/lGGtXpSpiJY

#FBLC #longhauler #COVID #PASC #LongCovidAdvocacy #longcovidawareness #longcovidresearch #longcovidsupport #longcovideducation #longcovidrecovery #longcovidassociatedconditions #LC #LCAC

#FBLC We’ve joined! Please connect with us as we learn to navigate this platform and connect with all of you as well! Tips welcome!

@ItsJustCty @Leonline @longcovid
#FBLC too!

Recommended follows for #pwLC on Mastodon:

@Long_Covid
@LongCovidKids
@LongCovidAdvoc
@longcovidsos
@longcovidpodcast

Follow the @longcovid Mastodon group.
Sign up at: https://a.gup.pe/u/longcovid

#LongCovid #FBLC

Hello #LongCovid #FBLC #pwLC

There is already a group on Mastodon called @longcovid which you can join (use the link further down) and post to by tagging (like I have done above)

You can follow the group to get all the stuff posted to the group.

Sign up via: https://a.gup.pe/u/longcovid

I've been lurking a few weeks so time for a proper #Introduction I think!

Former musician & lover of exercise & the outdoors.

Now host of the Long Covid Podcast - bringing together lived experience, medical experts, researchers & recovery stories on this lonely journey.

Listen wherever you get your podcasts or at www.LongCovidPodcast.com

#LongCovid #FBLC #MECFS #pwLC #NotRecovered

We'll be using the #LongCovid #FBLC #pwLC hashtags to help find people on here.
What methods are you using to find people?

@DDave Hello! I'm trying to use the #longcovid #fblc and #pwLC hashtags to find people on here. Has it worked for you?

@MayaL @Nova_Scotia_Nadine I'm finding people by hashtags at the moment and following that way
#LongCovid #FBLC #pwLC

I am trying to follow everyone back on #FBLC and #FBPE hashtags but I'm running in to problems! If I have missed you please let me know.

#RIPTwitter

We joined #Twitter to kick start our grassroots organisation in 2020.

Then we became a charity in 2021.

We had to learn how to use Twitter while managing #LongCovid.

We are still managing #LongCovid and can learn how to use another platform....we hope!

Please help us with your best tips, follows and what ever else one has to do here!

#LongCovid #FBLC #LongCovidKids #CleanAir #Education #ChildHealth #Childhood #charity

@Nova_Scotia_Nadine I’m also confused by this app and could use a tutorial on how to find people as well #FBLC

👥👋🐘
Connecting the #LongCovid #MECFS community
🔹 Use hashtags #LongCovid #FBLC in bio & search
🔹 Write an #Introduction with that # & #LongCovid
🔹 Follow others - this creates your algorithm (not 🐦)
🔹Will Boost every Toot #LongCovid #MECFS to increase coverage
🔹 Here's a beginning list (1) of fab #LCME tooters
@Ody
@Ales_frost
@ahimsa_pdx
@cv_cev
@ClaireMyfanwy
@LaRougeAbeille
@Fascinatorfun
@ErinSandersNP
@maryGR67
@bcdelaney1
@ScribblerPen
@nataliahodgins
@amyboylanwrites

Ohhh la la , it's #followbackfriday ....

We are the only international, UK based charity for families, children and young people living with Long Covid.

We would love to connect with people interested in;

#LongCovid
#LongCovidKids
#SchoolNurses
#Education
#Science
#Covid19
#CleanAir
#ChildHealth
#ChildDevelopement
#Childhood
#Schools
#Family
#OccupationalTherapy
#Charity
#Volunteering
#Research

#FBLC #dogs #pets

@LongCovidAdvoc

I believe #pwLC #pwME and #LongCovid are good hashtags. No need to complicate it.

And, as you say, since #FBLC was popular on the other site, that could prove useful too. Since people might be searching for that specifically.

That said, I'm a #pwME and not Long Covid ME. But I followed people who are, and I think I might have seen a specific hashtag for that group too? Maybe #LCME ?