1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

USA: News from Solve ME

Discussion in 'News from organisations' started by Andy, May 18, 2018.

  1. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    The Solve Newsletter thread has been merged with this thread.

    Spring 2018

    Contents:
    Page 2 - SMCI This Quarter: A Summary of Our Work
    Page 5 - SMCI Welcomes Two New Members to Its Board of Directors
    Page 6 - What’s in a Definition? Finding a Common Language for ME/CFS
    Page 8 - PEM: It’s Time to Retire the Term
    Page 9 - Dr. Maureen Hanson: From Plant Biology to ME/CFS Champion
    Page 12 - Advocacy in Action: 44 Members of Congress Unite for ME/CFS Funding
    Page 14 - M.E. Too? Can the Women’s Health Equity Movement Bring Attention to ME/CFS?
    Page 16 - Patient Voices
    Page 17 - SMCI Answers Reader Questions
    Page 18 - Your Support Fuels Our Efforts
    Page 19 - Reflections from Our President Carol Head

    View online,http://issuu.com/solvemecfsinitiative/docs/chronicle_050918_epub?e=17941417/61119520

    or in PDF form, https://solvecfs.org/wp-content/uploads/2018/05/Chronicle_050918_epub.pdf
     
    Last edited: Nov 19, 2020
    MEMarge, ahimsa, Sly Saint and 6 others like this.
  2. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Shhh, the first rule of IAME club is that you don't talk about IAME club! ;)
     
    MEMarge, Yessica, Lisa108 and 3 others like this.
  3. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    475
    Very interesting. I like the suggestion that PEM should be renamed "Post Exertional Disability" - much more accurate :thumbup:
     
    andypants and adambeyoncelowe like this.
  4. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    4,440
    Location:
    Cornwall, UK
  5. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Spring 2019

    Contents
    • SMCI This Quarter: A Summary of Our Work in Research, Advocacy and Beyond
    • ME/CFS Research: The First Quarter of 2019 in Review
    • We Fight for You in the Halls of Power
    • Patient Voices
    • SMCI Answers Reader Questions
    • Your Support Makes an Impact!
    • Reflections from Our President Carol Head

    PDF version, https://solvecfs.org/wp-content/uploads/2019/05/Chronicle_041119_Final_pages.pdf
    Online version, https://issuu.com/solvemecfsinitiative/docs/chronicle_041119_final_pages_3dfce603309c10
     
    Last edited: Nov 19, 2020
  6. Dudden

    Dudden Established Member (Voting Rights)

    Messages:
    68
    Thank you, Andy.
     
    MEMarge, Trish and Andy like this.
  7. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Last edited: Nov 19, 2020
    MEMarge, mariovitali, rvallee and 4 others like this.
  8. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

    Messages:
    111
    Location:
    Los Angeles, CA
    Thank you for sharing! If anyone would like to be featured in a future "Patient Voices" segment, please email me at ETaylor@solvecfs.org
     
    ahimsa, ME/CFS Skeptic, Andy and 2 others like this.
  9. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Last edited: Nov 19, 2020
    ahimsa, Yessica, Sean and 3 others like this.
  10. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Solve M.E.’s Fall 2020 Edition of The Chronicle is Available Online Now!

    [​IMG]

    The electronic version of our flagship research and advocacy journal, The Chronicle, has arrived! It includes a profile of new Solve M.E. President Oved Amitay, an overview of the historic ME/CFS bill H.R. 7057, results from You + ME Registry and Biobank user surveys and more!

    To read the entire Fall 2020 Chronicle, go here.

    For the PDF version, go here.





    Or, read the individual articles here:


    CEO Oved Amitay Ushers in the Next Chapter for Solve M.E.

    H.R. 7057: Historic Legislation for the ME/ CFS Community

    The You + ME Registry: Together, We Can

    Reader Questions

    Solve M.E. This Quarter

    Reflections from Our President Oved Amitay

    Patient Voices

    It Starts with You

    To have the next print edition delivered free of charge by mail to your home or business, go here.
     
    shak8, petrichor, Amw66 and 2 others like this.
  11. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Action for ME and Solve ME/CFS Initative announce partnership

    Action for M.E. is pleased to announce its trans-Atlantic partnership with US charity Solve M.E., focused on enhancing the wellbeing of people with M.E., raising awareness, delivering policy changes, and increasing research on its causes and possible treatments.

    The partnership consists of three initiatives:

    • A two year postdoctoral fellowship designed to prepare postdoctoral researchers to excel in a career focusing on applying computational biology,
    • biostatistics, quantitative genetic, and data science to understanding the molecular basis of M.E. It includes one year being mentored by Prof Chris Ponting at the University of Edinburgh (also co-leading DecodeME) and a year mentored by Dr Liz Worthey at the University of Alabama.
    • Exploring how a digital platform like HealthTree can benefit people with M.E., connecting them with peer-support, shared experiences of symptom management, and research to which they can contribute. HealthTree has already started to do this successfully for people with myeloma.
    • Global advocacy in collaboration with the International Alliance for M.E., including plans for this year’s M.E. Awareness Month.

    From a You+ME Registry tweet
    "We're pleased to share that we're partnering with @actionforme on a post-doctoral fellowship, global advocacy + an exploration of a digital platform that connects #pwME with peer support + other resources. #ME/CFS."

    Code:
    https://twitter.com/YouMeRegistry/status/1368962374691127299
     
    Last edited by a moderator: Mar 11, 2021
    Yessica, sebaaa, MEMarge and 13 others like this.
  12. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    From a Solve email.

    Solve M.E. Partners with UCLA on ME/CFS Research
    on Brain Stimulation

    First time ME/CFS included in UCLA program

    We’re excited to announce that Solve M.E. has partnered with the University of California, Los Angeles (UCLA) Iris Cantor Women’s Health Center to expand ME/CFS research through their Annual Health Pilot Program—the first time an ME/CFS study has been included. Solve M.E. will support a study by the UCLA Neuromodulation Division on a promising investigational treatment. The partnership is generously supported by Karl Zeile, a Solve M.E. board member, and Dian Zeile.

    Fifteen female subjects will receive 20 sessions of Repetitive Transcranial Magnetic Stimulation (rTMS), a non-invasive brain stimulation technique with demonstrated efficacy for treatment of depression, pain, sleep, and cognitive symptoms which are common in patients with ME/CFS.

    The treatment will include stimulation to two sites in the brain that can help relieve these symptoms (the left dorsolateral prefrontal cortex and primary motor cortex). Changes in brain activity will be monitored with high-density electroencephalography which can help to improve our understanding of the mechanisms underlying treatment of ME/CFS.

    “We anticipate that rTMS treatment will significantly improve many of the symptoms of ME/CFS. Positive results from this study will provide proof-of-concept evidence for a novel rTMS treatment approach for ME/CFS to be validated in a future double-blind, randomized control trial,” said Juliana Corlier, assistant project scientist and Andrew F. Leuchter, MD, Professor of Psychiatry.

    Solve M.E. Chief Scientific Officer Sadie Whittaker remarked, “We are thrilled that ME/CFS, a disease diagnosed four-fold more in women than in men, was included in the UCLA Iris Cantor Center Annual Health Pilot Program and could not be more excited about this project. We believe that this partnership with UCLA will help increase awareness of ME/CFS and open up conversations about how ME/CFS is diagnosed within UCLA Health.”

    A thread to discuss the possibility of rTMS as a treatment and the proposed study is here
    https://www.s4me.info/threads/transcranial-magnetic-stimulation-brain-stimulation.20266/
     
    Last edited by a moderator: Apr 23, 2021
    Simone, Hutan, Aroa and 7 others like this.
  13. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Video: Advocacy in Action: March 18, 2021

    In this new series, we highlight the impact your advocacy has both in government, and in the lives of people suffering from ME/CFS. Join Solve M.E. Director of Advocacy Emily Taylor as she showcases some of the direct results your advocacy has — including today’s video, in which questions submitted by Solve M.E. and the Long COVID Alliance were addressed before Congress.

    Code:
    https://youtu.be/mjkVf8csits

    https://www.youtube.com/watch?v=mjkVf8csits


     
    ahimsa, cfsandmore, Snowdrop and 2 others like this.
  14. cfsandmore

    cfsandmore Senior Member (Voting Rights)

    Messages:
    205
    Location:
    USA
    Dr. Fauci was stressing the point that long covid is real. I hope that didn't fall on deaf ears.
     
    ahimsa likes this.
  15. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
  16. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    The Spring 2021 Edition of The Chronicle is Available Online Now!

    2 Solve M.E. Forges New Partnerships for 2021 ME/CFS & Long COVID Advocacy Week
    4 Solve M.E. This Quarter: Spring 2021
    5 Solve M.E. Convenes The Long Covid Alliance: Joining Forces, Creating Change
    6 You + ME Registry Marks Milestone
    8 Patient Voices
    9 Solve M.E. Answers Reader Questions
    10 It Starts with You
    11 Reflections from President and CEO Oved Amitay

    PDF, https://solvecfs.org/wp-content/uploads/2021/04/Chronicle_Spring_2021.pdf
     
    Trish likes this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    51,871
    Location:
    UK
    Webinar:
    Topic
    Harnessing the Power of Community for Progress in the Fight Against ME/CFS
    Description
    What progress has been made in the areas of ME/CFS advocacy this year? How have our efforts helped move the needle? What’s our vision for the future? Tune in for a conversation between Solve M.E. President Oved Amitay and Director of Advocacy and Engagement Emily Taylor as they discuss the ways in which community involvement is driving our biggest successes, and why the time is right for taking bold new steps in the fight against ME/CFS.
    Time
    Jun 9, 2021 02:00 PM in Pacific Time (US and Canada)

    https://us02web.zoom.us/webinar/register/WN_PqM8lCJ_TfWIZl9T7ll4Zw
     
    MEMarge, Invisible Woman and Andy like this.
  18. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    Yessica, ahimsa, Trish and 2 others like this.
  19. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    From a Solve email

    "The electronic version of Research 1st is here! Our spring 2021 edition includes insights on the path to diagnostics for ME/CFS and how studying Long COVID could pave a short-cut, as well as a look at how we’re leveraging the You + ME Registry and Biobank to harness the power of Big Data to understand both ME/CFS and Long COVID.

    Also included in this edition is news about two new partnerships, and a report on how Dr. Sadie Whittaker, our chief scientific officer, successfully embedded the study of ME/CFS in one of the top medical schools in the country."

    Online version, https://issuu.com/solvemecfsinitiative/docs/research_1st_060721_epub
    PDF version, https://solvecfs.org/wp-content/uploads/2021/06/Research_1st_060721_epub.pdf
     
    Yessica, cfsandmore, ahimsa and 2 others like this.
  20. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,299
    Location:
    Canada

Share This Page