In this month's newsletter, an invitation to our annual event on October 26th at Newton-Wellesley Hospital, a thank you to everyone who donated to the Half Marathon Fundraiser, an award for the film Unrest, a course for parent caregivers, exciting news about the IACFS/ME conference, and a reminder to download papers from the ME/CFS special issue. Read on for all the details.
Please join us for our Annual Event on Saturday, October 26th, 2019 from 1 to 4 pm at Newton-Wellesley Hospital, featuring Dr. Michael VanElzakker of MGH/Harvard Medical School. We will have a brief business meeting, a research presentation by Dr. VanElzakker, an update on the Harvard ME/CFS Collaboration, and a chance to meet fellow members of the Association. We look forward to seeing you! Register here.
Investigating ME/CFS at the intersection of the nervous and immune systems
Dr. Michael VanElzakker of MGH/Harvard Medical School
Saturday, October 26th, 2019 1:00 PM to 4:00 PM
Doors open at 12:30 p.m. for check-in
Shipley Auditorium, Bowles Conference Center
Newton Wellesley Hospital
2014 Washington St.
Newton, MA 02462
Park in the lot near the West (Main) Entrance. Directions from the parking areas to the Auditorium can be found here.
Join or renew your membership at the event! This program is open to the public and free to members of the Association, journalists, researchers and health care professionals; $15 voluntary donation for non-members.
Michael VanElzakker, PhD is a research fellow in the neurotherapeutics division of Massachusetts General Hospital / Harvard Medical School. He will discuss some challenges and opportunities in using brain scans to study communication between the immune and nervous systems. He will describe two ongoing studies that seek to elucidate autonomic dysfunction and possible neuroinflammation in ME/CFS. He will also give an update on the OMF-funded Harvard ME/CFS Collaboration.
Download the event flyer here! Please distribute widely.
Thank you to everyone who supported the Half Marathon Team! We had 92 donors and raised more than $7,000. Holly, Liz and Leah had an awesome run -- the weather was perfect and the course (through Franklin Park, down the Arborway past Jamaica Pond and back, through the zoo and into White Stadium) was beautiful. Sadly, Arielle wasn't able to run due to a running injury, but she and her father, Phil, cheered the team on.
The documenatry Unrest has been selected as a 2019 Doc Impact Hi5 honoree! This award is not for the film making, but for the impact that the film has had on the community for raising awareness about ME/CFS. Part of the award is an 80-page in depth study of how Unrest was promoted and the impact it had. Our Association is prominently mentioned for the number and high quality of Unrest events we organized. Thank you to all our volunteers who made these events happen and special thanks to Rivka Solomon for her incredible organizing and promotional skills.
Resilience and Self-Care for Caring Parents course combines evidence based mindfulness, stress reduction, self-care and resilience building techniques. It provides experiential and instructional learning along with sharing in a live and online format. If you are a parent caring for a child or children of all ages, with illnesses and other demanding conditions, this may be for you.
Hosted by: Yasemin Isler, fellow parent, mindfulness, resilience teacher and coach.
To learn more or Register: https://www.tuned-minds.com/resilience-and-self-care-for-care-giving-parents
Format: The format is live-online sessions (i.e., not prerecorded), that you can join from the comfort of your own location. All you need is a computer, and access to the Internet.
Dates: Orientation: Monday Nov 11, 2019 12-1:15PM EST & Classes: Mondays Nov 25 - Dec 16, 2019 12PM-1:30PM EST (5 weeks). The orientation is free and the 5 sessions are available on a sliding scale.
The next International Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) conference will be held at Stony Brook University in Stony Brook, NY on Long Island from June 10-13, 2020. The conference will feature research and clinical presentations, a poster session, and workshops on special topics. At past conferences, there have been dedicated workshops and presentations for patients and caregivers, in addition to the technical conference for researchers and clinicians. Our members who attended the last conference in Fort Lauderdale, FL in 2016 said it was a great experience. Abstract submission will open in November, 2019 and registration will open in spring 2020. No conference website yet, but watch this space for more news.
Advances in ME/CFS Research and Clinical Care, a series of 25 papers on ME/CFS published in 2018-2019 in the online (open access, peer-reviewed) journals Frontiers in Neurology and Frontiers in Pediatrics, is in the running to win a $100,000 prize! The prize money must be used to fund a scientific conference on the topic. If it wins, the topic editors will donate the money to the IACFS/ME to help fund a future International conference! An important factor for winning the prize is the interest the topic generates around the world, based on article views and downloads, citations, and international reach. We can help by viewing/downloading articles, and encouraging others to do so, especially viewers outside the U.S. It also helps to post article links on Facebook or Twitter or Snapchat, retweet, and discuss in blogs and on Reddit. All these metrics are tracked and count toward the impact score.
For a complete list of papers with links, visit https://www.frontiersin.org/research-topics/7718/advances-in-mecfs-research-and-clinical-care#articles. This special issue was edited by Drs. Kenneth Friedman, Cindy Bateman, Alison Bested and Zaher Nahle.
Can you help with our activities? We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know through the Contact Us form on our website. Or join our next volunteer phone call on Saturday, November 2 at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS.
Leah Williams, Association President