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Patient Voice

“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…

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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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Pass 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…

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What I Learned from the NASA 10-Minute Lean Test

What I Learned from my NASA 10-Minute Lean Test

Written by a patient who participated in a BHC research study to validate a new protocol used to assess orthostatic intolerance. Here she shares what she unexpectedly learned from her NASA 10-Minute Lean Test at BHC To be perfectly honest, when I decided to participate in the NASA Lean Test Research study at BHC, I…

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CFSAC Education Workgroups Seeking Patient Input

CFSAC Feedback Surveys

BHC has converted their questions into a simple online questionnaire The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services (HHS) through the Assistant Secretary for Health on issues related to myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). Administrative and management support for CFSAC is provided by…

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Patient Voice – Meditate to Find Peace

Meditate to Find Peace

Three years ago, Megan Hastings began most mornings with a quick run and some meditation. Today, the effects of her illness make running impossible, but she finds she can meditate to bring comfort and peace. The practice helps her to reduce stress, increase self-awareness, happiness and acceptance. Megan, mother to three and devotee to her best friend, has a…

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May 12 ME/CFS FM Awareness Day Celebrates 25 Years

May 12

On May 12th, individuals around the globe will be celebrating International ME/CFS and Fibromyalgia Awareness Day and 2017 marks the 25th anniversary. The May 12th date was chosen because it is Florence Nightingale’s birthday and she was believed to have suffered from ME/CFS. Every year a number of events are held to celebrate and highlight May 12th…

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Patient Voice – Look For Surprises

Look for Surprises

Still reeling from her diagnosis, Nicole shares how three surprises took her down a path that led her to help, hope and BHC. Nicole Paolucci Rabanal is a wife, mother, friend and physical therapists from Steamboat Springs CO. Upon returning to health she looks forward to living her life fully again as a wife, mother,…

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Patient Voice – Being Heard

One of the most important things you can do for some one suffering from ME/CFS and Fibromyalgia is to be understanding, supportive and to listen. Just listening can be such a special gift to someone. Do you recall a time you really felt heard? Is there someone in your life who is a great support…

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Feedback Survey – We Want to Hear from You!

“Listening is being able to be changed by the other person.” –Alan Alda In 2015, the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER) came together to form the Bateman Horne Center (BHC). We envisioned a world where patients with ME/CFS and Fibromyalgia are readily diagnosed, effectively treated, and…

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