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We're asking #pwME (myalgic encephalomyelitis/chronic fatigue syndrome) to share their personal stories this #MillionsMissing. Here is mine. (Long THREAD)
When I was in later childhood, my mom caught mono in the early 1990s. If you've ever had mono, remember how it made your body feel. Now picture it also getting gradually worse over time; that was my mother's body. Every day. #MillionsMissing #pwME (2/15)
Multiple food intolerances and difficulty digesting is common for people with ME/CFS. My mom couldn't keep weight on, because she couldn't keep anything down. At her lowest, she weighed 87-lbs. She is 5'5", like me. Her liver began to fail. (3/15) #MillionsMissing #pwME
She went to several doctors. Weight loss, immune deficiency, liver issues -- they all tested her for HIV. When she protested she'd been tested for HIV over and over again, they'd pull sympathetic faces and explain that sometimes it took awhile before you'd get a positive. 4/15
At that point, New Yorkers were calling ME/CFS "yuppie flu". Even the other elementary school kids speculated that "CFS" was overwork, or imaginary. It was what they were all hearing at home. It was what was in the newspaper articles they had to write about for social studies. 5
Finally, a doctor put my mom's symptoms into one of the first big medical databases. Out popped "post-EBV syndrome, relapsing-remitting". He looked up potential treatments and shot her full of B vitamins, which didn't cure anything, but kept her going so she didn't lose her job.6
He then sent her to a nutritionist, who cut out all common allergens. She was down to veggies and rice, but it was a miracle to be able to eat again. She began to regain her strength. But she is still ill: 'chronic' means 'forever'. (7/15) #MillionsMissing #pwME
I had two sisters. Two out of three of us also went on to develop ME -- not at the same time. At the same age. Now, my niece has started to report early symptoms in HER twenties... (8/15) #MillionsMissing #pwME
But the kicker came when my best friend from childhood -- who I had not seen in three years -- began to explain that a mystery disease had struck her. That when she stood up, her heart pounded and she grew dizzy. Hello, #POTS. She was flummoxed that I recognized it. (9/15)
A high percentage of #pwME also have #POTS. When she went on to describe classical PEM symptoms, the hallmark of ME, I suggested she see one of our few expert clinicians. She was officially diagnosed with #MEcfs just weeks ago. (10/15) #MillionsMissing #pwME
On today's #MillionsMissing call, I said, "ME has stolen the women I love". But who is this thief? Childhood exposures? Genetic susceptibility? (My friend and I have similar ancestry.) The thing is? We still. Don't. Know. (11/15) #pwME
We've been waiting on equitable funding from NIH and CDC for decades. Despite low QOL, we're invisible to the institutions that were supposed to support us. I'm burdened thinking my generation is going to pass this problem on to the next. (12/15) #MillionsMissing #pwME
I can't hand this to my niece and tell her to do her best and struggle through. I can't hold my friend through a seizure and tell her that patience is a virtue. We have BEEN patient. (13/15) #MillionsMissing #pwME
This is a personal story, but how many have the symptoms of #MEcfs and don't even know what's wrong? And cases are often initiated by infection -- how many more will COVID-19 leave behind? (14/15) #MillionsMissing #pwME
We expect a boom of new cases, post-COVID-19. This is how inequality comes home to roost in disability politics: when you ignore the needs of a community that's constantly in open enrollment, it can bite you in the end. (15/15) #MillionsMissing #pwME
I had an ME doctor that gave me some good starter advice. The rest is from other patients and my own research. I currently have no clinician. I'd love to continue seeing an ME-literate doctor, but as my mother's mother used to say, "there's people in hell wantin' ice water too."
