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The answer is simple

Discussion in 'Action Alerts and Advocacy' started by cigana, Feb 12, 2011.

  1. cigana

    cigana Senior Member

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    We have no cure because we have no government funding. There is an easy, affordable way to get funding. The trick is it requires everyone ill to donate a small amount.

    Just $2.50 a week is affordable by everyone. If the governent announced "we have a cure and it's only going to cost you $2.50 a week" every single person with ME would pay that.

    $2.50 a week = $10 a month = $120 a year

    With 1 million people ill that equates to

    $120,000,000

    per year for pure research. Game over in a few years.

    So the problem is one of communication to PWC's. They need to know that the nightmare will be over if they just each donate a tiny sum each week to research.
  2. eric_s

    eric_s Senior Member

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    Yes, i fully agree. I have been saying the same thing a couple of times. It wouldn't even take 10$ a month, the key is mass participation, in my opinion. As you say, it's only a question of organization and communication. We have it in our hands.

    I believe CFS organisations all over the world must unite behind this mission and this message, win the PWCs for it and cooperate in initiating and supervising the research efforts.

    And i bet we would become very attractive to researchers if we had that kind of funds.
  3. fla

    fla Senior Member

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    As soon as I got my first disability payment I joined NCF since they are all volunteer most of the membership fee goes to CFIDS research. I would encourage all CFIDS sufferers to support a CFIDS organisation they personally feel is doing the right things.
  4. eric_s

    eric_s Senior Member

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    Yes, since people will probably always differ about where the priorities are and who the best researchers/institutions/organisations are, it's important that there is a choice.
    So join or support whoever you deem best, but please try to make a little contribution and do your part, if you can.
    And the CFS organisations should share their knowledge between each other on how to best reach out to people, educate doctors, do political work and advance the research. And cooperate where it's possible and makes sense.

    I think the biggest challenge is to reach people with ME/CFS who are not on the forums and not members of an organisation. Probably those are even the majority. Many might not even be diagnosed. It would be interesting to have numbers about the CFS organisations and forums, how many members they have and how many non-members they are reaching, to see how to best reach everybody and where most work is needed.
  5. Sasha

    Sasha Fine, thank you

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    I agree that this is a great approach. I think it would work best if we could all see whenever someone donated. People copy what they see others doing, and join in with successful campaigns. I think again, this is where having lots of smaller organisations isn't helping, each with their own initiatives - we need a call across the organisations and to have some tracking of progress.
  6. cigana

    cigana Senior Member

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    Hi eric,

    I agree that contacting the members of charities and support groups is a priority. Once we have a means of essentially advertising to PWC's, we can begin a campaign. In the privtae sector this happens all the time - companies pay for the contact details of potential customers and target those people. We have to use the same strategies as companies if we want the same kind of success. Sometimes we're too worried about 100% proper behavior, but being a little less discreet and more "capitalistic" in approach might be one of the fundamental changes we need to make in our movement. Let's be more business-minded.

    Hi Sasha,

    Yes I agree competely - people are like lemmings in that sense (myself included!). When they see others donate they are more inclined to do so themselves. I think people are more inclined to contribute to a fund which is already large - because they perceive that as something which will truly make a difference. A small fund is less exciting...

    Mark
  7. eric_s

    eric_s Senior Member

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    I like that idea. I have thought about putting all my donations (it's not very much, but better than nothing) in my signature for that purpose. But then i didn't do it, because i felt some people might be offended, if they feel they are not able to donate. But maybe i will do it later and it might even spread and be a good thing, who knows. Or we could have a page where people's donations are listed.

    Totally agree with a call across organisations. I think this is how to make the difference and move us forward. If we can achieve that. A global campaign, a common push of a majority of organisations. They can all decide for themselves where to invest the money, what matters it that they all move in the same overall direction. And i'm sure such a campaign would also inspire PWCs to join organisations and energize the community, if they see they can achieve something.

    I believe more in organisations managing something like this than in individual donations, beacuse an organisation can negotiate with researchers and is an "adress" where researchers know there is money (if there is) and they can come and knock on the door and present an idea for a project. Individuals can only donate if there already is an institute or a planned study, they can't have a say, unless they have a lot to give, probably.
    An organisation can advertise better and it can remind its members to pay (of course there should be no pressure on people who are not able to donate and the goal should be reasonable, a couple of $ per month) and there can be votes about what to do with the money. And the organisations can report their numbers and what has been achieved science-wise, so we can have a global picture.
  8. Emmanuelle

    Emmanuelle

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    Great idea. I think it's common to feel that a small donation won't make a difference, but of course every bit counts-- especially if everyone chips in. I pledge to send money this week-- maybe WPI. Thanks for the nudge.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Could we have a fund here at phoenix rising and on the home page a tally of the total donation and the money sent to WPI or something like that. How many cfsers are on this board?? Heaps!! we could raise some $$.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    The study with the most optimistic numbers on diagnosis in the US found only 15% of pwME(CFS) were diagnosed. And, yes the vast majority of pwME that are diagnosed are not on ME on-line communities or regularly read ME blogs. There are over 1M in US and 17 on the planet wME according to the best data we have at present. Does anyone have figures on on-line participation or membership in individual forums?

    Just for illustration, $10 per month from 20,000 pwMW would be $2.4M a year for WPI which would still be a huge help for them. So of course I encourage 'drizzling' them with cash. Let it rain!

    When Dr. Bell sent out his letter to support WPI months ago, there was a thread where the donations of PR members was tracked and celebrated. This was great and I think it would be a good idea to resurrect it or start another. Dr. Bell's letter is v. important imo and should be displayed prominently everywhere, including a thread such as the one i'm suggesting. I'm not a funding rallier, so someone else would have to take this up if you wanted.
  11. caledonia

    caledonia

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    You can see the amount of money donated to the WPI via Facebook Causes here: http://www.causes.com/causes/399439-cure-4-me

    I thought about having this as the start page of my Drizzle Donations to WPI campaign, but then I thought, well that's an extra step and you have to explain about clicking on the green button to donate. So I linked to the next page that comes up after you click on the green Donate button.

    But maybe that's a mistake? I'm still trying to work out the bugs on this campaign. Once it's ready to roll, the WPI said they will put in on their Facebook page.

    To make this really work we will need to contact every ME/CFS org, forum, blog, etc. and get them to help us get the word out to "their" PWC's.
  12. cigana

    cigana Senior Member

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    Hi Caledonia - thanks for the link. I was shocked to find myself listed as a recent donor - that must mean they really don't get many new donations coming in...
  13. eric_s

    eric_s Senior Member

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    I think this would be a great idea. Why not have a yearly or half yearly Phoenix Rising fund. With a vote on where to send the money. With an individual goal that can easily be reached, like 10$ or so, so that everyone can do it and still will have money left to donate elsewhere. It would be great if we can get people used to do that kind of thing.
  14. eric_s

    eric_s Senior Member

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    Thanks for the info. I think this is where we must start. All the best efforts can never bring us the success we want and need, if such a high percentage of PWCs is lost. Such a low rate of diagnosis is not acceptable in our developped countries (i guess it's more or less the same in Europe). CFS organsations have to go to work there, to change that. We need those one or two million of people! I think this is the key.

    This is my overall idea:

    • Educate doctors and the public to get everbody diagnosed
    • Make a high percentage of those people join an organisation or at least be in touch with one or read a forum, so they can be reached and are informed
    • Establish regular communication and coordination between the organisations, nationally and internationally
    • Raise money through the organisations and forums to fund biomedical research, better inform the public about ME/CFS and advertise for them to donate, lobby and demonstrate, if necessary, for more public funds for research and better treatment in public health care and better recognition by social security institutions
  15. caledonia

    caledonia

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    Getting Everybody Diagnosed

    The MCWPA is soliciting ideas for a Public Service Announcement to be broadcast on TV. TV stations are required by their license to broadcast a certain amount of PSA's for free.

    This could be a good avenue for pulling in those 80% who are undiagnosed.

    At the end of the video, there can be a link to a website for more info, where we can hook them up with forums, advocacy orgs, etc.

    Here's the link to make suggestions. They'll compile the suggestions, then have patients vote on the one they like the best to actually become the PSA.
    http://forum.mcwpa.org/viewtopic.php?f=65&t=306&p=2315#p2315

    =-=-==-=-==-=-

    Getting all the Orgs to Communicate and Coordinate

    I've been pondering this one. I think a Ning Network could provide a good solution. It costs $2.95 a month to start. I think this would work better than a Facebook page. Each group could have their own profile page. There are forums, chat, groups, etc. You can post pictures and videos.

    Then every org would have to be contacted and invited to participate.

    Here is a good list of ME/CFS orgs and support groups: http://www.mecfsforums.com/wiki/Organizations_for_ME/CFS

    -=-=-==-=-=
    Fundraising, advocacy, etc would be easier with everyone plugged in together and the undiagnosed on board.
  16. Tammie

    Tammie Senior Member

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    I realize that the point is to get people to donate anything, even small amounts.....even so,

    I am far less likely to donate anywhere that I know that others are going to see the amt I gave

    ...if no one is going to see the amt, then I tend to think that every little bit counts and to give what I can even if it is a very small amt.....however, if I know that other people are going to see just how small an amt I donated, I am much much less likely to donate anythign because the amt I can afford is embarrassingly tiny...plus the tallies feel like pressure and judgment (& in one fairly recent case I know of, somethign like this led to a major online attack of those who were unable to donate or donate much)

    also back when I actually donated more money, the flip side was true - I didn't want people to know how much I was giving because it seemed like bragging and becasue it seemed to put too much pressure on others to give more than they could afford or to feel bad that they couldn't

    now if there were an online tally with no names connected that could be encouraging
  17. caledonia

    caledonia

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    You can sign up with a fake name on Facebook. That way only you know who you are and what you donated.
  18. jace

    jace Off the fence

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    You can donate directly and anonymously here http://www.wpinstitute.org/help/help_donation.html

    This drizzle to become a river idea is similar to the Facebook Count Me In campaign - where members undertake to donate on the 20th of each month, in defiance of the orchestrated "contamination" papers and press release published on December 20th last year. Last month was the first time. Let's help that campaign grow.

    Don't believe their total donations figure though, it's better than that - people like me, and Tammie if s/he was a member, do our donations through the direct link so our names/amounts are not included.

    Funding the WPI is key. They have been refused - 10 is it? - grant applications since the Science paper was published. The people who are heavily invested in the wrong and damaging hypothesis of CFS, those that wrote the Fukuda and the Reeves definitions, are still in a position to strangle investigation. We have to side step them. Funding the WPI is our best hope and chance.
  19. cigana

    cigana Senior Member

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    Hi Justin,

    Are you saying that although 1million Americans have ME, only 150,000 have actually been diagnosed?

    Cheers,

    Mark
  20. Otis

    Otis SeƱor Mumbler

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    I believe that to be correct, Mark.

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