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**Japan Pop News** @news@wakoka.com · Nov 16, 2024

大破 @musashino205@mstdn.maud.io · Jan 6, 2024

**Longhauler Advocacy Project** @C19LAP@mastodon.world · Dec 28, 2022

Dec 28, 2022

Longhauler Advocacy Project @C19LAP@mastodon.world

*Sign-On Alert*

The purpose of this letter is to seek information from the acting NIH Director on what resources will be available in FY2023 for #LongCOVID and Associated Conditions (#LCAC) research in the absence of new appropriations.

Sign-on here: bit.ly/LCAPPROP

**Longhauler Advocacy Project** @C19LAP@mastodon.world · Nov 20, 2022

Nov 20, 2022

Longhauler Advocacy Project @C19LAP@mastodon.world

#LongHaulers struggle to find quality medical care, and have developed many medical conditions we refer to as #LongCovid Associated Conditions (#LCAC), such as #Dysautonomia, #ME/CFS, #mcas and many others. Knowledgeable specialists are hard to find! Help others by contributing a provider https://docs.google.com/forms/d/e/1FAIpQLSc460ZIEcwm2gOjeDtOlIq2KZWgfw5NUIBUqKuiQ1nRO_dQ_A/viewform

View providers added https://docs.google.com/spreadsheets/d/1qRz6jcMX2Yx7_prnJqdBQFXgVJE_CgZSlIYNshW3XJM/edit

Google DocsCOVID 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*

**Longhauler Advocacy Project** @C19LAP@mastodon.world · Nov 19, 2022

Nov 19, 2022

Longhauler Advocacy Project @C19LAP@mastodon.world

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

YouTubeThe challenging struggle of long COVIDBy ABC News

#FBLC #longhauler #COVID

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