Where do I post my challenge videos?
(First of all, when you post PLEASE USE HASHTAG #chilliMEchallenge or else perhaps no one will ever find any kind of info or video you share.)
- YouTube channel – yours or comment the link on ours
- Our Facebook “page” or our Facebook “group”
- Your own Facebook timeline
- Twitter and tag @MECFS_Challenge Twitter
- E-mail your video to firstname.lastname@example.org (or other e-mails provide below in this FAQ)
- We’re on Instagram too 😉
What’s the main page I should share to promote the challenge?
Please remember to use the hashtag #chilliMEchallenge when posting to any kind of social media, especially your challenge videos! This is VERY important!
Here are images to use. Perhaps use the first one as your profile picture if you’d like and the second one to share information about the challenge. These are unique images we made (no copyright infringement).
Where do I donate?
Please click her for our donation information page:
Why Invest in ME and Columbia University research (Mady Hornig, MD, Ian Lipkin, MD, Jose G. Montoya, MD, and colleagues)?
For the UK division, we trust Invest in ME the most to use the funding appropriately. They are volunteer M.E. sufferers who most closely share our vision for biomedical research and have been quite supportive in our efforts.
For the US division, The Center for Infection and Immunity at Columbia University’s Mailman School of Public Health has published ground-breaking M.E./CFS biomedical research that most closely shares our vision to find the root cause of M.E/CFS, especially Mady Hornig, MD, and colleague’s 2015 Molecular Psychiatry studies.
Isn’t it dangerous to ask ill people to eat chili peppers?
And why spicy chili peppers as the object of the challenge?
There are 2 types of videos involved here: Healthy people being funny eating peppers and sick people sharing their ME/CFS story (can be a combination of the 2 or whatever you’d like). We are not asking ill people to do the challenge. We are asking ill people to request that their healthy friends and family do the video in their honor because the goal is not to raise funds or spread awareness to ourselves – otherwise we would have all raised the money ourselves already (although another goal is to give ill people HOPE!). However, if you would like to eat chili peppers and are ill, we are doing so too. The “4 Chilis in a Pod” despise spicy food and are doing the challenge any way to support M.E./CFS research. In lieu of chili peppers, you can take a little bit of a sweet bell pepper and it’d still raise awareness! Leave the hilarious videos to the funny people and your video can be the touching ones that make people want to donate!
(FYI- Health benefits of peppers: Cardiovascular, boost immunity, clear congestion, anti-cancer, stomach bacteria balance, diabetes, weight loss. And capsaicin, the chemical that makes peppers spicy, is used in capsaicin cream on localized chronic pain sites to kill the pain receptors.)
Brenda’s response: “If you go to our Facebook page (https://www.facebook.com/ChilliMEChallenge) to watch videos and read comments, you’ll see the magic of the chillis! If we were to do only challenges that we could do ourselves, why not just raise the money by ourselves? Why don’t we have enough money to fund research ourselves? Because we need Healthy people to donate. And healthy people don’t want to watch us sit in our PJs and drink blended up drinks that are soothing on our gastroparesis and IBS and interstitial cystitis. Boring! Healthy people want to see their friends make funny faces while trying to bite a pepper and say their nominees at the same time. Also, when healthy people eat the peppers and can’t remember who they nominated any more because the peppers are so hot, they realize what it’s like to live with M.E. brain fog and pain and fatigue every day. Try thinking of any thing else with a pepper on your lips. 😉 We’ve had ME sufferers come to us and say, “My family finally was interested in talking about my disease after eating that pepper!” Also, when planning the challenge we cracked up laughing watching past unrelated chilli eating videos on YouTube. Also, there is already an established world of chili challengers out there if you go look on YouTube and they have some videos up their sleeves to release for us now that the May 12 craze is dying down – that’ll help promote this and keep this ball rolling out!). This is for our family and friends to do for us and patients have been messaging us that it feels so good (hope&joy!) to laugh while holding the camera videoing their family/friends eat a hot pepper just to support research for disease. A few seconds of spiciness is nothing if it means finding the cause of this disease. Also, you can eat a spoonful of honey and say it’s hot sauce or eat a little bite of a sweet bell pepper and no one will know the difference if it’s sliced right (can’t even tell what are in people’s hands). Also, sharing your story alone is what grabs peoples attention when they see videos from the sick people and inspires people to donate. It’s been very powerful to see the patients stories because story-telling is powerful. Helps communicate incommunicable invisible illnesses. Also, as some one said above, can you think of a better challenge? We couldn’t haha. And it’s worked out great!!!”
Can I donate if I’m not in the US, UK, or Ireland?
Absolutely, the GoFundMe page should allow all countries to donate – just put the amount you want to give in US dollars and your bank will automatically convert it. If you have any trouble please contact us!
Why M.E./CFS and not another disease? Why not fibromyalgia too?
We personally suffer the most from M.E./CFS although one of us has a fibromyalgia diagnosis as well. There have been known deaths of M.E./CFS and children are diagnosed with it, unable to feed themselves or brush their own teeth and wheelchair and bed-bound. A patient is less likely to be diagnosed with M.E./CFS and even have this diagnosis acknowledged at all by 99% of doctors once diagnosed – in contrast fibromyalgia is overdiagnosed, although it is ignored by maybe 70% of doctors, especially rheumatologists. In the future, Brenda would like to do fibromyalgia initiatives but as she is ill, this year it is too much to take on both.
Why are you using the name “M.E./CFS” versus the Institute of Medicine’s SEID name or just M.E.?
Our mission is fundraising and awareness about the disease itself. We have NO interested in being involved in the politics of M.E. (i.e. the name or the IOM controversy). We are using our personal gifts the best we can and this does not involve political advocacy, though we admire those who use their gifts in the political aspect of advocacy. But if you must know our personal beliefs on the name, we are not super fond of the name SEID (systemic exertional intolerance disease). As for using ME/CFS, we feel this is the best way for people to understand which disease we’re referring to because in the United States nearly every one uses the term CFS rather than M.E. We strongly dislike the name CFS but it seems necessary for now, unfortunately. Our vision is to spread awareness to finally rid the disease of the name CFS but for now this is the best way we know to include those who only know the name CFS. If you are familiar with the devastation of, for example, children dying of M.E., perhaps you understand why we would like to stick to a name at least similar to M.E. We respect your beliefs – please respect ours.
Your poster says it starts May 12 – do I wait until then to tell people about the challenge?
No, please start promoting the event now! We need to build momentum so that we can release videos the week of May 12. We can’t promote videos if we don’t have any so please contact us when you make a video and please promote the blog and meme.
How do I nominate people?
“Tag” people in your post please, use #chilliMEchallenge hashtag, and be sure to say if you donated.
Who do I contact?
Brenda Hankins: email@example.com – The United States of America
Nicola Lavin: firstname.lastname@example.org – The Republic of Ireland
Catherine Schofield: email@example.com – The United Kingdom
Lindsey Michelle: firstname.lastname@example.org – The United States of America