Trial By Error: May 12th-International ME Awareness Day

By David Tuller, DrPH

Saturday, May 12th, is International ME Awareness Day. (It’s also International Fibromyalgia Awareness Day, and the same for Gulf War Illness and Multiple Chemical Sensitivity. But here we’re mostly focused on the first.) This day in the calendar was adopted years ago as an opportunity to promote the visibility of neuro-immune diseases. It has more recently become known for the #MillionsMissing campaign, spearheaded by ME Action, with events planned in more than 100 cities around the world.

I’ll be stopping by an action in San Francisco. Here’s where you can find out what’s happening near you: https://my.meaction.net/calendars/millionsmissing

Here are some options for making your presence known virtually:
https://www.meaction.net/virtual-protest-2018/

And here’s an article about the campaign in the U.K. from the Bristol Cable, an online investigative journalism organization that has consistently provided decent coverage of ME/CFS and related issues involving research and policy.

By the way, May 12th is also the birthday of one of those missing millions, Alem Matthees, who won’t be able to attend an event. Alem is the bed-bound Perth patient whose health deteriorated sharply after his vigorous and successful battle to liberate the PACE trial data. He’ll be 38 years old tomorrow. (Or if it’s already May 12th in Australia, given the time change, then Alem is 38 there now. Does that make him already 38 in the U.S. as well, or do we have to wait until our own May 12th to say that?)

On Saturday, I will be thinking of Alem and many others unable to protest in person.

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