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Posts Tagged ‘ME/CFS’

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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NASA 10-Minute Lean Test

10 Minute Lean Test

A Simple Way to Assess Orthostatic Intolerance On June 7, 2017, at the monthly BHC Education Meeting, Pelle Wall, BHC Research Coordinator, reviewed the procedure and shared information about the research underway. Orthostatic intolerance (OI) is an umbrella term used to describe abnormal autonomic nervous system response to orthostatic challenge.  Orthostatic hypotension (OH), neurally mediated hypotension (NMH) [or…

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Dream Teams Assemble to Advance Research

Research Dream Team

“Advancing Research” is central to Bateman Horne Centers’ mission of empowering patients and improving clinical care for ME/CFS and FM.  The trick of course is figuring out the best way to advance research. This is a decision any organization targeting research into these complex conditions must wrestle with. At the 2016 IACFSME conference it was…

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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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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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Living With a Partner Who Has ME/CFS or FM

Partner with ME/CFS or FM

Chronic illness and marriage is a complicated combination. It’s rare to see  or hear a healthy spouse’s perspective on their partner’s disease because it is a topic that can be very difficult – as much for the one speaking as for the one hearing it. With an estimated divorce rate as high as 75% among…

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Tips for Carepartners

Carepartner Help and Support

When Someone You Love has ME/CFS or FM There are many diseases that can be considered invisible, but there are substantial differences in how individuals are viewed culturally and socially, depending on their diagnoses. Diabetes, lupus, MS, and others can be invisible illnesses, but few would ever question the limitations of someone with one of…

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Help Improve the CFSAC FAQ

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).   You can learn more about CFSAC by reading the committee charter  and reviewing past recommendations the committee has sent to the…

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Differences So Clear

differences so clear

  New Research Brings Clear Differences to Light in ME/CFS by Suzanne D. Vernon, PhD  |  BHC Research Liaison There is a great song in the musical RENT titled “Seasons of Love” in which they sing about the number of minutes in a year. As I am reviewing and writing this summary of the recent paper, “Epigenetic…

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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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