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!
Join the National PR Campaign for ME/CFS: Power to the Patient (P2tP)
Have you had enough of all the neglect and abuse of ME/CFS patients? Gabby Klein says now is the time for a National PR Campaign for ME/CFS to impress a change. Join the Patient Revolution to restore power to ME patients ...
Discuss the article on the Forums.

Funding our research 2

Discussion in 'Advocacy Projects' started by Omar88, Oct 14, 2012.

  1. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    It seems that my first idea of us funding our research was not acceptable or at least that people didn't like that much while i cant figure out why ?!

    I just was reading how Japan reduced there funding for CFS/ME research to $76,000 this year and how we are all have this feeling that governments are ignoring us beside the big number of people who they believe of the conspiracy theory !

    If we need our voice to be heard we should shout and say something, am sure we all have families and friends and they love to help us so we are not a lone.

    We have to raise the awareness of this disease like other illness communities did and lots look at Autism, who doesn't know Autism and that's because of the good work of their community.

    Am thinking of campaign that wont cost a lot to tell people about us, a campaign that would include a video documentary, short video, Facebook and other social network commercials, getting media attention and people who never heard about us beside donation.

    This will be the first step in bringing our story to the people out side and let them know that it could be them one day.

    If we could let 100 million people knows about us this will be a victory and another victory will be if 1 million of them donate even with a 10 dollars for each, beside huge companies as a part of there social interface and celebrities too.

    This wont cost a lot but it will make a big difference for us and people will know what is hidden from them in this world.
     
    Izola and SpecialK82 like this.
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,080
    Likes:
    908
    Concord, NH
    Please post a link to what you are talking about, this is not ringing a bell for me.

    GG
     
  3. SpecialK82

    SpecialK82 Senior Member

    Messages:
    894
    Likes:
    467
    USA
    I agree Omar, we need to do mass public awareness and education. That would change everything for us. Also agree that we have such great ways through the internet to reach people - I think the million dollar question is - What can we do/how do we do it?
     
    Omar88 likes this.
  4. snowathlete

    snowathlete

    Messages:
    2,173
    Likes:
    2,569
    UK
    I agree Omar. The problem is getting a group of people with the right skills, and the energy to make things happen. Given our energy limitations, maybe some kind of collaborative network with clear aims would work, that way lots of people can do a small amount of work and achieve something bigger than one or two people. The problem is that someone (probably with energy and skills) would need to set up some kind of vehicle that enables this to work.
     
  5. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Can you be more specific ! am not getting what link you need to see ?
     
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,080
    Likes:
    908
    Concord, NH
    Sorry, I thought you were referring to a previous thread?

    GG
     
  7. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Am trying to do what am good in trying to help at what i see i can help with, I work in a social media company and that what we do and i can see how much advantage could come from this !

    A real documentary about us that would include best CFS doctors, researchers and some of patients too.
    A short meaningful high quality video from 1-2 mins so every one could have a look of what we are in.
    Facebook small commercials that would appear by millions so people world wide can visit a page or see a video that we add.

    More ideas on my mind but we should take the first step and then its all will be easier
     
  8. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Some people have more energy than others maybe for now and we would use that.
    Its better than die waiting !
     
  9. caledonia

    caledonia

    Messages:
    2,959
    Likes:
    1,558
    Cincinnati, OH, USA
    Do you have an "in" with the Ad Council, and what would our message be?

    I see this as the only effective strategy, other than research which discovers something big that puts us on the map - like XMRV was for a year or two. Or maybe some famous actor or politician who has a personal interest who will go to bat for us.

    Not to burst your bubble, but there have been other ad campaigns which pretty much did nothing - such as a couple of campaigns done by the CFIDS Association, one of which I believe was funded by the CDC. The MCWPA was starting to make a bit of splash with XMRV, then that was disproven, so nothing is happening now.

    There is already awareness stuff all over YouTube and the internet, especially from the UK - there are a lot of bedridden people posting videos from there.

    A group of us on here had pretty much decided that instead, we should concentrate on research, and that meant winning money with contests such as the Chase contest for charities.

    Make me change my jaded grumpy old mind with your brilliant ideas - lol
     
  10. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    That why we should do something special something different this time bringing big names to our campaign we should go for something we didn't do before and that would make a change
    We all should make put the ideas and try to figure out how to show it on the best way that would help us.
     
  11. snowathlete

    snowathlete

    Messages:
    2,173
    Likes:
    2,569
    UK
    Anyone on personal terms with the Dutchess of Cambridge?
     
  12. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Not me but why her exactly ?
     
  13. snowathlete

    snowathlete

    Messages:
    2,173
    Likes:
    2,569
    UK
    The bigger the profile the better chance of success that's all. Doesn't have to be her.
     
  14. caledonia

    caledonia

    Messages:
    2,959
    Likes:
    1,558
    Cincinnati, OH, USA
  15. snowathlete

    snowathlete

    Messages:
    2,173
    Likes:
    2,569
    UK
    i dont think celebs with it will necesarily help because although they have the profile they are just as knackered as us. Better to get a celeb with an interest, maybe a family member with it or whatever. I think it would need to be someone significant to really have an effect, someone everyone knows.
     
  16. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Ok so we should pick up a group of celebrities and try to connect with ,,,

    Lets make a list now for such people and we will see who will help !
     
  17. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,038
    Sth Australia
    I personally think it would be a great idea to find a celeb to support our cause. .. Maybe one who doesnt have ME/CFS would be better as they'd have more energy and probably be able to try to help us more.

    My suggestion would be for well known celebs to be sent the DVD "voices from the shadows" as Ive heard that is good at showing people just how serious this disease is (we need a way like that to really get their attention)... along with a personal letter asking if they could do anything to help the ME/CFS situation become better known.

    Even i they didnt agree to advocate for ME/CFS.. maybe thwe'd still get some celebs who would then decide to donate some money into ME/CFS research.


    Maybe suggest some good studies currently trying to get off the ground which havent yet even thou they have the people to do them as they are currently in need of funding.. I can right now think of two). I suggest to have suggestion on where we are currently desperate for donations to be going too (as we dont want the money to be wasted on bad psych studies!!).


    If we could get the attention of just one celebraty focused on this illness.. it could help to make a big difference in one of those two ways. I think this is one area of ME/CFS advocacy help which hasnt as yet been really been done much if at all. (so many of us have done letters to gov thing, to health depts etc etc pointing out issues and asking for change..but that approach isnt working well so we need others as well). We need someone, drawing public attention to our plight.
     
    Omar88 likes this.
  18. taniaaust1

    taniaaust1 Senior Member

    Messages:
    8,061
    Likes:
    5,038
    Sth Australia
    I think the main thing people would need to know is which celebrities had already been targeted (if any).. so people dont end up bugging a celebrity. (if they werent interested the first time if approached well by someone, its probably a waste of time to approach that one again). Also if a whole heap of people started sending stuff to one celebratory.. it could backfire and make the person feel targeted and harrassed by this community. All it takes is ONE person to get another interested in something if its done well.

    Practical aids to help people in contacting a celebratory and ways to approach one to get one to listen.. may be a good idea as most of this community hasnt got the energy to be working stuff out and putting stuff together... eg example letters on what could be written and sent
     
  19. Tally

    Tally Senior Member

    Messages:
    154
    Likes:
    115
    I think we need a face for ME. It doesn't neccessarily need to be a celebrity. If we make a video about ME/CFS people can't connect emotionally with a disease. But if we put a person in spotlight people might be more compelled to help. What do you think?
     
    Nielk likes this.
  20. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    We could send a MSG having a long list of signatures on it from sick people and we could figure out other ideas like making an appointment and visiting but for now is there a specif names that we should go to ? or should we just try different doors until one of them will be open ?

    I believe taking our problem out side to the light and make public know about us beside start getting people to fund for our illness is a big step !
     

See more popular forum discussions.

Share This Page