Three Quarters of a Million Dollars for ME/CFS Research at Columbia University!
“ME/CFS is a global problem that we need to address – it 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.” Dr Ian Lipkin
We love how the Center for Infection and Immunity (CII) at Columbia tackle a challenge, including their ME/CFS research! And they did it again with the #ChilliMEchallenge. Drs Ian Lipkin and Mady Hornig went through every chilli on the Scofield heat scale, topping out with Habaneros, the chilli equivalent of a Tornado. Then the entire CII team responded with their own rapping version.
And this was never just about accepting a challenge though – these efforts were about backing and supporting a community and raising awareness. During the challenge they said according to the CDC over 4 million people are affected by ME/CFS in the US alone. These numbers are frightening. The Institute of Medicine report estimates up to 90% or so are undiagnosed!
The team didn’t just deliver a great performance, they also announced an extraordinarily generous anonymous donation of $500,000 that had been received, along with all the extraordinary donations from wonderful supporters!
The Patient fundraising total is now at $533,570. If you add in the initial crowdfund monies raised, that are being used for a study right now – the whole fundraising effort has now raised a whopping grand total of $754,282 from 1,412 donations!
This has come from patients all over the world! To say we are humbled by our community and so grateful for your donations is an understatement. The mind boggles about what could be possible if more people contribute to fundraising at large and we become the strength of our numbers. Let’s get to 2,000 donations, and aim for a million dollars!
It isn’t often that people come out to bat for ME/CFS like this. Renowned researchers from such a respected institution, literally going all out, putting themselves through serious discomfort to get behind the community. It was truly galvanising and made us feel supported, they will leave no stone unturned for funding in an effort to make scientific advances. They have already made significant advances and have only just begun – they are collaborating widely.
The CII team were in the background supporting Ian Lipkin and Mady Hornig’s challenge, but took a deep breath and stepped in front of a camera for their own Chilli challenge for ME/CFS. We wish to thank them all and especially Gilbert Smith AKA ‘Chilly G’ for a fabulous rap which began:
“From the Center for Infection and Immunity
In support of the of the CFS community”
Thank you all for making us feel like we can stand up and be counted and for your collective commitment!
Soon after this event, it was mentioned in the Washington Post, included in an open letter from Brian Vastag to NIH Director Dr Francis Collins, pleading for more resources for ME/CFS research. The letter concludes “At the very least, you could ensure that Dr. Lipkin doesn’t have to scorch his intestinal tract again just to drum up a few research dollars”.
We caught up with Nicola Lavin from the Chilli ME challenge team and asked ‘What was the best thing that the challenge was achieving?’ Her answer came fast and easy:
“The awareness it is raising and the ME community uniting and standing up to be heard – people feel they are really standing up to this illness and it’s given a lot of people hope! People who didn’t hear about ME before or thought it was just ‘fatigue’ saying ”oh my god – is this what you have to deal with?”.
The Chilli ME Challenge has had well over 200+ videos and some well-known names have taken it up, it has engaged families and friends and encouraged awareness and donations. It seems to have dusted off some cobwebs and created some camaraderie.
Invest in ME in the UK has got the challenge out to community festivals and events! If you’re too unwell for the challenge don’t feel pressured to participate. But healthy family or friends might do this in support and you certainly don’t have to go super hot with those chillis! There is a #berryMEchallenge for small children who want to join in the antics. Some with ME/CFS have used different foods. See more about the #ChilliMEchallenge
Help get the number of donations for CII higher! Great research will do the talking in this illness. How many more years? Research is needed now!