- Last Updated: 20 June 2021 20 June 2021
In this month's newsletter:
- Post-Pandemic Considerations for Forward Thinking Congregations, June 27
- CDC Draft Review of ME/CFS Treatments, Public Comments due August 16
- Announcing Nurse Patti's Blog!
- Fibromyalgia Research Study at Spaulding
- Long COVID News
- MassME Annual Meeting, October 23
- Support Groups in June
Zoom Event: Post-Pandemic Considerations for Forward Thinking Congregations, Sunday, June 27
Please join the Synagogue Council of Massachusetts on Sunday, June 27 at 10:00 AM (EDT) for a discussion on how to promote inclusivity post-pandemic using the adaptations made during the pandemic shutdown. Our very own Rebecca Redner and Rivka Solomon will be on the panel. Everyone, from any denomination, is welcome to attend. Learn more here and register here. This event is a follow-on to Rivka's outstanding essay in the Washington Post about engaging with her synagogue via Zoom during the pandemic.
CDC Requests Public Comment on Draft Review of ME/CFS Treatments
The US Centers for Disease Control and Prevention (CDC) has requested public comment on the draft of a review of treatments for ME/CFS. Sadly, the review relies on the deeply flawed and completely debunked studies that proposed graded exercise therapy (GET) and cognitive behavioral therapy (CBT) as "treatments" for ME/CFS. Happily, the CDC recognizes this is a problem and will not be updating treatment guidelines based on this review. You can read more here and here. #MEAction will hold a town hall meeting to discuss the review on Wednesday, June 23 at 3:00 PM (EDT) -- RSVP here. We encourage you to submit your comments on this review to the CDC. Click on the Comment button in the upper left corner of this page. The comment period ends August 16, 2021.
Announcing Nurse Patti's Blog!
We are delighted to announce that Patti Purcell, M.Ed. BSN, RN, will be writing a blog for our website on children and ME/CFS. She brings 30 years of experience, 26 years as a school nurse, to the topic. Check out her first two posts here.
Research Study at Spaulding on Treatments for Fibromyalgia
Do you suffer from pain due to Fibromyalgia? If you are between the ages of 18-65 and you have been experiencing this pain for at least 6 months, you may be eligible to participate in a research study at Spaulding Rehabilitation Hospital Network. This study is investigating whether a type of non-invasive brain stimulation called transcranial Direct Current Stimulation (tDCS) combined with physical exercise can change your pain perception.
Study visits will be conducted at Spaulding Rehabilitation Hospital or Research Institute in Charlestown, MA, and will require 22 visits over 4.5 months. Eligible participants may receive $15 per visit for their participation.
For more information, please see the website: https://rally.partners.org/study/fibro or contact the Neuromodulation Center by phone at 617-952-6158 or by email at MWHALEN7 at partners dot org.
[Editor's Note: Since this study involves aerobic exercise, it may not be appropriate for people who have both FM and ME/CFS.]
Long COVID News
We are watching the development of a large cohort of Long COVID sufferers with alarm and empathy. Many of them have symptoms that overlap directly with the symptoms of ME/CFS as discussed in this recent article, "Insights from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome May Help Unravel the Pathogenesis of Post-Acute COVID-19 Syndrome," by Anthony Komaroff and Ian Lipkin in Trends in Molecular Science.
We have joined the Long COVID Alliance and we are here to offer our support. Please see our web page on Long COVID here and use the Contact Us form if you would like assistance with finding a physician or applying for disability.
Save the Date: Annual Meeting, Saturday, October 23
MassME will hold our Annual Meeting on Saturday, October 23, 2021. We are delighted to announce that we will have presentations from researchers in the NIH-funded ME/CFS Collaborative Research Network. More details soon.
Support and Discussion Groups on Zoom!
Research Club: Neroplasticity, Sunday, June 20, 2021 5:00 PM (EDT). Register here: https://us02web.zoom.us/meeting/register/tZctf-yorTIpG9Vr83ThWNArnA-QD8ryKYhc
The Research Club presents Michael Zigmond, PhD, emeritus Professor of Neurology, the University of Pittsburgh. Neuroplasticity refers to the ability of the nervous system to adapt to changes in the internal and external environment. It is, for example, the basis of recovery from injury and the ability to learn. He will give a general overview and also briefly discuss how neuroplasticity may be relevant to the process of gradually increasing the capacity of individuals suffering from ME/CFS and FM. There will be time for Q&A after the presentation.
The DIY Club: Microbiome Matters, Sunday, June 27, 2021 5:00 PM (EDT). Register here: https://us02web.zoom.us/meeting/register/tZIvce-grTgsHtDen_YnupzQ9_9TZgdu88jO
Microbiome Matters: What is the microbiome? What is the gut microbiome? What implications does it have for people with ME/CFS & FM? If we improve our gut microbiome, might it help improve our health? There will be time for Q&A after the presentation.
Summer Break: Support and discussion groups will be taking a summer break in July and August. See you in September.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
Volunteer with Us!
Do you have web skills? Can you edit a video? Do you have fundraising experience? Do you want to help plan our next event? We have lots of projects and even if you only have an hour or two a month, we would love your help. Contact Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org, or use the Contact Us form to get in touch.