ME/CFS
“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.
Read MoreBHC Program and Research Update
BHC’s mission is to empower patients, advance research, and improve clinical care. What is happening to further those goals? At the November education meeting, Dr. Lucinda Bateman and Dr. Suzanne Vernon shared updates on the programs BHC is developing to ensure that this mission is accomplished. Highlights include development of a patient education program to empower patients, a practitioner education program that will improve clinical care, and implementation of a major research grant to advance the search for biomarkers.
Read MoreME/CFS and Related Illness: Putting It All Together
Understanding how ME/CFS and Fibromyalgia are related to and affected by other illnesses is key in helping patients find relief from symptoms. At the BHC Education Meeting in October, Dr. Nathan Holladay gave a broad view of the key aspects of the various problems that can cause these diseases or make them worse, including infections, immune system issues, and mitochondrial, metabolic, and endocrine dysfunction. Making the connections between these illnesses can help doctors and patients decide on customized treatment methods rather than “one-size-fits-all” treatments.
Read MoreDr. Derya Unutmaz Explains Collaborative Research Center “CRC” with BHC
Derya Unatmaz of Jackson Laboratories explains the partnership between Bateman Horne Center, Jackson Laboratory, and many other collaborators as part of our exciting new research. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating illness that afflicts up to two million individuals in the US and lacks both widely accepted therapies for its management as well…
Read MorePass or Fail? A Young Patient’s Perspective
Written by Brooklyn Ingram, a young person with ME/CFS, this blog post describes her refusal to be defined by a disease. Read more of her blog Future Dead Person here. We live in a culture that demands clearly defined roles for every individual. I see these roles in my own life, and I hope you see them…
Read MoreNIH Awards Announced for ME/CFS Research Centers, BHC Key Member of Research Teams
The National Institute of Health has awarded funding for ME/CFS Collaborative Research Centers and Data Coordinating Center to collaborative research teams that include the Bateman Horne Center of Salt Lake City, Utah (BHC). This funding represents the largest single investment in ME/CFS research in the last decade. BHC is a proud partner and collaborator on two of…
Read More