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Posts by Stephanie Griffin

Raising Awareness for ME/CFS in Petaluma, California

Dr. Bateman traveled to Petaluma, California for a ME/CFS benefit concert on October 5, 2019. This benefit concert featuring singer-songwriter, Marian Call, was designed to entertain, inform, and raise awareness for this debilitating disease. Marian Call’s sound is clever and unique, by turns humorous and heartbreaking; the perfect fit for an audience comprised of those…

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Coping with Chronic Illness with Pema Chödrön

Pema Chödrön is an American Tibetan Buddhist. Pema has led extensive discussions on working with chronic illness, specifically ME/CFS.  A generous and anonymous donor has secured permission to share this video clip with our community to assist patients with this helpful coping discussion.

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We See You. You are Not Missing to Us.

On May 12th, individuals around the globe will be celebrating International ME/CFS and Fibromyalgia Awareness Day.  The May 12th date was chosen because it is Florence Nightingale’s birthday and she was believed to have suffered from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a chronic disabling multi-system illness that remains misunderstood, underfunded in research, and even trivialized by some today.

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What’s Next for the ME/CFS Clinician Coalition?

On March 15-16, leading ME/CFS clinicians from across the United States gathered in Salt Lake City for the second annual ME/CFS Expert Clinician Summit. The goal of this summit was to grow the collaborative network of disease experts, identify ways to expand their ranks and improve the clinical care of patients with ME/CFS, and accelerate…

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ME/CFS Clinicians Reconvene in Salt Lake City

Leading U.S. ME/CFS experts will convene for the Second Annual ME/CFS Clinician Summit on March 15-16 in Salt Lake City, Utah. This event is significant because it marks progress and forward momentum for this dedicated group as they tackle the ambitious goal of mainstreaming ME/CFS in the medical community and improving the clinical care of people…

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A 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…

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Utah 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.

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“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…

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Keeping 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.

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When 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.

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