People are beginning to find ways to fundraise on the ground for Columbia CII. Our team were contacted about this new initiative that also endeavors to increase awareness of ME/CFS and get people outside our community involved. It could be just the sort of activity that many might be very keen to tackle…
How many of us remember the days of being able to exercise – and miss it dearly!
Millions of people at varying degrees of illness severity struggle to do physical things. Some people with ME/CFS barely have the strength to feed themselves or sit up in bed. So many struggle maintaining a sitting upright position for long, doing basic activities of daily living like showering, cooking, or going out to get groceries. This doesn’t take into account the cognitive difficulties and many other common symptoms. This new challenge, however, seeks to highlight a key problem with exertion and energy for people with ME/CFS, in a way that can also spark conversation about other difficulties so many with the illness face daily. A personal note on the website states:
This illness puts severe limits on activity, on life. While ill for decades, I still miss things I used be able to do that gave me joy. My overall health and energy varies over time, but I never feel well. Sometimes I might be bed-bound, even a phone call too much; sometimes I’m able to drive, do errands, and take easy walks. I spend a lot of time alone, sleeping and resting. Everything has an energy cost. I am financially limited and careful.
Things still change for me, in better and worse directions. I try to be patient and adapt. The best analogy is the constant feeling of being at high altitude. I feel weak, and as though I cannot get enough oxygen to utilize the energy I should have, and to physically and mentally function as I once did. I cannot recover from mental or physical work as I did when well.
The Stair Challenge is a way of furthering both awareness and research. I cannot actually run up stadium stairs, although I used to, but I made a donation. We need healthy friends to do this. I don’t know whether research will result in effective treatment in my lifetime. But, we need the research to be underway. I do know a lot of time has been wasted when good research could have been done. We need to raise funds that the NIH and others are not providing. Too much time has been wasted, and too many lives.
People love a challenge, many love to keep fit, there are a lot of people out there that like to do exercise activities for good causes and for fun! This could be a good ticket to getting many keen on doing the challenge, donating or fundraising – and finding out more about ME/CFS. Do you have family or friends that would be keen to take up the challenge for a good cause? Do you know a sports team or local society that would want to do this for fun?
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 stadium stairs may do stairs in a building 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 (Facebook, including the Stair Challenge FB page: https://www.facebook.com/StairChallenge/ , Twitter, YouTube, etc..) and tag 3 or more friends you want to join the challenge. You may say how many stadium steps 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/
So, it’s pretty clear folks there are no fixed rules here – but an excellent guide. You can even change the exercise activity, get creative, get asking people if they might do it! You can creatively use Facebook events or fundraising sites like JustGiving, crowdrise and gofundme to do “personal fundraising” for causes to help gain sponsoring.
We need your help, see HERE how you can help us to gain more funding for this phenomenal study at Columbia University Center for Infection and Immunity. We love hearing about your efforts to fundraise – please email at firstname.lastname@example.org if you are doing something to help raise funds.
We hope people will take up the Stair Challenge!