Tatiana Trifan #FBLCDoes 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.
SammieSharing my experience gives me hope that our future will look differently.
It just takes one person with resources to listen and act.
Lovely to meet Tresia 🤗
Listen from 26.53
https://www.bbc.co.uk/programmes/w172z0vsc2yff4l
Longhauler Advocacy ProjectHave 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
COVID Competent Provider Recommendation Form.
The COVID-19 Pandemic has left ~17-69 million people in the United States and ~108-431 million people worldwide chronically ill due to Long COVID and its Associated Conditions (LCAC). With no mandate for providers to stay abreast of Long COVID research, with no national screening or treatment protocols for Long COVID, and with limited health care personnel trained in post-viral illnesses, especially those appearing in Long COVID like Dysautonomia, ME/CFS, Mast Cell Activation Syndrome and many others, patients have faced barrier after barrier when seeking care. The failure of healthcare workers to stay abreast of Long COVID research and educate themselves on the LCAC's to assist the inevitable tens to hundreds of patients they will have with Long COVID has created delays in referrals to specialists and treatment, disease progression, inability to access assistance programs because of lack of documentation, and of course the stress and provocation of mental health challenges faced due to medical gaslighting and by providers who simple do not care, blame anxiety or psychosomatic issues or fire patients. The COVID-19 Longhauler Advocacy Project is a Long COVID Non-Profit whose mission is to advance the understanding of Long COVID and expedite solutions and assistance to Longhaulers and their families through advocacy, education, research and support. The purpose of this form is for for you, the community, to recommend the providers who are what we are calling "COVID Competent" so that we can expedite access to quality care for Longhaulers, preserving spoons and hopefully preventing or limiting exposure to medical gaslighting and excessive costs from chasing numerous providers. The current list of recommended doctors can be found below. http://bit.ly/OFFICIAL-LIST-COVIDCompetentProviders *Please Note: we do NOT endorse any of the providers listed, nor do we have personal experience with them. All submissions are made voluntarily by community members with a patient-provider relationship or experience. If you see a provider off of this list, there is no guarantee you may have the same experience as the person who nominated them. the COVID-19 Longhauler Advocacy Project hold no responsibility or liability for your use of a provider on this list. However, if you disagree with the recommendation of a provider on this list, we would like to hear from you regarding the details of your experience. If there are providers participating in controversial treatment or misinformation listed, please immediately bring this to our attention.** We are looking ONLY for health care providers who: 1- Are aware of and believe in Long COVID and your issues/ complaints 2- Are, in your opinion, at least a 6/10 in their understanding of Long COVID 3- Understand the role Long COVID in the development of Dysautonomia, ME/CFS/ MCAS and others. 4- Were not fully up to date on Long COVID or its associated conditions, but admitted that and made an effort to research and learn about it for your next appointment, and there was improvement and a willingness to learn. 5- Those who help coordinate your care with other providers and believe in comprehensive systemic care. 6- Those who are willing to treat you via sending you for testing, imaging, prescribing medications etc. vs telling you to wait it out or it will get better on its own. *if your provider does not seem like the description above, please do not enter them on this form*
BadiaAiring on @BBC1 at 2000 GMT today. Featuring HCWs afflicted by #LongCovid. #FBLC #covid #nhs #keyworker
Katsue Fox@jamesglen Although I don't have Long Covid, I think #FBLC is a great idea.
Ty From Seeking BostonThere'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
@LongCovidKids
Where does this leave the “do more exercise”, “reframe your thoughts to control your symptoms” and “CBT and being more positive” brigade?
It’s almost as if biomedical research could be useful. 
LongCovidKidsThe 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.
Long COVID Added to List of Autoimmune Diseases — The Autoimmune Registry
At the Autoimmune Registry, we publish a list of over 100 confirmed and suspected autoimmune diseases. While scientists don't yet fully understand the mechanism behind long Covid, many suspect it to be autoimmune. By listing long Covid as an unconfirmed autoimmune disease, we aim to collect data on
Philzilla℠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
