“ME/CFS […] robs people of the most productive years of their lives, it causes immunological dysfunction, profound fatigue, cognitive dysfunction. It really destroys peoples’ lives. It is underappreciated, it is underfunded, and with your support we hope to find solutions to this crippling problem”. Ian Lipkin, M.D. Center for infection and Immunity, Columbia University.
The Stair Challenge to Raise Awareness and Funds for Myalgic Encephalomyelitis /Chronic Fatigue Syndrome
The illness commonly known as ME or “Chronic Fatigue Syndrome” (CFS) has had little research (some of it very bad science) tiny funding for it, and still has no diagnostic test or treatment. People with it are waiting, often debilitated, with lives curtailed, hoping they might resume some of what they once could do.
There are a few excellent researchers, some have done good studies that need replication, some have well designed important studies that need money to proceed. A potentially very useful study, for discovery of microbes, using immunology and big data, to be done at Columbia University now needs $5 million. NIH has funded only enough to recruit and take samples from subjects and healthy controls. To raise what the researchers need, a crowd funding effort is underway to raise the $5 million. See: http://microbediscovery.org/
This Stair Challenge Project is to raise awareness of the illness and funds for that research, we are working with the Microbe Discovery crowd funding effort and all funds raised are to go directly to the study at Columbia.
(To see more about that study, in lay terms, see: http://microbediscovery.org/microbial-discovery-immunity-study/ To see more from the Center working on the study, see: https://www.mailman.columbia.edu/research/center-infection-and-immunity/chronic-diseases-microbiome Their published papers and info on current studies are available on the site.)
1) If Healthy* — Run (or walk, as able) up and down stadium steps, as many sections as you can, to exhaustion. Take a video or photo of the last few steps, stopping, and initial recovery. Imagine for a few moments, that you could not recover — you would constantly feel weak, shaky, exhausted, as you do at the end. Most with ME/CFS cannot recover as a healthy person would, from the usual, not challenging exertion.
Those unable to do stadia, may do stairs in a bldg or house. Those unable to do stairs at all, may choose something else, e.g., Run or bicycle up hills, etc.. But, if you are otherwise healthy, try to make it wearing.
*If you are not healthy, sit in a chair or bed, send a donation, and post something to challenge friends, especially healthy friends.
2) After the exertion, go to the link on the “Donations” page and make a gift by credit card or check, for as much as you can, to fund research for people who do feel this way much of the time, without even doing any stairs.
3) Post your video (FB, incl the Stair Challenge FB page: https://www.facebook.com/StairChallenge/ , Twitter, U-Tube, etc..) and tag 3 or more friends you want to join the challenge. You may say how many stadia you ran, how many dollars you gave, or not. Up to you.
Rules? What Rules? —
We are not rule bound. If you want to make rules — that’s up to you –ideas for those who like rules:
A) A dollar for each step, $100 for a section, $500 for a Tour de Stadium.
B) Or doing a Tour within a given time — double your gift if you cannot beat the time.
C) Race a friend and bet on who wins — send proceeds to research.
D) Ask friends to “sponsor” your challenge and donate directly or give you donations to send in.
Be Sure to Post your photos on FB or Twitter, etc.. https://www.facebook.com/StairChallenge/ For more info on the illness and the work, Please see pages with the illness case definition, and info about the Study at Columbia.
BTW, We think this sort of fundraising should be unnecessary. We think NIH and foundations should fund research. But, it’s not happening in a significant way. Those who are ill are waiting and not as functional as they want or could be. It is a waste.