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US: COVID-19 Long Haulers Act (H.R. 2754) Has Been Introduced

Discussion in 'Advocacy Projects and Campaigns' started by Andy, May 26, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    21,808
    Location:
    Hampshire, UK
    Text from a Solve ME email.

    Bipartisan Long Hauler Legislation
    Introduced Before Congress!


    Thanks to your dedication and advocacy efforts, the COVID-19 Long Haulers Act (H.R. 2754) was formally introduced before Congress!

    [​IMG]


    The legislation was first announced during Advocacy Week by Representatives Don Beyer (D-VA) and Jack Bergman (R-MI) at a bipartisan press conference hosted by Solve M.E. We feel this bill is the best opportunity for ME/CFS in decades. It contains provisions that will benefit people with ME/CFS specifically, and also applies to the broader community who suffer from post-viral illness.

    Solve M.E. and members of the Long COVID Alliance worked closely with Representative Beyer’s office to help craft data-driven policy solutions that meet the diverse needs of ALL long haulers and post-infectious illness patients.

    The bill contains many provisions that will benefit people with ME/CFS, such as nationwide medical education (with ME/CFS specifically identified), expanding prevalence tracking (with ME/CFS included), and research about access to post-viral care and diagnostics (which applies to everyone with post-viral illness).

    “We are incredibly honored and proud to have the support of Rep. Don Beyer and Rep. Jack Bergman to not only help us raise awareness of ME/CFS, but for their clear understanding that it is critical to attain much-needed funding and policy solutions,” said Solve M.E. CEO Oved Amitay. “Already, approximately 2.5 million Americans are afflicted with ME/CFS and COVID-19 is on target to double that number. Funding for education, research and treatment surrounding Long COVID and associated post-viral diseases like ME/CFS is not an option, it’s non-negotiable. The health of our nation depends on it.”

    To read the bill text in its entirety, click here.
     
  2. Braganca

    Braganca Senior Member (Voting Rights)

    Messages:
    313
    Really impressive work done by all the US ME associations including Solve to incorporate ME into the LC response at a political level. Thank goodness these orgs were established, and prepared to take the lead in this fight, and that Solve had built up their political lobbying over past 5 years, and I assume had relationships and strategies in place. I really believe it will change things for us.
     
    Amw66, Michelle, sebaaa and 18 others like this.
  3. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Messages:
    3,633
    It is looking like the US is making really good progress.

    From a distance it is looking like the ME and Long Covid lobby groups main problems there are dealing with apathy and disinterest rather than wilful denial. Hopefully this progress in the US can only help for those countries where both the medical and political establishment are active ME deniers.

    Here in the UK we seem to have made political progress but still have a long way to go to change the medical establishment; let’s hope that the new NICE guidelines in August help progress our cause. Also hopefully forums sharing information internationally help people in countries where it seems any change is still a distant pipe dream.

    [corrected typos]
     
    Last edited: May 26, 2021
    Helene, Hutan, sebaaa and 12 others like this.
  4. Roy S

    Roy S Senior Member (Voting Rights)

    Messages:
    459
    Location:
    Illinois, USA
    Based on my experience starting three decades ago as one of the few ME/CFS lobbyists, this looks good. I wish I was still able to be involved in it.

    We will eventually see if it helps us.

    A lot of efforts went into this and it is greatly appreciated.

    If I have this right-

    There was a hearing on this approximately 1.15 billion dolllars ($1,150,000,000.00) long covid / post acute covid19 money.

    I listened to much of it but the audio was poor for some people. There were many mentions of ME by various terms.

    Hearing on "The Long Haul: Forging a Path through the Lingering Effects of COVID-19" | Democrats, Energy and Commerce Committee (house.gov)

    This is the lobbyist that Solve ME/CFS Initiative has retained. There are a lot of misconceptions about lobbying the federal government. It is essential to have people who know what to do.

    Stuart Chapman - Thorn Run Partners

    Solve ME/CFS Initiative Lobbying Profile • OpenSecrets

    It also helps to have motivated people in high places-

    Solve ME/CFS Initiative on Twitter: "We are saddened #LongCOVID is impacting the son of @ASlavitt, White House COVID-19 Response Team Senior Adviser — esp. as more & more young people are hit by the debilitating & lasting effects of #COVID19. Slavitt shares his family's experiences here: https://t.co/SZ9yrvcMbL" / Twitter

    MEAction also sent a letter to the committee.

    #MEAction urges Congress to hold NIH accountable - #MEAction Network
     
    Snow Leopard, Hutan, Amw66 and 19 others like this.
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,617
    Location:
    Oregon, USA
    I thought I'd post a link in case anyone wants to track the progress of this proposed legislation -

    https://www.congress.gov/bill/117th-congress/house-bill/2754/text

    I'm happy the bill was introduced but until this gets passed by both House and Senate, and then signed by the president, it's just a proposal.

    (I hope that does not sound negative, just trying to be realistic)
     
  6. Dakota15

    Dakota15 Senior Member (Voting Rights)

    Messages:
    260

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