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ME/CFS

Not Without ME

A Research Update On May 3rd, at the monthly BHC Education Meeting, Linda Avey and Suzanne D. Vernon, PhD discussed their cutting-edge research collaboration. Linda described how her team is working together with the Bateman Horne Center to track data, chart experiences and find patient-generated answers using Precise.ly.  Suzanne shared the results of an ME/CFS…

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May 12 ME/CFS FM Awareness Day Celebrates 25 Years

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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Living With a Partner Who Has 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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4 Tips to Improve Doctor-Patient Communication

Effective doctor-patient communication is critical to building a therapeutic doctor-patient relationship, which is at the heart of delivering high-quality healthcare. When there is open and productive communication, doctors and patients are more effective in exchanging information, patients have greater comprehension of their medical issues, and they are more empowered in decision making about their own…

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Tips for Carepartners

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

  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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Novel Gene Variants in ME/CFS and Fibromyalgia

Presented by Alan R. Light, PhD. In February 2017, Dr. Light began a new NIH-funded research grant, Novel Gene Variants in ME/CFS and Fibromyalgia. This is a continuation of earlier work which discovered a number of novel variants in both chromosomal and mitochondrial genes that could contribute to the symptoms found in patients. This talk…

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What’s the Buzz – January 2017

Buzz – January 2017: We scoured the Internet to bring you a list of news articles, blogs and research publications we think you’ll find interesting for this month’s What’s the Buzz post.   On January 27th, the NIH made two big announcements of federal funding for ME/CFS collaborative research centers and Data Management and Coordinating Centers. While some feel the…

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Standardizing Measurement of ME/CFS Core Symptoms

Dr. Suzanne D. Vernon, BHC research liaison, explains how the IOM report defining the core symptoms of ME/CFS also define the BHC research roadmap. ________ At the October 2012 CFS Advisory Committee meeting Dr. Sandra Kweder, Deputy Director of the Office of New Drugs at the FDA stated, “When there is confusion, lack of consensus…

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