In this month's newsletter: our new volunteer coordinator, our new webpage for Covid long haulers, a save the date for an event for Ron Davis' new book, two new research studies, and upcoming support groups. Read on for details.
We are excited to formally introduce our new volunteer coordinator, Loryn.
Loryn grew up in Massachusetts, lives just north of Manhattan, and is a person with ME. She is a sociologist and creative arts therapist and has jumped into her volunteer position with gusto. "As the Volunteer Coordinator I am looking forward to meeting and connecting with volunteers as we work together to improve the lives of all of us affected by ME/CFS and FM. In 2021, I am excited about finding creative ways of engaging volunteers and building new relationships in the community. The new Volunteer Art Share is one way of bringing volunteers and members together to share our mutual experiences. I truly believe that we all bring something unique to the Association and working together we can continue to build hope and support for those affected by this devastating illness."
If you are interested in learning more about our volunteer program, contact Loryn at volunteers at massmecfs dot org.
We are participating in the National Day of Service on Martin Luther King Day by launching a new page on our website to support people experiencing post-infectious fatiguing illnesses, such as "long COVID." The page will have information about ME/CFS and resources that might be useful for people experiencing symptoms weeks and months after contracting COVID-19. Watch for the page to launch at noon on Monday, January 18!
SAVE THE DATE: Friday, Feb. 12, 4:00 PM: Author Event for “The Puzzle Solver” by Tracie White & Ronald W. Davis, PhD
The Massachusetts ME/CFS & FM Association and Buttonwood Books and Toys welcome Tracie White, Ronald W. Davis, PhD and Janet Dafoe, PhD discussing “The Puzzle Solver: A Scientist’s Desperate Quest to Cure the Illness that Stole His Son.” The facilitator for the event is Rivka Solomon, our MassME event coordinator, and the host is Kathy Detwiler, Buttonwood owner and mother and caretaker of a son with ME/CFS for 19 years. Buttonwood will be donating 20% of book sales for “The Puzzle Solver” to the Open Medicine Foundation. Please visit the Buttonwood website at buttonwoodbooksandtoys.com to register for this event and/or to order your copy of “The Puzzle Solver.” To order the audio version, please click here. See the event flyer for more information.
Recently Congress dedicated a staggering $1.15 billion to studying long COVID, the lingering post-viral illness many are left with after COVID-19. Because of the many similarities between long COVID and ME/CFS symptoms, and because ME/CFS is often triggered by a viral illness, we expect this huge increase in funding for research, diagnostics and clinical trials will benefit the ME/CFS community. We are grateful to SolveME for leading this effort, and we were happy to have joined their coalition of organizations that pushed to make this happen. More info here.
Clinical Research Study on Sjögren’s with Dr. Athena Papas, Tufts School of Dental Medicine. This new study, LOUiSSe, is looking for individuals diagnosed with Primary Sjögren’s who have no other autoimmune disease such as lupus or rheumatologic condition (rheumatoid arthritis). Patients can be male or female and between the ages of 18 and 75 years of age. Patients will be able to continue taking their Plaquenil or steroids with some restrictions while in the study. The duration of the study is approximately 35 weeks. For more information, contact Joseph Cimmino at 617-636-3931 or joseph dot cimmino at tufts dot edu.
Dr. Nina Muirhead from Cardiff University in the UK announces a new international research study looking at the impact of ME/CFS on the quality of life of both patients and their family members. This is a short and simple online survey designed to be accessible to all adults 18+, including severely affected patients. There are two questionnaires in the survey, one for the patient and one for a life partner or family member. People with ME/CFS piloting the survey found each questionnaire only took about 5 minutes to complete. Please use the link: https://redcap.link/MECFSFamilyImpactStudy. Please share widely to encourage others to participate. The greater the reach of this survey, the more we can improve international understanding of how ME/CFS impacts patients and their family members.
Open Discussion Support Group: Sunday, January 17, 5:00 PM (EST).
New! Housing Support Group: Thursday, January 21, 7:00 PM (EST). Join us for a discussion about the pros and cons of subsidized housing and ways to resolve housing issues.
Research Club: Sunday, January 24, 5:00 PM (EST). Dr. Amy Proal will discuss a recent Harvard study on Alzheimer's disease and how the findings might inform ME/CFS research.
DIY Club: Sunday, January 31, 5:00 PM (EST). Join our ongoing discussion of how to use a systematic approach to improve our physical well-being.
Get registration information for any of these support groups through our Contact Us form.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
We need your help to continue supporting people with ME/CFS and FM in Massachusetts and beyond. We had a busy 2020 building our support group program and improving our provider referral process, among other projects, and we have big plans for 2021. You can read all the details here. All of our funding comes from individual donations and any amount will help. Please support us by becoming a member or donating now! If you have already donated, thank you.