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Posts Tagged ‘Patient Voice’

Empowerment Through Preparation

Living with ME/CFS or fibromyalgia, important, energy consuming events can be absolutely overwhelming and impossible. In September’s education meeting, Linda Milne – a longtime patient and community member of the Bateman Horne Center – shares her knowledge about preparing for natural disasters, travel, and volunteering while living with chronic illness. Empowerment through Preparation  Medical complications…

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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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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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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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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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My Story in Art

story in art

When you are living with chronic illness like ME/CFS and Fibromyalgia, engaging in healthy grieving can be among the many challenges. You may face periods of shock and numbness, denial, anger, and intense emotional pain. Experts say it is essential that you engage your grief reaction and practice patience with yourself as you learn to express…

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