This month's newsletter brings you news about the collaborative research center in Boston, an invitation to an online mindfulness seminar, the availability of a print version of the Pediatric Primer, and links to videos of recent interviews with members of the ME/CFS community.
There was excitement and hope in the room during the public symposium on June 8th to announce the Open Medicine Foundation (OMF)-funded ME/CFS Collaborative Research Activities at MGH and the Harvard Affiliated Hospitals. Co-director Ronald G. Tompkins, MD, ScD, introduced the collaborative research center and described the major thrusts: research studies to understand biological and physiological disturbances in people with ME/CFS and close coordination with clinical care providers. He highlighted the large number of researchers and clinicians in the Boston area who are already working on ME/CFS or planning to start soon, a list of more than 30 prominent members of the scientific and medical community. In fact, a research symposium on the previous day was oversubscribed, indicating a high level of interest, and this collaborative research center will surely inspire even more.
The event continued with a panel by three clinicians, Dr. Donna Felsenstein, Dr. Anthony Komaroff and Dr. Amel Karaa, describing their experiences treating people with ME/CFS. They all emphasized how important the development of a diagnostic marker or test will be to reduce stigma and disbelief. They described the treatments they use for symptom relief, some of which can be very effective for some people. Then, we heard about a research study that is already going on in Dr. David Systrom's laboratory using the invasive Cardiopulmonary Excercise Test (iCPET) to determine a pattern of pre-load failure in people with ME/CFS. This has now developed into a collaboration with Dr. Michael vanElzakker in which he takes brain images before and after the iCPET to show the impact of post-exertional malaise on the brain. Preliminary data suggests a decrease in blood flow in certain regions of the brain after exercise.
Other presentations included Dr. Ron Davis speaking about activities at the OMF-funded Stanford Collaborative Research Center, Dr. Maureen Hanson talking about the impact of ME/CFS on the immune system, and Dr. Wenzhong Xiao, co-director of the Boston center, presenting his approach to the massive amounts of data that this center will generate. Overall, the event was a reason to feel optimistic that a new era of research and clinical care is starting in Boston.
Chris Armstrong, PhD, OMF Science Liaison, has provided a detailed summary of the Symposium and it is available here. OMF will be sharing a recording of the afternoon shortly.
Yasemin Yamodo-Isler is offering two mindfulness practise sessions for caregivers and parents on Thursday, June 27, 2019 from 11 am - 12 pm, and again from 6 pm - 7 pm. Join her online to learn practical tools for cultivating kind awareness, self-care and resilience. When we care for ourselves, we can offer better support for our loved ones and those in our care, without feeling depleted. You can register at http://www.tunedminds.com/online-events for the time slot of your preference. Fee is by donation. Yasemin is a Boston area parent, coach, mindfulness and compassion teacher.
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (Front. Pediatr., 19 June 2017) is now available for on-demand printing. The advantage of this monograph version is that it contains an index which will help the reader quickly access information. Also, as a bound book with a spine, it will neatly fit on the reference book shelf, be easily identified, and quickly pulled from the shelf. The monograph costs $9.72 to print. The retail price is set at $10.00. The profit goes to the Solve ME/CFS Initiative (SMCI). Order a copy here for yourself or your favorite pediatrician.
Massachusetts General Hospital published an article about ME/CFS in their magazine called Proto (tagline: Dispatches from the Frontiers of Medicine). MassME member Katie Hart and her story are featured in the introduction. The article describes symptoms and the disbelief faced by many people with ME/CFS, followed by a discussion of recent research, including the studies by Dr. Systrom and Dr. vanElzakker. It is well-written, accurate and will help raise awareness in the medical community in Boston.
The Solve ME/CFS Initiative (SMCI) will host a webinar on Disability Insurance for ME/CFS on July 25th, 1 - 2 pm. Disability Insurance Attorney Andrew Kantor will talk about navigating the employer-sponsored disability process for ME/CFS patients. You can register here.
The Open Medicine Foundation has been doing a series of interviews between Dr. Ron Tompkins and members of the ME/CFS community. You can find his interview with Rivka Solomon (MassME member and advocate, at the NIH conference in April) here and his interview with Dr. Alan Gurwitt (Chair of our Medical Advisory Committee, at the June 8th OMF event) here, plus many more on their Youtube channel.
LLewellyn King continues to post fascinating interviews on his Youtube channel, ME/CFS Alert. Recent episodes include Sadie Whittaker (Chief Scientific Officer, SMCI), Dr. Ron Tompkins (MGH) and David Tuller (Public Health Journalist at UC Berkeley).
Can you help with our activities? We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you would like to volunteer, please let us know, either by responding to this email or through the Contact Us form on our website. Or join our next volunteer phone call on Monday, August 12th at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome financial support for our work to improve health care and support services for people affected by ME/CFS.
Leah Williams, Association President