It's May 12, which means it's ME/CFS Awareness Day, #MillionsMissing Day, and time for my now-yearly blog post. (If you've somehow reached this page without knowing what ME/CFS is, go here.) The last time Ron and I performed was for a #MillionsMissing event in 2019. After that, the pandemic happened and everybody isolated. These days, most people are acting like it's over, but I'm currently living with somebody who's immunocompromised and thus still keeping semi-isolated. We haven't rehearsed since February 2020. What I've given up is likely temporary, and it's just a fraction of what people ..read more

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ME/CFS has been in the news a lot this year. In case you're unfamiliar, ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a chronic disease that involves debilitating pain, cognitive impairment, crushing exhaustion, and many other nasty symptoms. Sufferers also experience post-exertional morbidity, which means they feel worse following even light exertion and require an extended recovery period. Many people with ME/CFS are housebound or bedbound. Despite the severity of the disease, it isn't on most people's radar the way, say, breast cancer or multiple sclerosis are. At least n ..read more

2020 is shaping up to be an interesting year, huh. I haven't updated this blog since last August, mostly because blogging doesn't seem like much of a thing anymore, but lately because nothing is happening. The band hasn't rehearsed since everyone was advised to go into hiding. We have no gigs. No one has any gigs in the traditional sense. We're not set up to perform virtually. Setting us up to perform virtually seems like something I ought to look into, but between paid work (which I thankfully still have because I've freelanced since 2011), caregiving duties, and attempting to obtain basic n ..read more

May 12 was ME/CFS Awareness Day, which I failed to write about because I've been terrible about blogging this year. There were #MillionsMissing events all over the world to highlight how patients have been missing from their own lives because they suffer from a disease that makes them too sick to work, too sick to socialize, and in some cases, ultimately too sick to survive. Tucson's #MillionsMissing event happened on Saturday, May 11, at Monterey Court. Sonya Heller Ivey talked about her own experiences with the disease. She's recovered to the extent that she can occasionally leave the ho ..read more