As you may know, I am in the process of recruiting subjects for a documentary film on ME/CFS. It's been an interesting experience, speaking with many patients and hearing their stories. I've never met anyone in person with ME/CFS, and so being able to spend an hours on the phone talking to others has been wonderful. It's also given me a sense of the incredible heterogeneity of folks who fall or are put into this group, and all of the problems associated with the shitty name (at least in the US) and vague diagnostic criteria. Some subset of people who write to me about their illness say their primary symptom is sleeping all of the time, or having to sleep unusually long amounts of time at night. They are clearly struggling with their health, but have nothing that looks like the illness I have. Before I dismiss that symptom out of hand, I wonder if anyone else here feels sleepy AND has the multi-system symptoms described in the Candian or International Consensus Criteria? My illness has never made me feel sleepy. It might look like "fatigue" to a person walking into my room, because I am laying in bed all day. But generally, I'm laying in bed because my POTS is acting up, and my heart rate will go up when I sit up or stand, which yes, is tiring, but not remotely in the common sense of the words "tired," "fatigued."