News
Sunday Conversations - May 15, 2022
- Details
- Last Updated: 31 May 2022 31 May 2022
"Fibromyalgia”
Presented by Paul Monach, M.D.
The presentation is specific to Fibromyalgia (FM), but many patients with chronic complex diseases have symptoms or also a diagnosis of FM.
Sunday, May 15, 2022, 4 p.m. ET
Paul Monach, M.D., is Chief of the Rheumatology Section in the Boston VA Healthcare System, and an Associate Professor at Harvard Medical School. He has a PhD in immunology and completed residency and a rheumatology fellowship at Brigham and Women’s Hospital (BWH) in Boston. He is a member of the Cooperative Studies Program Coordinating Center at Boston VA Healthcare System.
This is a virtual presentation via Zoom.
Video links:
Playlist: https://youtube.com/playlist?list=PLz31KwoUbYrE9Uk71UjIDLGy2v6QVjwcN
Full event: https://youtu.be/cJxJLs1zLWM
Part 1-Fibromyalgia overview: https://youtu.be/PXkznGEg0ak
Part 2-Patient voices: https://youtu.be/IIFwzB-1CJQ
Part 3-Q&A: https://youtu.be/Ej7Ozno4oHo
Resources:
Fibromyalgia Resources
FM Medications (arricle summary)
Exciting News! Big ME/CFS Research Grant
- Details
- Last Updated: 17 March 2021 17 March 2021
Massachusetts ME/CFS & FM Association is thrilled to announce that the NIH has awarded a $2.5 million grant to the two-woman UMass Medical School research team of Liisa Selin, MD, PhD, and Anna Gil, PhD, for their work on ME/CFS.
For more details, read the MassME press release.
MassME is pleased to have supported this research team over the years, including notifying our newsletter recipients that these innovative researchers had received the Ramsey award and needed blood donations. People responded enthusiastically, allowing Drs. Selin and Gil to move this necessary research forward.
Additionally, the UMass Medical School researchers met with our Research Club and shared their cutting-edge findings. You can view a video excerpt of that meeting, and the research is summarized on this poster. It is also exciting to us that this money is coming to a Massachusetts institution. After all, Massachusetts is a medical hub for the world, and it should also be that for ME/CFS. This grant builds on the research this team did with a seed grant from the Solve ME/CFS Initiative's Ramsay Program.
Thanks, Liisa Selin and Anna Gil, for all your hard work for our community!
Advances in our Understanding of ME/CFS and the Effects of Long COVID
- Details
- Last Updated: 22 September 2021 22 September 2021
Announcing Our 2021 Annual Meeting
Sunday Conversations - April 24, 2022
- Details
- Last Updated: 29 April 2022 29 April 2022
"Working with Your Healthcare Provider”
Presented by Alba Azola, M.D.
The presentation is relevant to ME/CFS, Fibromyalgia, Long Covid and Chronic Lyme Disease.
Sunday, April 24, 2022, 4 p.m. ET
Alba Azola, M.D., is Assistant Professor in the Department of Physical Medicine and Rehabilitation, Johns Hopkins University School of Medicine, and Co-director of the PMR Post-Acute COVID-19 Team (JH PACT) Program.
Dr. Azola presented the physician's perspective: how patients can prepare for their visit, especially the initial visit, in a way that is most helpful for the physician to focus on the most important information so that the patient can get the most help from a limited time with the provider. She also discussed issues that providers experience in working with complex, chronic illness.
"Dave" and "Sue", parents of a teen with ME/CFS, shared the story of their challenges in finding and working with numerous providers to try to get help for their child.
Moderator: Karin Dove, MassME Patient Services Volunteer
This is a virtual presentation via Zoom.
Links to video recordings:
Playlist: https://www.youtube.com/playlist?list=PLz31KwoUbYrGjlOUKA5Yz5dTMBKMDdolR
Full program: https://youtu.be/c7sACMrqsY0
Part 1 - Physician Perspective: https://youtu.be/5m1YadySvwA
Part 2 - Family Perspective: https://youtu.be/IFWMVNchb4g
Part 3 - Q&A: https://youtu.be/ZG3y_cBoVro
Resources for Working with your Healthcare Provider
Sunday Conversation - January 2022
- Details
- Last Updated: 25 February 2022 25 February 2022
January 2022: Physical/Occupational Therapy for ME/CFS and Similar Chronic Illnesses
Sunday, January 16, 4:00 - 5:00 ET via Zoom
Featuring Kenneth J. Friedman, Ph.D.
Adjunct Associate Professor of Medicine,
School of Osteopathic Medicine of Rowan University, Stratford, NJ
Discussants:
Alba Azola, MD
Assistant Professor
Co-director of the PMR Post-Acute COVID-19 Team (JH PACT) Program
Department of Physical Medicine and Rehabilitation
Johns Hopkins University School of Medicine
Amy Mooney, MS OTR/L
Licensed Occupational Therapist
Mom of a severely ill daughter with ME/CFS
The overlap of symptoms in ME/CFS, long-haul COVID, and other post-infectious illnesses suggests that the symptoms are not unique to the individual conditions. Rather, they represent a common response, most likely with similar underlying pathophysiologies. Guiding principles of patient management are then set forward for all healthcare providers including physical and occupational therapists.
Video of the full event
Playlist
Dr. Friedman video
Dr. Friedman's slides
Dr Azola video
Dr. Azola's slides
Amy Mooney video
Amy Mooney's slides
Dr. Friedman has contributed to three nationally-recognized primers on ME/CFS, written numerous articles about the disease in peer-reviewed journals, participated in the U.S. Department of Health’s Chronic Fatigue Syndrome Advisory Committee, and edited three medical journal issues focused on ME/CFS. His research suggests ME/CFS is one of many post-infectious illnesses with similar symptoms and pathophysiologies, and that advances in one illness could benefit others.
Dr. Azola offers her perspective as a clinician working with over 900 patients in a Long Covid clinic; 30 - 35% meet the criteria for ME/CFS.
Amy Mooney, MS OTR/L, offers her comments about the unique perspective and guidance that Occupational Therapy offers.
The Moderator for this event is Kerry Lang, LMHC, an expressive art therapist and the Wellness and Mental Health Program Manager at the Dean Center for Tick Borne Illness at Spaulding Rehabilitation Hospital in Boston, MA. She also leads support groups for Long Covid patients.