ME/CFS
CFSAC Education Workgroups Seeking Patient Input
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…
Read MoreDream Teams Assemble to Advance Research
“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…
Read MoreNot 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…
Read MoreMay 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…
Read MoreLiving 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…
Read More4 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…
Read MoreTips 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…
Read MoreHelp 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…
Read MoreDifferences 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…
Read MoreNovel 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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