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
Very interesting. I like the suggestion that PEM should be renamed "Post Exertional Disability" - much more accurate
Solve CFS Chronicle, Winter 2018, http://issuu.com/solvemecfsinitiative/docs/chronicle_110118_final2_epub?e=17941417/65903049 https://solvecfs.org/wp-content/uploads/2018/11/Chronicle_110118_FINAL2_epub.pdf or, https://solvecfs.org/archive/
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
Fall 2019 Contents 2 Solve M.E. This Quarter 5 Positive Forecast for ME/CFS Federal Funding in 2020 7 Interview with NANDS Working Group Chair Dr. Steve Roberds 8 Patient Voices 9 Solve M.E. Answers Reader Questions 10 Your Support Makes an Impact 11 Reflections from Solve M.E. Leadership Online version, https://issuu.com/solvemecfsinitiative/docs/chronicle_fall_2019_epub?fr=sNjgxYzUwODU1MQ PDF version, https://solvecfs.org/wp-content/uploads/2019/11/Chronicle_Fall_2019_epub.pdf
Thank you for sharing! If anyone would like to be featured in a future "Patient Voices" segment, please email me at ETaylor@solvecfs.org
Spring 2020 Contents P.2 Solve M.E. This Quarter: Spring 2020 P.6 YOU + M.E.: Bringing the Big Data Revolution to ME/CFS P.7 Solve M.E. Welcomes Community Collaboration P.8 Patient Voices P.9 Solve M.E. Answers Reader Questions P.10 Your Support Makes an Impact P.11 Reflections from Solve M.E. Leadership Online version, https://issuu.com/solvemecfsinitiative/docs/chronicle_epub_050520?fr=sODJkYjUwODU1MQ PDF version, https://solvecfs.org/wp-content/uploads/2020/06/Chronicle_050520.pdf
Solve M.E.’s Fall 2020 Edition of The Chronicle is Available Online Now! 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.
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
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/
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
Video: Solve M.E. President Oved Amitay on White House Chronicle: The Link Between ME/CFS and Long Covid Code: https://youtu.be/j5tcy82ss88 https://www.youtube.com/watch?v=j5tcy82ss88
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
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
Solve M.E. Webinar: Harnessing the Power of Community for Progress Code: https://youtu.be/xi-YD3wJH_0 https://www.youtube.com/watch?v=xi-YD3wJH_0
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
