Last Sunday night at the Ruskin Group Theatre in Santa Monica, California, a rapt audience got a rare view of what people with the little known ME/CFS disease go through. Now you can watch the video of this powerful performance and see for yourself.
I met 12 year old Liz Burlingame in 1980 back when I was 23 years old and didn’t like kids.
Smart, witty, humble – a little awkward, but a bright shining light with such a positive and endearing personality I couldn’t help but love Liz and make a rare exception to my “Children Not Invited” rule.
Liz read books and was interested in current events and liked to talk about them – all traits we shared. Liz was a nerd compared to her bouncy, athletic and popular sister, Lynn – which made her even more winsome to me.
But what sealed the deal for me was that Liz became the first fan of my fledging writing work – long before anything I wrote was worth the attention. Liz was interested in whatever screenplay or sitcom I was writing on spec or just talking about writing. Liz was rooting for me from the beginning and has never stopped being the supportive kid sister I always wished for.
The one subject I never thought I’d be writing about is the one I’m now sharing here about Liz being sick and mostly bedridden for the past 26 years with Chronic Fatigue Syndrome that struck her down like Thor’s hammer.
This is the story of how Liz has had her life from age 23 to 49 (which she is today), robbed from her by a disease that many doctors still deny is real, know almost nothing about and are doing almost nothing about.
In this heartbreaking piece Liz wrote just last month she says,
I live in Atlanta, a city of 5.8 million people, home to the CDC, and noted for its medical facilities, but there are so few doctors here that treat ME/CFS that most patients I know travel to South Carolina to consult a doctor there.
I want to grab disbelieving doctors by the lapels and shout, “A little help, please!” Modern medicine has dismissed Chronic Fatigue Syndrome possibly because the name sounded so negligible. It sounded far more like a complaint than what it really is.
CFS is a disease.