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Reprinted with the kind permission of Open Medicine Foundation.
By Kate Booker
Back in 2009, Australian Kate Booker was living in Cape Town and volunteering at a cheetah facility. The facility had live-in accommodation for the volunteers, and was pretty basic: no wi-fi and no TV.
This particular night was cold and wet and there wasn’t much to do. No-one can remember whose idea it was, but someone suggested dressing up with their undies on the outside.
Much laughter, lots of photos (and probably a bottle of wine or two) later, a fun and memorable night was had by all.
Fast forward to late 2014: the ALS ice bucket challenge had just been a massive viral and fundraising sensation and everyone was talking about it. ME/CFS is a notoriously poorly funded illness and raising funds for research often falls to patients’ families. The online ME/CFS communities were abuzz with “we should do something like that!” A lot of ideas were tossed around, but none seemed to really have the appeal that the ice-bucket challenge did, and most fizzled out pretty quickly.
At the same time, Kate remembered the “undies on the outside” night with the cheetah facility volunteers. It was fun, it was silly, it was easy to do, and Kate remembered how everyone there had immediately leapt at the idea and had loved taking photos. Could that be the basis of a challenge for ME/CFS?
So Kate reached out to small group of trusted friends from the ME/CFS community and asked them: was it a good idea? Would it work? Everyone thought it was great fun, and had loads of viral potential.
And so the Undies on the Outside team was formed and 18 months of behind the scenes work began. The team were all women, ranging in age from early 30s to over 60, and all suffered from ME/CFS to varying degrees. All had had professional careers they’d had to abandon and none were currently well enough to work. However the team had an impressive array of professional skills from which to draw, including banking and finance, psychology, and politics.
Most were house-bound to a large degree, and several were bedbound. One was so severely ill that she was unable to live independently, needed help with showering, and was unable to sit up for more than 15 minutes at a time. Nonetheless, armed with an iPad, she was able to work for a few minutes at a time, and used that time productively to chip away at the task.
Each devoted what small time and energy they could, even if only a few minutes at a time. Based in different countries and time zones, they formed a secret online task force and communicated via email and messaging, and sharing files on Dropbox. With minimal energy available, being highly organised was critical, as was a collaborative, “no ego” approach to work: if any one person was struggling, someone else would pick up her task and run with it.
The first task was to choose a charity. The challenge would be international, so the team short-listed five ME/CFS charities from three countries. They agreed the charity should be one focusing on robust scientific research towards a cure, and prepared a comprehensive analysis of the five. The choice became clear: Open Medicine Foundation’s End ME/CFS Project ticked every box, and with three Nobel laureates on their scientific advisory board, lead by respected geneticist Dr Ronald Davis, they certainly had the scientific credentials. Linda Tannenbaum, Executive Director of the OMF, was approached and was immediately enthusiastic about the idea, and the OMF have worked alongside the challenge team almost from the start.
A graphic designer volunteered to work pro bono and a logo was designed. A photographer friend offered to take professional studio shots. Models and a make-up artist all willingly donated their time. One of the team found a song (My Body by Young The Giant) which really captured the spirit of the struggle with ME/CFS (“My body tells me no / but I won’t quit ‘cause I want more”), and the band agreed to let the team use the song, at no charge, for the challenge.
Progress sometimes leapt ahead, and at other times slowed to a crawl, but continued slowly and surely. If there’s one thing ME/CFS teaches you, it’s patience, determination, and perseverance.
Finally, the team was ready for launch and the date 25 April 2016 was chosen to allow a few weeks to lead up to International ME/CFS Awareness Day on May 12. The challenge raised in excess of $5,000 within the first 5 days and the uptake has been swift and enthusiastic. The team suspect this is just the start of something very big.
Will 2016 be the year we all remember that we wore our undies on the outside, and ME/CFS finally received the research funding it so desperately needed for 17 million sufferers worldwide? I hope so.
Don’t wait to be nominated: do the challenge!
Take your photo, make your donation, post the photo to social media and cut & paste the following wording. Don't forget to nominate 3 people!
“I’m a Superhero and wearing my undies on the outside to end ME/CFS! I nominate X, Y and Z to do the #UndiesChallenge
HOW DO I DO THE CHALLENGE? (post your photo then copy & paste these instructions)
1. Take a photo or video wearing your undies on the outside
2. Donate $10 (USD) to the Open Medicine Foundation's End ME/CFS Project at bit.ly/UOTO1
3. Share the photo / video on social media using the hashtag #UndiesChallenge
4. Tag 3 other people. They have 24 hours!”
For more information, visit: www.undiesontheoutside.org