The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)
“I’ve worked long enough in public health to know that departments of public health are supposed to respond to disease,” says #MEAction activist, Terri Wilder, who was diagnosed with ME in 2016. “But there was nothing about my disease.”
Wilder, who has good relationships with employees at the New York Department of Health, asked to be put in contact with the right people in 2016. The following year she was given the green light to begin work and was assigned a staffer to facilitate the project. She collaborated with activist Mary Dimmock, whose son has been sick with ME since 2010.
“I want my son to have a life back,” says Dimmock. “I was shocked to see what’s happened in this field for 30 years, with all the mischaracterization of the disease and the treatment of patients.”
That type of pervasive mischaracterization meant that the two needed to write a Myalgic Encephalomyelitis 101, offering information that was basic but correct, and that would not perpetuate the harms inflicted on patients for decades.
“The information out in the medical community is wrong too often and inadequate at best,” says Dimmock. “The first thing is to do no harm: get them to stop recommending Cognitive Behavioral Therapy and Graded Exercise Therapy.”
Speaking weekly over the phone, they thought through all the people who might read the webpage, such as established ME patients, people who think they might have it, caregivers, family, medical providers, and public health officials.
“There’s a huge fishnet of people that could potentially land on this page. We had to think about health literacy levels, and we tried to do the best we could with all of this in mind,” says Wilder. Susan Levine, an ME specialist in NY, reviewed a draft of the page for accuracy.
The New York #MEAction group provided input on what information they thought should be included. They knew they wanted a solid definition of what the disease is, that it is not a mental illness, and a strong statement about the dangers of CBT and GET. The web page includes a list of symptoms and outside resources.
Wilder adds that this is a “live” document, one that they plan to update periodically when appropriate.
“It’s about getting people to understand that this is a public health issue and a social justice issue,” says Wilder. “It’s the duty of departments of health to make sure there is information out there about public health issues.”
The two are grateful for the consistent support they received from the New York State Health Department, including State Health Commissioner, Dr. Howard Zucker, who gave the opening remarks at a local screening of Unrest.
“I encourage anyone to show up to events that your own state department of health is sponsoring, even if it doesn’t have anything to do with ME, just so you can start meeting people,” adds Wilder. “It’s all about relationships.”