Accelerating ME/CFS Research Through Brain Donation
So often, people with ME/CFS are told to “get over it” since “it’s all in your head.” While this is devastatingly inaccurate, there is an unintended glimmer of truth here – the brain plays an important role in ME/CFS. According to Research Director Suzanne Vernon, “The brain is the command and control center. There is…
Read MoreProgress in ME/CFS Subset Identification
When it comes to biomarker discovery and clinical trials, disease heterogeneity is the bane of clinical researchers existence. I am showing my age here, but think of it like static on the radio: too much noisy static makes it hard to hear the nice music sound and when you tune in, the signal is loud…
Read MoreA Consensus-Driven ME/CFS Clinician Coalition Takes Shape
On March 2-3, 2018, the Bateman Horne Center hosted an exciting summit of leading U.S. ME/CFS clinicians who came together to share their pearls of wisdom on diagnosis and treatment in order to improve ME/CFS clinical care and refine more precise research targets. The meeting was remarkable for the ambitious nature of the agenda, the enthusiastic…
Read MoreDr. Bateman Summarizes the ME/CFS Clinicians’ Summit
When Dr. Lucinda Bateman attended an ME/CFS research symposium recently, she had no idea of the challenge she would face. At the conclusion of the symposium, Dr. Ron Davis, a leading researcher in the ME/CFS field, challenged her to hold a similar ME/CFS summit for clinicians. Dr. Bateman isn’t one to back down from any…
Read MoreUtah Jazz & Mountain America Credit Union “Pass It Along” to BHC
“Our entire team at Bateman Horne Center wishes to sincerely thank the Utah Jazz and Mountain America Credit Union organizations for this meaningful and important gift,” said Rob Ence, Executive Director of Bateman Horne Center. “We appreciate the faith and support of those who were part of the selection process and will apply these resources effectively in our cutting edge research and clinical care with the quest of improving the lives of those with ME/CFS and FM.
Read More“Unrest” Panel Discussion
Jen Brea’s movie, Unrest, is bringing attention to the struggles that people with ME/CFS face. This award-winning film is available on Netflix, Amazon, and your local PBS station, and if you haven’t seen it yet, block out some time to take a look. Jen turns an unflinching camera on her life and the lives of…
Read More“Normal Town” by Rebecca Adams
One morning three years ago, I woke up early determined to do something “that normal, healthy” people do. I donned a t-shirt and sweats, went to the gym, and jogged on the treadmill for 20 minutes. No big deal, right? Think again. The aftermath of my 20 minute stay in “Normal Town” earned me a…
Read MoreKeeping Spirits Bright: Managing the Post-Holiday Letdown
Some people, especially those with chronic disease, experience depression and/or seasonal affective disorder (SAD) after the holidays are over. Dr. Stuart Drescher, a psychologist experienced in working with patients with chronic diseases including ME/CFS and Fibromyalgia, gives tips on how to manage the letdown that often occurs in January and February, when the holidays are over and the days seem dark and dreary.
Read MoreWhen Mommy Can’t Dance: How to Be a Chronically Ill Mom
It’s a hard to be a sick mom. For most mothers, a few days of illness may mean a back-up of laundry and a night or two of frozen pizza or cold cereal for dinner. For those of us moms that are chronically ill, it’s a whole other ball game. Certainly we have to adapt, get creative, and employ as many mom hacks as we can (i.e. Amazon prime, grocery pick up, self-serve kid snacks, and yes, we still have an above average number of cereal dinners). Beyond the physical demands and limitations, however, are the mental and emotional obstacles that we face. The mom guilt is present enough when you are healthy; it can be even more crushing when you are not.
Read MoreOurs Is Not a Caravan of Despair: Finding Hope
Dr. Elizabeth Sherlock has watched many family members suffer with ME/CFS throughout the past several decades. In this moving and poetical presentation, she shares what she and her family learned through these experiences and gives ideas on how to find your true self.
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