Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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SMCI Monthly Update Thread - March 2018

Discussion in 'General ME/CFS News' started by Emily Taylor, Mar 5, 2018.

  1. Emily Taylor

    Emily Taylor

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    Hello from the Solve ME/CFS Initiative. We want to share our latest news and research with you, but we also want to respect your space and not spam the forums. In order to do that, we are starting a monthly thread where will we add all of the latest news from SMCI. Throughout the month we plan to use this thread to post our latest news and research.
     
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  2. Emily Taylor

    Emily Taylor

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    2016 Ramsay: Research Team 1 Update

    Dr. Jarred Younger (University of Alabama at Birmingham) recently provided Solve ME/CFS Initiative (SMCI) with a progress update on the Ramsay 2016 Research Team 1 project. He reflected on what motivated him to study neuroinflammation in ME/CFS and how pilot grants like the Ramsay Award can jump start promising lines of investigation. READ MORE
     
  3. Emily Taylor

    Emily Taylor

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    Members of Congress are coming together in a single voice to stand for ME/CFS. Will your Representative join them?

    This week, SMCI staff and Board of Directors traveled to Washington DC and got results!

    Congresswomen Ana Eshoo and Zoe Lofgren are leading other members of congress in a letter and appropriations request for ME/CFS. Read the full letter and committee report language here. In brief, the proposed effort:

    (1) Supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),

    (2) Encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,

    (3) Recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,

    (4) Urges the Department of Health and Human Services to devise a multi-year strategic plan. The sign-on letter states that the increases in NIH’s budget affords NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden.

    This action is a joint effort between #MEAction and the Solve ME/CFS Initiative.

    Use our easy form to send a message to your member of congress and ask them to join the effort today – *deadline is March 14*!
     
    Last edited by a moderator: Mar 10, 2018
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  4. Laurie P

    Laurie P

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    Thank you for getting this letter written! I hope we can get a lot of signatures and that it has some impact.

    I just want to add a little information in case it helps other people.

    The deadline for your representative to sign the letter is Wednesday, March 14. The #MEAction page is more comprehensive and gives instructions for people who can also call their representative.

    https://www.meaction.net/2018/03/07...ction-ask-your-rep-to-sign-letter-for-me-cfs/

    I sent my letter from my representative’s website and modified it slightly in the body of the letter to add a little personal information, to thank him for signing last year and to thank him for the work he does. I also put 3/14 DEADLINE… in the subject line before asking him to sign the letter in the subject line.

    If you use the SMCI form you can add the “I appreciate your support in signing the letter last year, and ask that you show your support again for people with ME/CFS” line there too if your representative signed it last year.

    Since this was another joint effort between SMCI and #MEAction, I’m not sure why they don’t link to each other’s pages so that pwME can read both pages before determining what they are going to do. I also wish that we had more notice on these things so that we aren’t so rushed as patients and so we can give our representative a little more notice too.
     
  5. Emily Taylor

    Emily Taylor

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    Hi Laurie -

    Thanks for sharing this additional information - appreciate your input, some very thoughtful ideas. I will add a link to the #MEAction page to our own.

    Unfortunately, these actions are very last-minute due to the nature of Capitol Hill - we wish we had more notice too! But, we are dependent on our congressional partners and their timelines. The timing for this action was particularly difficult because the deadline is a month earlier than last year and overlapped with our other advocacy efforts for new research funding. But, also very fortunate because I was already in Washington DC working on this other opportunity and able to make this happen at the same time.

    (To learn more about our research funding effort, visit here!)

    In short, we do the best we can with what we have and I am a mighty advocacy department of one. So, always appreciate and encourage ideas of how to improve.

    All the best,

    ~Emily

     
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  6. Emily Taylor

    Emily Taylor

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    Page is updated! You can view it here:
    http://solvecfs.org/thank-taking-action-28/

     
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  7. Emily Taylor

    Emily Taylor

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    Register now for ME/CFS Advocacy Day on Capitol Hill!

    ME/CFS Advocacy Day on Capitol Hill brings people with ME/CFS, their loved ones, advocates, scientists, clinicians and caregivers from across the country to meet other advocates, share their unique stories with members of congress, and call for action and research funding, together in one voice.

    Check out the May ME/CFS Advocacy Week page for more information.

    To register for ME/CFS Advocacy Day on Tuesday May 15, visit the registration page.

    SMCI will provide:

    • All needed materials for meetings with Congress
    • Advocacy Training
    • Scheduling of meetings with YOUR representative and/or senators
    • A special rest area on Capitol Hill to make the experience as easy as possible, and to spend down time / rest time with other advocates.
    You’ll be responsible for your hotel and travel to the event. SMCI is securing hotel blocks that will be available from May 12-16.

    Advanced Registration is required for Tuesday, May 15th, so that we have time to set up meetings with your congressional representatives.

    To learn more or to register for the event visit our registration page.
     
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  8. Emily Taylor

    Emily Taylor

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    SMCI's Research Advisory Board member, Dr. Maureen Hanson, publishes new study
    Research Highlight: Eukaryotes in the gut microbiota in myalgic encephalomyelitis/chronic fatigue syndrome

    • Researchers did not find significant alteration of gut eukaryotes – fungi and protozoa – in ME/CFS patients
    • They do note a non-significant (meaning the possibility of chance cannot be ruled out) decrease in diversity of gut eukaryotes – in ME/CFS as compared to healthy controls
    • They also found indications of a pro-inflammatory environment in the guts of patients, building on previous research findings
    • Work to characterize eukaryotes in ME/CFS is a less explored area of the gut microbiome; future studies might contribute to better understanding of how the complex interactions between the community of microorganisms in our guts factor into ME/CFS
    READ MORE
     
  9. Emily Taylor

    Emily Taylor

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    Just a quick update for ME/CFS Advocacy Day on Capitol Hill:

    I’m happy to share that the room block is now available. You can book online at: https://book.passkey.com/go/SolveMECFS

    Or, if booking by phone use code “SolveMECFS” for reduced rates, free breakfast and free wifi.

    More details are now available on the event webpage at: https://solvecfs.org/2nd-annual-cfs-advocacy-week/

    If you have any questions, please email me at etaylor@solvecfs.org

    Thanks!


     
  10. Emily Taylor

    Emily Taylor

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    One more update!

    Travel Award Assistance Application is on the website now.

    You can find these details at: https://solvecfs.org/2nd-annual-cfs-advocacy-week/

     

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