- Last Updated: 19 February 2021 19 February 2021
In this month's newsletter: a new publication, the January/February Art Share, video from the book event, announcements about the Interagency Working Group on ME/CFS meeting and Advocacy Day, three research studies seeking participants, and support groups. Read on for details.
New Publication by MassME Authors!
Our very own Leah Williams, Past President, and Carol Isaacson-Barash, former Board Member, have published an article called "Three Cases of Severe ME/CFS in Adults" in the journal Healthcare as part of the Special Issue ME/CFS – the Severely and Very Severely Affected. All three cases are members of our MassME community and we greatly appreciate their sharing their stories.
January/February Volunteer Art Share
Check out this fantastic art by members of our community! If you would like to share an original poem, essay, photo, drawing, painting, piece of fabric art, etc., please send an email to Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
Book Event for The Puzzle Solver by Tracie White and Ron Davis
The book event for "The Puzzle Solver" last Friday was a great success with more than 270 people joining from around the world. Tracie White, Ronald Davis, Janet Dafoe, Rivka Solomon and Kathy Detwiler had an excellent discussion. If you missed it live, you can watch the video here. Order your copy of "The Puzzle Solver" from Buttonwood Books and Toys, a small independent bookstore in Massachusetts and friend of MassME. Or order the audio version here.
Mark Your Calendar: Interagency Working Group on ME/CFS Meeting, February 25 and 26
The second Interagency Working Group on ME/CFS meeting will take place on Thursday, February 25th (1:00-5:00 PM ET) and Friday, February 26th (1:00-3:00 PM). The topic is workforce development and education of ME/CFS healthcare providers and updates on activities to address long COVID. MassME, jointly with Solve M.E., #MEAction and the New Jersey ME/CFS Association, will present on barriers to accessing healthcare for people with ME/CFS. The public is welcome to attend. Register here: https://cdc.zoomgov.com/webinar/register/WN_E-Cd1WZSThuXBM5OqZdKCw
Mark Your Calendar: Advocacy Day, Tuesday, April 20!
Advocacy Day, organized by Solve M.E., will be virtual again this year. This is your chance to advocate on Capitol Hill in Washington, DC. Phone meetings with US Senators and Representatives will be on Tuesday, April 20th, 2021. Register for a meeting here and check out the schedule for the whole week here. Last year Massachusetts had a great showing with 28 advocates joining the meetings. Please let us know if you are from Massachusetts and register this year, particularly if you are a constituent of Reps. Moulton, Lynch, Keating or Trahan. Send an email to Bob Robitaille, our Legislative Coordinator, at advocacy at massmecfs dot org.
Research Studies Seeking Participants
Research Study on COVID Long Haulers with Drs. Liisa Selin and Anna Gil, UMass Medical School. Seeking blood samples from 30 COVID Long Haulers, only those who have tested positive, for this research project related to T cell anomalies. The following is a description of their research with ME/CFS patients, now expanded to include Long COVID patients: https://solvecfs.org/liisa-selin-and-anna-gil/. Contact: Anna dot Gil at umassmed dot edu.
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.
Support Groups on Zoom!
If you would like to attend a support group meeting, please use the Contact Us form to let us know.
Open Discussion Support Group: Saturday, February 20, 11:00 AM (EST).
Research Club: Sunday, February 21, 5:00 PM (EST). Roshan Kumar, PhD, will present on how vaccines work.
DIY Club: Sunday, February 28, 5:00 PM (EST). Join our ongoing discussion of how to use a systematic approach to improve our physical well-being.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
You Can Help Us!
Seeking Long COVID Volunteers: Due to the many overlapping symptoms between ME/CFS and Long COVID, we are seeking Long Haulers who may be open to joining our advocacy efforts (e.g., sharing their experiences at public events, in medical education programs and with Congressional staffers). Not a Long Hauler? We would still love your help! Contact Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
Support our Work! We welcome financial donations to help us support people with ME/CFS and FM, and now Long COVID. All of our funding comes from individual donations and any amount will help. Please support us by becoming a member or donating now!