By Cort Johnson in Health Rising.
Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear. Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing abound. Unfortunately, ME/CFS and FM patients have come down with a disease with few validated treatments and lots and lots of suggested treatments – many of which are not likely to pan out. Often unsympathetic doctors add more stress to an already very stressful condition.
ME/CFS and FM specialists are rare. While some guidelines are present, most doctors haven’t read them. To an extent not seen in most illnesses, people with FM and particularly ME/CFS are on their own without advice from doctors how to proceed, trying in their fatigued, pain racked, cognitively impaired state to get better. Just what is a person new to these illnesses to do?
In 2015 Health Rising ran a blog titled “Given What You Now Know, What Would You Have Done Differently with Chronic Fatigue Syndrome (ME/CFS)” which received almost 100 comments. Three years later, we used the answers the community came up with then, added FM to the mix, and came up with a draft o
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