1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
Discuss the article on the Forums.

CFS/ME needs to go viral.

Discussion in 'Fundraising' started by jimmy86, Aug 22, 2014.

  1. jimmy86

    jimmy86

    Messages:
    47
    Likes:
    34
    Hi everyone,

    I was impressed by the success of the recent #ALSICEBUCKETCHALLENGE that went viral and is the hottest thing (or coolest ;)) at the moment on twitter, facebook and the like.

    Everyone talks about it
    (http://www.bostonglobe.com/business...FlrMce5BRTixAEM/story.html?p1=Article_Related)

    It rapidly increased funds and attention for ALS.

    I particularly like the concept as it combines a serious topic which something fun, as (healthy) people usually do not want to watch documentaries of frightening illnesses as ALS.

    Long story short, I think CFS/ME has to go viral, too, maybe at a smaller scale, though.

    For this I think we first need a clever idea. Second, we need a to take control of the information, i.e. a patient written information page, which explains in a simple and quick way what CFS/ME is and how people can donate.

    I hope some people are interested in developing an idea. During a quick 5 min brainstorming I came up with the following: as we spent most of our time lying down in our bed, it would be funny if people shared a selfie of themselves in their bed, either in the morning or at night.

    What's your ideas?

    Jimmy
     
    WillowJ, taniaaust1, PennyIA and 2 others like this.
  2. A.B.

    A.B. Senior Member

    Messages:
    769
    Likes:
    2,280
    Eat a raw onion challenge.

    It has to be something that results in funny videos, which is why the ice bucket challenge has gone viral.
     
    WillowJ, SDSue, Valentijn and 2 others like this.
  3. Sasha

    Sasha Fine, thank you

    Messages:
    8,819
    Likes:
    8,296
    UK
    Tammy, catly and jimmy86 like this.
  4. goldberg

    goldberg

    Messages:
    17
    Likes:
    36
    Yep,very right,
    the fun part is the key.
     
    WillowJ likes this.
  5. aimossy

    aimossy Senior Member

    Messages:
    2,941
    Likes:
    4,004
    NZ
    I would send a selfie picture in with a bucket over my head. :)
    send it in to microbediscovery and say i have donated before i kick the bucket!
     
    Last edited: Aug 22, 2014
    DanielBR likes this.
  6. Valentijn

    Valentijn Activity Level: 3

    Messages:
    6,727
    Likes:
    10,260
    Amersfoort, Netherlands
    I think some of us would fall over as soon as getting the bucket on our heads :rolleyes:
     
    DanielBR likes this.
  7. JoanDublin

    JoanDublin Senior Member

    Messages:
    176
    Likes:
    391
    Dublin, Ireland
    I would like to challenge Simon Wessely to an Ice Bucket Challenge to raise awareness of M.E. :)
     
    catly and DanielBR like this.
  8. DanielBR

    DanielBR Senior Member

    Messages:
    166
    Likes:
    523
    Germany
    Yes!!!

    I am really impressed by their success. The participation skyrocket the last month.
    It is literally the perfect viral internet campaign. A challenge, everybody can participate, it is new and fresh, fun to watch (especially with celebs) and it has a very good vibe. All the misery, pain and fear of ALS is left out (that reminds me of the film NO!, where they use funny and clever television ads to get rid of the dictator Pinochet in Chile. At one point, they want to show the people all the pain and suffering Pinochet brought to Chile and the marketing specialist says, no, they need something positive, funny and hopeful instead and it worked!).

    I think, we face some problems though. First ALS has a known pathophysiology. There is no doubt, the disease is real. They lacked funding in the past, because it is so rare. Not because some doctors thought it is psychosomatic and just in their heads.
    A campaign could backfire on us. So control of information is very important.
    Secondly, I am not sure, if we can ride on this wave. If we just copy the challenge with some other idea (and others are already trying this), people might get tired of challenges pretty fast, even angry, because they could see us as cheap and lazy copycats.

    I totally agree, that healthy people usually don't want to deal with suffering and frightening diseases. I really hope that the two new documentaries will bring more insight and attention to our disease, but I am a bit afraid, only ME patients and their families are going to see. Hopefully I am not right. :)

    So what to do?! I think we shouldn't copy a challenge, or if we do one, we should wait a couple of month till the ALS campaign faded out. We need something hopeful, inspiring and positive. I like the selfie idea. Selfies are hip and easy to do. Hm, maybe, we could ask, what outside activity do like the most. Like hiking, cycling, swimming in the ocean, kayaking, diving, etc and ask people to take selfies or videos, while they re doing it. Somehow we combine this with ME. Like you love it, we cannot do it, but hope to join you soon! A positive vibe with some serious underlying.

    Hm, I ll think of more or better ideas.
     
    Cheshire, beaker, Kati and 11 others like this.
  9. Denise

    Denise Senior Member

    Messages:
    247
    Likes:
    377
    Before deciding on how to get a viral campaign, is it worth deciding who would get the donated funds?
     
  10. Sasha

    Sasha Fine, thank you

    Messages:
    8,819
    Likes:
    8,296
    UK
    Good points there, @DanielBR - I wonder if we'd have more success once we have our upcoming documentaries widely available.
     
    NK17 likes this.
  11. DanielBR

    DanielBR Senior Member

    Messages:
    166
    Likes:
    523
    Germany
    I think, the funds and donations always should go to doctors and researchers out there, who have serious research capacities behind them (like a university or an institute), do serious biomedical research, have experience with ME, fought or fight for our cause and who we trust.

    Like Dr. Klimas, Dr. Montoya, Dr. Kogelnik, Dr. Lipkin, Dr. Edwards, Dr. Newton, Dr. Mella and Fluge etc.
     
    taniaaust1, SickOfSickness and NK17 like this.
  12. aimossy

    aimossy Senior Member

    Messages:
    2,941
    Likes:
    4,004
    NZ
    could stay in bed and :rolleyes: have family to stick a bucket over your head and take a pick of you if possible...it was toungue in cheek though :)
     
  13. catly

    catly Senior Member

    Messages:
    187
    Likes:
    371
    outside of NYC
    I think could be a real issue. The ALS association started the challenge. It is nationally based with something like 38 regional office. As a disease that affects probably 100 times more people than ALS in the US we don't really have such an organization. We have a number of good researchers and some smaller advocacy groups but we have no central place where funds could go and get dispersed across a range of programs. Perhaps there could be a way of doing this but I can't seeing it be all that easy.

    Otherwise I love idea.
     
    taniaaust1 and DanielBR like this.
  14. DanielBR

    DanielBR Senior Member

    Messages:
    166
    Likes:
    523
    Germany
    Why I had the idea with selfies of outdoor activities. I recently watched a documentary about extreme outdoor sports. It was about riding with a bicycle through Kyrgyzstan, free climbing, surfing at extreme spots in winter in Norway, BASE jumping and other crazy stuff, people are doing. And while I was never interested in extreme sports (I even found it very silly), before I got sick, I was really, really hooked by the film and the athletes and I think I got partly, why they do it.

    I thought about it and realized, that I crave for real connection with my body. I crave for feeling complete again and for experiencing the world through my body (and not only my mind). Like feeling the warm sun on my skin (without feeling crappy), feeling the water around me, while jumping into a pool, or just smelling the rain and feeling awake.

    I realized this is one of my biggest desires. So maybe we can use this to get our message to the people.
     
    Cheshire, WillowJ, biophile and 5 others like this.
  15. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,237
    Likes:
    3,803
    USA
    Wow, I was thinking about this last night and posting something to ask how we could do something similar to the ice bucket challenge (but all you guys beat me to it!). My step-daughter never heard of ALS before this challenge and now wants us to donate $100 for ALS so the campaign definitely worked!

    But I assume the ALS Foundation has a national marketing budget and salaried employees that we could only dream of for CFS.

    I feel like the campaign for us would have to be both educational and fun. Most people either have never heard of CFS or they have heard completely inaccurate info with negative stigma that has minimized the suffering.

    I'd like to see the campaign take on each piece of misinformation and then challenge it with a rebuttal statement. But not sure how to do this in a "fun" way or how to get the funding? The only hugely famous person with CFS that I can think of in the US is Laura Hillenbrand but she is very ill and must be bombarded with requests non-stop!
     
    WillowJ and DanielBR like this.
  16. A.B.

    A.B. Senior Member

    Messages:
    769
    Likes:
    2,280
    Lipkin might be a good reference point. He has a slick website for the microbiome project, good reputation, a small marketing team, and got the paperwork in regards to accepting donations all sorted out. He really just needs the funding.

    Even if the microbiome project itself is speculative and might not lead to any answers, merely having the chance to bring attention to this forgotten chronically underfunded illness is worth it. People will be disturbed to learn how little CFS research gets in comparison to the damage it does to society. Offering alternatives to the psychosomatic perspective should also be helpful in the long run.
     
    taniaaust1, acouchy, jimmy86 and 2 others like this.
  17. DanielBR

    DanielBR Senior Member

    Messages:
    166
    Likes:
    523
    Germany
    I ve often wondered, where all the celebrities with ME hide. I think, we have at least as many ME patients as MS (ca. 0,1%). Maybe more. Probably less severe cases. Maybe it is the stigma or they are misdiagnosed. Or they are to ill to rise awareness. Or they are not ill enough yet to worry. But then, why is nobody reporting (I thought the yellow press loves this stuff). I had the hope Angelina Jolie would get interested in ME, while filming and directing Unbroken (probably she met Laura Hillenbrand). That would be huge! She is one of the most prominent persons on the planet. Maybe she is interested, but just doesn't have time, while doing all the other charity work.
     
    NK17 and Gingergrrl like this.
  18. Soundthealarm21

    Soundthealarm21 Senior Member

    Messages:
    266
    Likes:
    236
    Dallas, TX
    To be honest, I think doing something similar anytime within the next six months would be a bad idea. We don't want people to become desensitized.

    Although as a Marketing Major, this was absolutely brilliant from ALS.
     
    Kati, WillowJ, Snow Leopard and 5 others like this.
  19. Denise

    Denise Senior Member

    Messages:
    247
    Likes:
    377

    I very much agree that we'd have to wait at least six months before launching a campaign that we hope to have go viral. But I also think it is likely to take at least six months to fully develop such a campaign.
     
    WillowJ and jimmy86 like this.
  20. Gingergrrl

    Gingergrrl Community Support Volunteer

    Messages:
    2,237
    Likes:
    3,803
    USA
    I wonder if there is some way to link our idea (whatever it ends up being) with Jen Brea and Canary in a Coal Mine so the campaign raises awareness about CFS and the film?
     
    NK17 likes this.

See more popular forum discussions.

Share This Page