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 of an Advice for Newbies document Health Rising will place in its Resource section.
We’re asking for your help to assess the recommendations below and to add in your own in order to build a page that will provide some guidance for the newbies among us (and maybe some “oldies”) in making their way.