Fibromyalgia
NIH Announces Precision Medicine Initiative
Research tends to neglect ME/CFS and FM – until right now. Precision medicine is the emerging scientific idea that medical treatment can and should be maximally efficient by tailoring medicine and healthcare to individual circumstances. Current research studies, however, do not have the size and diversity necessary to produce enough statistical power for individualized treatments.…
Read MorePublic Awareness of ME/CFS : A Changing Story
Millions are missing. This tragically summarizes the status of research funding for ME/CFS and FM, the staggering financial blow to the economy as patients and caregivers decrease or withdraw their workforce involvement, and most importantly, the millions of people who are missing from communities all over the world due to these debilitating diseases. For decades,…
Read MoreNavigating the School System with Chronic Illness
School can be an exceptionally challenging struggle for students with ME/CFS and FM. This May, in our monthly education meeting, guest speaker Doctor Lane Valum shared crucial strategies for how to work with, instead of against, the school system in getting students the help and resources they need for academic success. IEP and 504 Plans…
Read MoreBuilding Communities of Understanding and Hope
“Loneliness has the same impact on mortality as smoking 15 cigarettes a day, making it even more dangerous than obesity,” reports Douglas Nemecek, MD, Chief Medical Officer of behavioral health in a major new study on loneliness that outlines the prevalence and significance of loneliness and social isolation, as well as a handful of coping…
Read MoreWe See You. You are Not Missing to Us.
On May 12th, individuals around the globe will be celebrating International ME/CFS and Fibromyalgia Awareness Day. The May 12th date was chosen because it is Florence Nightingale’s birthday and she was believed to have suffered from ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), a chronic disabling multi-system illness that remains misunderstood, underfunded in research, and even trivialized by some today.
Read MoreKeeping Spirits Bright: Managing the Post-Holiday Letdown
Some people, especially those with chronic disease, experience depression and/or seasonal affective disorder (SAD) after the holidays are over. Dr. Stuart Drescher, a psychologist experienced in working with patients with chronic diseases including ME/CFS and Fibromyalgia, gives tips on how to manage the letdown that often occurs in January and February, when the holidays are over and the days seem dark and dreary.
Read MoreWhen 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.
Read MoreBHC Program and Research Update
BHC’s mission is to empower patients, advance research, and improve clinical care. What is happening to further those goals? At the November education meeting, Dr. Lucinda Bateman and Dr. Suzanne Vernon shared updates on the programs BHC is developing to ensure that this mission is accomplished. Highlights include development of a patient education program to empower patients, a practitioner education program that will improve clinical care, and implementation of a major research grant to advance the search for biomarkers.
Read MoreME/CFS and Related Illness: Putting It All Together
Understanding how ME/CFS and Fibromyalgia are related to and affected by other illnesses is key in helping patients find relief from symptoms. At the BHC Education Meeting in October, Dr. Nathan Holladay gave a broad view of the key aspects of the various problems that can cause these diseases or make them worse, including infections, immune system issues, and mitochondrial, metabolic, and endocrine dysfunction. Making the connections between these illnesses can help doctors and patients decide on customized treatment methods rather than “one-size-fits-all” treatments.
Read MoreNutrition: How Food Choices Impact How You Feel
The Whole Sisters (Nan Jensen and Nicole Bangerter) shared their journey with chronic illnesses at the September education meeting. View this presentation to learn about how food choices can affect symptoms. Visit their website for ideas on healthy food choices. Nan and Nicole discuss the importance of organic choices, the “dirty dozen” and the “clean fifteen”. They share tactics to develop self awareness and guidelines for reducing symptom presentation including recipe ideas.
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