A monthly speaker series on a wide variety of topics

Please join us on the 3rd Sunday of each month at 4:00 P.M. ET on Zoom

Free and open to everyone

Special Edition: Small Group Conversations

Summer is a time for informal gatherings and socializing. Let's get to know one another, and have a chance to ask questions and share experiences. Join MassME for a Special Edition of Sunday Conversations! We are looking forward to meeting you "in person"!

We will gather together in small groups for conversations about topics of interest to our community. Tentative topics (depending on interest) are:

• Pacing and energy management
• Coping with chronic illness
• Disability and social services support
• Relationships with family and friends
• Seniors/aging with chronic illness
• Young adults (20's and 30's)
• Children and adolescents
• Caregivers/partners
• Parents

Missed a past Sunday Conversations presentation?

Videos, slides, and other resources from past events are available on the
Sunday Conversations Page.

Free Monthly Online ME/CFS and Fibromyalgia Yoga Class 

Adaptive yoga that bends to you!

Join Nourish Theraputic Yoga on the first Saturday of every month at 1:00 P.M. EST for a free monthly online yoga class specifically for the ME/CFS and FM community. 

Special message from Shannon, Certified Yoga Teacher: 
Like many of you, I have been managing ME/CFS for many years. Over this time, I attempted various activities only to find that they were simply not manageable. Sadly, I discovered this experience was also very common for those within our community, so I decided to develop Nourish Therapeutic Yoga for us!

This unique, mind-body approach empowers those with chronic illness to safely build resilience, strength, and well–being while respecting limitations. All classes are adapted to those with ME/CFS/FM and are gentle and slow-paced. Instruction is invitational and relaxation with breathing exercises are integrated throughout, effectively lowering stress and anxiety. Rest breaks are encouraged, empowering you to always go at your own pace and all poses can be done lying down or seated.

NIH ME/CFS telebriefing on August 26, 2022

NIH’s next ME/CFS telebriefing will be held on August 26, 2022 from 3:00 – 4:00 pm EST. The telebriefing will include updates from NIH on ME/CFS-related research activities and a presentation by Lily Chu, MD, MSHS, Vice President of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), on highlights from the IACFS/ME 2022 Virtual Medical and Scientific Conference.

No pre-registration is needed. Join the webinar or dial 669 254 5252 US (toll free), Meeting ID: 1609957505.

Invisible Disabilities Art Exhibit
featuring MassME member Linda M. Morgenstern

As a follow up to last month's announcment, we would like to congratulate Linda Morgenstern on her succesfful art exhibit. We are grateful to Linda who has generously donated the profits of the sale of two of her art pieces to MassME!

Read a review from the Boston Globe and more about Linda's moving story.

ME/CFS Podcast Episode

Freakonomics, M.D. did a podcast to discuss ME/CFS. The episode "Could Long Covid Help Treat Other Chronic Illnesses?" includes interviews of Dr. Tony Komaroff (Harvard), Dr. Ron Davis (Stanford), Winston (an individual with ME/CFS) and Vicky Whittemore (NINDS) and has just been released. You can listen and find the transcript on their website, or download on Apple Podcasts, Spotify, Stitcher, or wherever you get your podcasts. They will be posting the episode on their Twitter, Facebook, LinkedIn, and Instagram pages throughout the week.

Take the 2022 National Survey on Health and Disability

The University of Kansas is conducting the National Survey on Health and Disability for the 4th year. We believe that the only way to change policies and improve the lives of people with disabilities and/or chronic health conditions is to ask people like you directly about your experiences. Any adult in the US over the age of 18 with any type of disability, mental illness or chronic health condition is encouraged to complete the survey. The survey is open until Friday, September 2, 2022.

New Pediatric Pacing Guide from MEAction

#MEAction has just released a new guide for pacing geared for young people with ME/CFS and Long Covid with tips for pacing and school accommodations. This is a companion to their Pacing and Management Guide for adults.

RECOVER Research Review (R3) Seminar Updates

New recordings and transcripts for the R3 Seminar series are now available in the “Videos and Presentations” section of the RECOVER News & Events page.

The goal of the R3 Seminar series is to catalyze a shared understanding of the research of the scientific stakeholder community within the RECOVER Consortium. Upcoming R3 Seminars in the ongoing series include:

• August 9, 2022 ─ Clinical Spectrum of PASC: Focus on Mental Health

• August 23, 2022 ─ Clinical Spectrum of PASC: Focus on Sleep

• September 13, 2022 ─ Clinical Spectrum of PASC: Focus on Coagulopathies

Try the RootFinder Assessment Tool for free!
 

As a follow-up to our Sunday Conversations on Functional Medicine, Dr. Andrew Lenhardt, of Complex Health Solutions, in Beverly, MA has offered our readers the opportunity to use his RootFinder Assessment at no cost. His purpose is to collect data on the incidence of different root causes in a self-identified ME population. While the analysis you receive will be specific to you, the data will be anonymized by Dr. Lenhardt.

Visit the Complex Health Solutions Questionnaire Page and use the promo code ME/CFS to run the analysis for free.

It takes about 10-15 minutes and when it asks for your predominant health problem, you should choose Chronic Fatigue Syndrome. When you complete the process, the predictions will be sent immediately to the email you provide. You will not be asked for any other identifying information and this information will not be used for any marketing campaigns.

Save the Date
National Health Research Forum September 19-20, 2022

Join Research!America for the 2022 National Health Research Forum, Straight Talk: Then, Now, Imagine. This two-day, virtual forum is designed to engage our audience in discussions with top federal officials, research leaders, and distinguished national media as we explore health and R&D-related issues that are vital to the wellbeing of our nation, our economy, and patients in the U.S. and across the globe. Join us and connect using virtual networking tools! There is no cost for registration.

Want to Get Involved?

We do great things by working together! Even if you only have a few hours to give, you can play an important role as a volunteer.

We have a variety of volunteer opportunities for you to share your unique talents. Visit our Volunteer Page for more information.