Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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US Action - ME/CFS Awareness Day Congress Campaign

Discussion in 'Action Alerts and Advocacy' started by Emily Taylor, May 9, 2017.

  1. Emily Taylor

    Emily Taylor

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    As you’ve hopefully heard by now, the Solve ME/CFS Initiative and #MEAction have partnered to sponsor ME/CFS Advocacy weeks in May 2017! This monumental advocacy effort contains actions for every energy level and ability to join, from a social media post to a Washington DC face to face meeting with Congressional leaders. The goal of our efforts are to educate, empower, and deliver our message to Congress to take action on ME/CFS now!

    To support that effort and mark ME International Awareness Day on May 12, please contact your members of congress TODAY and tell them to HONOR May 12th , and ask them to ATTEND a congressional briefing on 5/18.

    You can use this online form to send a message to your members of congress immediately:
    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00005


    To take your advocacy to the next level, you can see additional steps and actions here:
    http://solvecfs.org/thank-you-for-taking-action/
     
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  2. Webdog

    Webdog Up to 91% remain undiagnosed

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    @Emily Taylor I notice you have chosen to use the high end number of 2.5 million sufferers for the congressional advocacy email and was curious as to why.

    The 2015 Institute of Medicine report (now National Academy of Medicine) states:

    "Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are debilitating conditions that affect somewhere between 836,000 and 2.5 million Americans (Jason et al., 1999, 2006b)."​

    Usually, I see a figure of "a million" or "over a million" when reading about ME/CFS.

    I feel a bit uncomfortable sending a message to my congressperson with the 2.5 million number in it, as I feel this figure is too high and may not accurately reflect the actual number of ME/CFS sufferers in the US.

    I truly appreciate that you have put together this advocacy webpage. But I would like to better understand the disease prevalence estimate. Thanks.
     
    halcyon likes this.
  3. Emily Taylor

    Emily Taylor

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    Hi Webdog -

    Thanks for your question. And, you are right - the estimates by the studies we have now vary wildly. We specifically use the term "estimated 2.5 million" knowing that the numbers are still uncertain.

    The CDC website estimates up to a 2.3% prevalence rate in the US - which would be almost 7.4 million people in the US with ME/CFS. But, we know that is not realistic.

    We definitely stick to the IOM report as a credible and politically neutral source of information. We use the bigger estimate to draw more attention and response. There simply isn't the space in a message (which must stay under 200 words for the electronic delivery system) to have a nuanced conversation about poor prevalence research, varying diagnostic criteria, the lack of a universally agreed upon case definition, and the other concerns that lead to our limited ability to pin down a solid prevalence figure. And, I have my doubts that some members of congress would be able to follow that conversation anyway.

    The short answer is - because it gets their attention and allows us to begin the conversation.

    Once we get our foot in the door, we can broaden out that conversation. I highly recommend you check out my webinar "6 ways to maximize your congressional advocacy" where I get into some of the strategies about how to build relationships with congressional offices - in order to get to the stage where you can have those more detailed and complex conversations.

    You can see the webinar here:

    All the best,

    ~Emily
     
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  4. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  5. Nielk

    Nielk

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    The IOM work on ME/CFS was not neutral. It was sponsored by the US government health agencies. It was HHS who dictated the scope and rules for the work and had ongoing input into the IOM work.

    In addition, all of the IOM's report was based on studies within the scope allowed by HHS.

    The IOM's figures of prevalence was based on the CDC's which were based on faulty CDC criteria.
     
    halcyon likes this.
  6. Webdog

    Webdog Up to 91% remain undiagnosed

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    Thanks Emily. Makes sense. Certainly we haven't gotten their attention yet, but I'm confident you will help change that.

    Thanks for being our advocate. :)
     
    MEMum, Rowena Ilagan and Emily Taylor like this.
  7. Emily Taylor

    Emily Taylor

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    Hi Nielk -

    Thanks for your comment - and you are right too! When I say "politically neutral" I largely mean non-partisan (aka neither from the democrats or the republicans). Many organizations use data compiled by think tanks with distinct political leanings. Using this data can immediately push away the opposing party.

    So, for better or worse, the IOM report is "politically neutral" meaning bi-partisan. As for the quality of the data they compiled.... well that's another discussion entirely :)

    All the best,

    ~Emily
     
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  8. dancer

    dancer Senior Member

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    Thank you for making this easy and do-able. I'm in a crash, and was tempted to slide past the call for advocacy, but the form made it possible for me to send - even on a bedbound/little-brain day. :)
     
    MEMum, Groggy Doggy, Aroa and 2 others like this.
  9. ahimsa

    ahimsa Sick since 1990

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  10. ahimsa

    ahimsa Sick since 1990

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    Oregon, USA

    Attached Files:

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  11. Emily Taylor

    Emily Taylor

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    Thank you, ahimsa! I wish I could take credit for the beautiful flyer - but all those kudos goes to our amazing graphic designer. She works with us at a "friend price" discount because she believes in our cause :)
     
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  12. Aroa

    Aroa

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    Thank you so much @Emily Taylor for your fantastic work !!!!!

    I felt very exited when I saw your vídeo. We, Me people, are all warriors and fighters like you and together we will end with this devastating disease.

    Thank you :heart:
     
  13. Emily Taylor

    Emily Taylor

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    Thank you for your kind words, Aroa! I love what I do! And at the same time, words like this from people like you fuel my passion every day. Our whole team couldn't do what we do without the moral and financial support from the ME/CFS community.
     
    ahimsa, Missense, Aroa and 2 others like this.
  14. Diwi9

    Diwi9 Senior Member

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    Believe it @Emily Taylor ...Cort's write-ups on you are more than deserved. You are a force of change for us. I'm participating because of your leadership. Thank you is NOT enough.
     

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