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URGENT ACTION - Labor-HHS requests deadline TOMORROW 12pm ET

Discussion in 'Advocacy Action Alerts' started by Emily Taylor, Mar 11, 2020.

  1. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Hello US Advocates!


    If you are able, please email or call your representatives this evening or tomorrow morning to make sure they are aware of this request.
    You can find your Representative's contact info at: https://www.house.gov/representatives/find-your-representative

    Below is a sample email you can use to send or as a call script.

    If sending an email, please make sure to COPY AND PASTE the entire E-Dear Colleague system email to include with your personalized message.


    SAMPLE EMAIL:


    Dear ((STAFF CONTACT OR MEMBER))

    I am writing to ask Representative ((NAME)) to co-sign the ME/CFS Labor-HHS request letter led by Congressman Bergman and Congresswoman Lofgren.


    As a constituent impacted by this devastating illness, I care deeply about improving and accelerating the government response that has been called "America's Hidden Health Crisis" by the Centers for Disease Control and Prevention (CDC).


    As you may know, ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion of any sort. ME/CFS goes undiagnosed in about 90 percent of patients.


    This onetime increase would allow the CDC to continue existing ME/CFS programs as well as conduct a national epidemiological study. A nationwide ME/CFS epidemiological study is necessary now more than ever given that ME/CFS epidemics have historically followed viral outbreaks such as the current COVID-19 epidemic.


    Please contact Priscilla Kim in Rep. Lofgren’s office at Priscilla.Kim@mail.house.gov, or x53072. The deadline to sign on is tomorrow, Thursday, March 12th!


    Thank you so much for taking this urgent action for ME/CFS research!


    Sincerely,


    ((YOUR NAME, AND ZIP CODE))


    *********************


    From: e-Dear Colleague
    Sent: Wednesday, March 11, 2020 5:22 PM
    To: Kim, Priscilla <Priscilla.Kim@mail.house.gov>
    Subject: e-DearColleague: Support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in FY2021


    Support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in FY2021

    Sending Office: Honorable Zoe Lofgren
    Sent By: Priscilla.Kim@mail.house.gov

    DEADLINE: Noon, Thursday, March 12th

    Current co-signers: Zoe Lofgren; Anna G. Eshoo; Jack Bergman; Suzanne Bonamici; André Carson; Judy Chu; Angie Craig; Peter A. DeFazio; Mark DeSaulnier; Bill Keating; Joseph P. Kennedy, III; James P. McGovern; Jackie Speier

    Dear Colleague:

    Please join us in sending the below letters to support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) research in the FY21 Appropriations bill.

    The first is to Labor HHS in support of $8.4 million for ME/CFS programs at the Centers for Disease Control and Prevention (CDC) and for accompanying report language. The second is to Defense requesting that ME/CFS be kept on the list of Congressionally Directed Topic Areas in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).

    As you may know, ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion of any sort. Referred to as “America’s hidden health crisis” by the CDC, ME/CFS goes undiagnosed in about 90 percent of patients.

    A nationwide ME/CFS epidemiological study is necessary now more than ever given that ME/CFS epidemics have historically followed viral outbreaks such as the current COVID-19 epidemic.

    Much needed funding, focused research, reliable data, and improved medical education will strengthen support for and improve the lives ME/CFS patients across the country. We hope you will join us in urging the Appropriations Committee to provide $8.4 million in funding for ME/CFS and to keep ME/CFS in PRMRP’s authorized topic areas.

    To sign on, or for further information, please contact Priscilla Kim in Rep. Lofgren’s office at Priscilla.Kim@mail.house.gov, or x53072. The deadline to sign on is NOON, Thursday, March 12th.

    Sincerely,


    ZOE LOFGREN ANNA G. ESHOO JACK BERGMAN

    Member of Congress Member of Congress Member of Congress



    March 13, 2020

    Dear Chairwoman DeLauro and Ranking Member Cole:

    As you begin work on the Fiscal Year 2021 Labor, Health and Human Services, and Education Appropriations bill, we respectfully request that you provide increased funding at $8.4 million for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Programs at the Centers for Disease Control and Prevention (CDC), and to include the attached report language to complement this work.

    ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion of any sort. The Institute of Medicine estimated in a 2015 report that between 836,000 and 2.5 million people in the United States suffer from ME/CFS. The CDC has labeled ME/CFS as “America’s hidden health crisis,” as a vast majority, about 90 percent, of people with ME/CFS remain undiagnosed.

    It costs individuals, the U.S. health care system, and our economy an estimated $17-$24 billion annually, as 25 percent of patients are bedbound or housebound at some time in their lives and an estimated 69 percent are unable to work.

    Requested funds include level funding for existing CDC programs addressing ME/CFS, such as the Multisite Clinical Assessment of ME/CFS (MCAM) study, the Common Data Elements project, and medical education efforts. An additional $3 million is requested to conduct a nationwide epidemiological study to update data on disease demographics and prevalence.

    Nationwide ME/CFS Epidemiological Study

    Current data on the demographic groups and number of people affected by ME/CFS is limited, localized, and outdated. There is a lack of accurate information about ME/CFS prevalence, risk, and natural history, making it difficult to mount an appropriate government response to the ME/CFS health crisis. However, a seven-year pediatric study recently found that 95 percent of youth who tested positive for ME/CFS were undiagnosed and that African American and Latinx youth were twice as likely to be living with undiagnosed ME/CFS. It was also found that the prevalence of pediatric ME/CFS was 0.75 percent, with a higher prevalence among African American and Latinx youth compared to their Caucasian peers. The CDC has not assessed the prevalence of ME/CFS in either adults or children since 2006, despite the Institute of Medicine providing new clinical criteria in 2015. Given that ME/CFS epidemics have historically followed viral outbreaks such as the current COVID-19 epidemic, it is vital that the CDC is armed with timely and relevant data about this complex and costly disease. As such, $3 million of the increased funds should be used to conduct a nationwide ME/CFS epidemiological study, the results of which would be reported to Congress within four years.

    Much needed funding, focused research, and improved medical education will strengthen support for and improve the lives of ME/CFS patients across the country.

    Again, we urge you to support $8.4 million in ME/CFS funding in the FY21 appropriations bill to fund the appropriate research and to develop strategies for effective treatment and prevention. We appreciate your leadership on this issue and thank you for your consideration of this request.

    Sincerely,

    March 17, 2019

    Dear Chair Visclosky and Ranking Member Calvert:

    As you begin work on the Fiscal Year 2021 Defense Appropriations bill, we respectfully request that you include language adding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, commonly referred to as ME/CFS, to the list of Congressionally Directed Topic Areas in the Peer Reviewed Medical Research Program (PRMRP).

    ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion of any sort. The Institute of Medicine estimated in a 2015 report that between 836,000 and 2.5 million people in the United States suffer from ME/CFS but a vast majority, about 90 percent, of people with the illness remain undiagnosed. There is currently no reliable clinical diagnostic criteria or Federal Drug Administration approved drug or treatment for ME/CFS.

    Although the causes of ME/CFS remain unknown, evidence suggests symptoms can be triggered by extreme systemic stress and exposure to viruses or environmental factors such as neurotoxins – situations and circumstances active duty service members are commonly and more likely to be subject to.

    The PRMRP listed ME/CFS as a Congressionally Directed Topic Area last year and we are awaiting the results of the award review process. A recent study found that 89 percent of veterans with Gulf War Illness also suffer from ME/CFS. In fact, the clinical presentations of ME/CFS and GWI are nearly identical, leading some researchers to hypothesize that GWI is a subset of ME/CFS. A study published in the Annals of Internal Medicine on the health of Gulf War Veterans found that Gulf War deployment is associated with an increased risk for ME/CFS, with another study showing that 15.7 percent of Gulf War veterans qualified under the 1994 definition of CFS. While not exclusive to military service members or veterans, there is a clear relationship between military service and incidents of ME/CFS.

    The inclusion of ME/CFS as a PRMRP Congressionally Directed Topic Area – thereby supporting research efforts related to the illness – will help improve our understanding of the prevalence and impact of ME/CFS among military service members, veterans, and beneficiaries, as well as define the underlying pathology to develop strategies for effective treatment and prevention.

    Again, we appreciate your leadership on this issue and thank you for your consideration of this request.

    Sincerely,

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    petrichor, Esther12, ahimsa and 6 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Monitoring for long-term outcomes is a no-brainer and should be automatic. The NIH and CDC better damn take their job seriously for once and actually pay attention to this, especially given observed prevalence of ME-like illness in the previous SARS outbreak.

    It's probably going to take screaming at them and using every procedure in the book to force them to do the most basic part of their job but this could be a huge turning point, not just for understanding ME but also for a broader understanding of the immune system, immune response and what the hell is happening in chronic illnesses.

    Because this will likely happen again. The turnaround for an effective response needs to go down dramatically. We need a Manhattan project scale effort to increase our ability to deal with viruses, outbreaks and latent chronic.

    Good on SolveME to be on top of this. This could open up huge resources to bridge the gap between acute phases and how ME-like illness develops.
     
    Emily Taylor, FMMM1 and sous-bois like this.
  3. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    ✅ done
     
    Emily Taylor and Esther12 like this.

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