New Long Covid non-profit 501(c)(3) org registered: Long COVID Foundation (LCF)

Discussion in 'Long Covid news' started by Dx Revision Watch, Oct 29, 2023.

  1. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    A new US non-profit 501(c)(3) org has been announced:

    Long COVID Foundation (LCF):


    Website: https://www.longcfoundation.org

    Partners:
    @LongCovidAP
    @LCawarenessInt
    @React19org

    https://twitter.com/user/status/1718115100521816412





    Long COVID Foundation
    @LongCFoundation


    We are very pleased to announce the official beginning of the “Long COVID Foundation” (LCF), a non-profit 501(c)(3), & release of its’ website http://longcfoundation.org. You can also find us on Instagram as well at longcovfoundation.

    Thread
     
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  2. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  3. Trish

    Trish Moderator Staff Member

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    Quoting their mission statement (paragraph breaks added)

    https://www.longcfoundation.org/about

    Mission



    At the Long COVID Foundation, our mission is to bring awareness to the public regarding Long COVID & other pandemic related issues, advocate for better testing, trials, & treatments for Long COVID, and take action in assisting COVID Long Haulers, and others affected by the pandemic, which includes putting forth campaigns to aid in the mitigation of COVID and other actions.

    We are big believers that COVID Viral Persistence and COVID Spike Persistence should be a main focus of researchers and others. In order to regain health it's important to get to the root cause of an illness and treat it. It would be less than ideal for the Long COVID Community to go through what those with Chronic Lyme and other chronic conditions have gone thorough. Especially with all the research already available showing persistence of COVID, viral RNA, & spike protein. This is one of the main reasons the Long COVID Foundation was formed.

    Tens of millions of people have, or have had, Long COVID in the United States alone, where we are based. We don't not want them to fall by the wayside like so many millions with chronic illness have in the decades prior to COVID. Enough is enough. We need better commercially available testing and better treatments to eliminate these chronic pathogens and do what's needed to heal these chronic illnesses. Assisting people to regain their health is our main goal. We understand the complexity and hurdles of that, but we will do what we can to help.

    * Awareness: There are many people who still do not know the term "Long COVID" or how life altering Long COVID can be. They're unaware of the damage it causes physically and otherwise. A big piece of bringing awareness will be the docuseries "Castaways", currently being filmed. The Long COVID Foundation is assisting in the editing and production side of the series. We will also be doing billboard campaigns and more to get the word out.

    * Advocacy: We advocate for better tests, trials, and treatments. There is a plethora of research showing COVID can be persistent so we want to make sure that avenue is properly explored, and not ignored like with many chronic illnesses previously.

    * Action: Action is where we see our largest contributions. We will push for COVID mitigation, especially in hospitals, large public spaces, and schools. In the future we aim to provide help to COVID Long Haulers and the COVID Vaccine Injured in particular, with direct care clinics. The clinics will take a lot of money to create properly (sufficient filtration systems, most advanced integrative technology, etc.), so this is a goal for the future.
     
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  4. Trish

    Trish Moderator Staff Member

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    So it appears that the main focus of the foundation is making their film and advocacy.

    It seems odd for an organisation that says getting to the root cause is vital to base their ideas about cause entirely on viral and spike protein persistence.
     
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  5. Trish

    Trish Moderator Staff Member

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    About their film series:

    https://www.longcfoundation.org/docuseries

    more at link

    So far he's paying for it himself. The organisation is fundraising to help pay for editing etc.
     
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  6. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Thanks for adding additional content, Trish.
     
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  7. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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  8. Trish

    Trish Moderator Staff Member

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    It looks to me like a small group of friends supporting an individual who has decided to make a documentary. I assume the main reason for setting up as a foundation is so they can publicise and fundraise for the film.

    They have already fixed on their belief about the cause of LC.
    That this leads them to pick fights with other LC patient organisations over the cause of LC doesn't bode well.
     
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  9. EndME

    EndME Senior Member (Voting Rights)

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    Great, so the only statement they've ever made is to pick fights with other patient organisations. Seems very similar to
    https://twitter.com/LongCovidAP and their founder https://twitter.com/JoshuaPribanic whose main focus seems to be to pick fights left and right with other patient organisations and researchers instead of doing actual advocacy work.
     
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  10. duncan

    duncan Senior Member (Voting Rights)

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    It's easier, I suspect, to embrace a specific theory when the pathogen causing the root disease is widely known and uncontested. Add, potentially, the belief that the public has been misled at some point, that's a powerful mix.

    It's no coincidence they've mentioned chronic Lyme as a cautionary tale in their mission statement.

    It might have been more prudent to remain agnostic for the launch of their organization.
     
    Last edited: Oct 29, 2023
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  11. jonathan_h

    jonathan_h Established Member (Voting Rights)

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    Exactly. For context, the Twitter user in this screenshot is the main person behind this org. They frequently say disparaging and ignorant things about ME/CFS and pwME. They also claim to have previously run a “Lyme clinic.” Given that I’ve never seen them mention having medical credentials, I assume this was an alt med thing.
     

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    Last edited: Oct 29, 2023
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  12. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    https://covidcastaways.org/about/

    "After contracting Long COVID on June 11st [sic] 2020 my four years of managing an integrative clinic comes to an end."

    Edited to add: Russell has said in a Tweet that the clinic he managed was: "An integrative clinic centered around chronic illness (Lyme in particular)."
     
    Last edited: Oct 30, 2023
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  13. Ash

    Ash Senior Member (Voting Rights)

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    It’s more annoying and less upsetting to be mischaracterised by a blanket statement from a newbie, than it is to receive this from the usual professional BPS/medical directions.

    But geese, is this one fully ignorant? Or just not one for history?

    After all…Viral persistence is a very old idea. In fact it happens to even predate COVID-19. Unbelievable how far back stuff goes isn’t?

    I inherited this idea from old books my parents and I picked up in charity shops mostly these had been written in the 80,s 90’s. It was a very popular belief in the ME community, for decades.

    So I am afraid…Right or wrong, we had this one first. Well after, all the other people who had it before us.

    Of course we are a generous people, one and all may borrow ideas from us. There are plenty of ideas to go around, like glitter and other micro plastics they go everywhere, plenty, all are more than welcome to share!
     
    Last edited: Oct 29, 2023
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  14. Dx Revision Watch

    Dx Revision Watch Senior Member (Voting Rights)

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    Well, it all got rather combative, rather quickly...
     
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