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Funding our research

Discussion in 'Advocacy Projects' started by Omar88, Sep 23, 2012.

  1. Omar88

    Omar88 Senior Member

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    We are waiting for NIH,CDC or other funding's every year while half of it goes to physiological research and that means that half of it is wasted !

    We are more than 5000 memebers here why we wont start to donate for a research and why we dont do that every year !?

    If only 500 -1000 of us paid a 1000 dollars and am sure that we are paying more for tests and doctors with no benefits we can get somethin like 500 thousand up to million, 10% of the people who donate will be the material for the study , sick people from diffrent groups and i mean by groups how they got it ( post viral infection , tick bit " Lyme and other co infection" , blood transaction , sexual contact ,,, etc )

    The advantage of this will be that we are doing something to help our selves without waiting NIH,CDC charity , the only people will this study include will be from us so we can be sure that those people are sick and there chose was right, and we will be sure that all categories of illness people here will be in the study,,

    Hope we could do this cause this will be better thousand times of just waiting :)
  2. taniaaust1

    taniaaust1 Senior Member

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    Omar.. most here who have this illness are now practically broke. Most cant work and have spent any savings they had originally on treatments, supplements etc etc., many of us have to rely on disability pensions.

    That all being said thou, where I are in Australia.. A LOT of good research, MOST of our research, has been funded by ME/CFS patients and their supporting private orgs eg Alison Hunter Memorial Foundation, Mason Foundation etc (the founder of that originally sold her house and put the money into research and that foundation is probably the top funder of ME/CFS research here and has been for maybe 10 years).

    Only one of the states of Australia Governments (Queensland) tends to even put any money at all into ME/CFS. If patients here didnt donate to those groups at all, there would of been hardly no research which would of come out of Australia at all but fortunately due to patients, quite a bit of good research has come from here even thou our population is small compared to America. So yeah.. patients can be giving studies the opportunities to get done.

    probably as far as our government goes, its probably been even worst here then the American Gov as far as ME/CFS goes, seeing its only funded by one state... but yeah we do have quite a few good studies coming out of our country due to patients donations. We will never get anywhere if everyone waits on gov to fund ME/CFS studies etc .

    Im all for patients being involved in making sure good studies are set up... as most studies done currently ARE flawed.
  3. alex3619

    alex3619 Senior Member

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    I think we could do something with a research funding drive, but I definitely wouldn't limit it to Phoenix Rising. It will also take some planning to agree on who to fund for research.

    Many of us are broke though, and the longer we have been sick the more broke we are. That doesn't mean that everyone is broke however. This is just begging for a few polls. I am sure something can be done.

    Bye, Alex
  4. Omar88

    Omar88 Senior Member

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    Thanks Tania but die trying to figure out something is better than dying at my room in pain saving 1000 dollars
  5. Omar88

    Omar88 Senior Member

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    Thanks Alex i wish people will do something cause we can really do it
  6. alex3619

    alex3619 Senior Member

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    We can make a difference Omar, its a question of how to make it happen, how to motivate people, and how to plan for it. I think it can be planned for. A good plan will go a long way to make it happen.

    Some organization will need to be holding the funds in such a situation prior to payment to researchers. It could be an existing advocacy organization or maybe even something like PR - I don't know the legal status of charities like PR, my guess is it would be OK for PR to hold funds for research, its what advocacy does, but it pays to make sure.

    Some process must decide on how to fund projects and which projects.

    Some public relations process must be started to get people as supporters, and even better as donators.

    Some process must be put in place to report to people who donate - they will want to be informed.

    This project could use advice from people who have done these kinds of things already - does anyone with experience with this, including pitfalls, have any advice?

    Bye, Alex
    Tally, Aileen and Omar88 like this.
  7. Omar88

    Omar88 Senior Member

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    What can i say Alex we can make a plan and a full stratigy we can help our self but as you see its looks like its not interested to them while waiting 2013-14-15 studies and shouting about conspiracy and how the world left us alone waiting for charity is more easier or something , I know they are in pain and am sorry if am attacking but am shouting from pain too cause if we start doing this people from all over the world will participate in the future and we could go ahead​
  8. Aileen

    Aileen Senior Member

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    Such a thing already exists Alex. The ME/CFS Pocket Money Research Fund was set up so that people could donate even very small amounts of money to research. Some of our top doctors/researchers like Nancy Klimas are involved. Please check out the website for more information. It is a part of the cfsKnowledgeCenter charity.
  9. Omar88

    Omar88 Senior Member

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    Do they include people who donate in those studies ?
  10. Aileen

    Aileen Senior Member

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    Not likely Omar. The purpose is provide a place for people donate if it is just a small amount (but it doesn't have to be) and to distribute it to worthwhile projects. All the info, including how to contact them, is on the website
    http://www.pocketmoneyfund.org
  11. Omar88

    Omar88 Senior Member

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    This is what i meant if they by saying if they choose 10% only from people who donate from different groups this will give people a push too participate as they or some people with the same illness will be there so they will be sure that there money wont be wasted.
  12. alex3619

    alex3619 Senior Member

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    Hi Omar, I do wonder if this might lead to ethical issues? I am not sure, but it might. I will have to think about this, although I still agree it can be done. The pocket money link shows only a few thousand dollars has been raised. This is far too small to make much of a difference.

    Mind you, if I were to push for studies right now, I would probably want to put my money toward the Norway Rituximab trials. They have promise and are ready to go, just lack funds.

    Bye, Alex
    Tally, taniaaust1 and Omar88 like this.
  13. Tally

    Tally Senior Member

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    It's really sad that we can't even get research grants for something like that. Ok, most of us are broke, but isn't there anything we can do?
    Omar88 likes this.
  14. alex3619

    alex3619 Senior Member

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    I do think something can be done. First though it would be nice to establish regular updates on Rituximab funding. Is anyone in contact with the researchers in Norway?

    There is specific funding toward specific research in the US. I do not have figures. I think that supporting high value research projects might get better funding from donations.

    Bye, Alex
  15. Aileen

    Aileen Senior Member

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    The easiest thing to do is participate in online charity contests but we can't get very many people to do it. We have managed to win some money for ME and FM charities but not nearly as much as we should have been able to win. All people had to do was go to facebook or a company website and click on a couple things. But would they do it? No!!

    The Aviva contest is starting in Canada on Monday. You must be Canadian to vote. If you aren't Canadian but have friends or relatives who do live in Canada who are either Canadian citizens or permanent residents of Canada then please ... beg them to vote. Details are in this post of Kati's: "Attention Canadians:AVIVA Contest"
  16. Tally

    Tally Senior Member

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    Why do you think that is?
  17. Aileen

    Aileen Senior Member

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    Oh Tally, I wish I knew!! Some of us have turned ourselves inside out trying to get people to vote in the various contests. We've had discussions trying to answer this very question. Unfortunately we still haven't figured out how to get people who claim to want the money so badly to click the mouse a few times to take it! :cry:
  18. alex3619

    alex3619 Senior Member

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    A very large percentage of people do NOT like facebook. Its invasive. Signing up for these contests means the company can data mine your facebook info, its part of the terms of agreement. Many people do not even have a facebook account for this reason. These competitions exist in part so that companies can do cheap market research, not just for PR value.

    Many more patients are simply not on the net. Only a small minority of patients appear to be on the internet. Many of us use the internet sparingly too. More are simply not engaged in trying to fix things, they have been too demoralized. Many are too trusting with the "system". "The authorities know best, they will fix things, why should we bother?"

    There are many reasons people do not vote. While I have a facebook account for voting, many simply presume I use facebook for other reasons. I do not. I almost never use facebook. If it were not for the competitions I would not even have a facebook account. Its a highly invasive piece of software that creates the illusion of friendship without the substance.

    Bye, Alex
    merylg likes this.
  19. Kati

    Kati Patient in training

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    I may be a bit biased, but Dr Kogelnik has got to have the most exciting research program and collaboration right now. His OMIE- Merit project will come live soon and an announcement is overdue but coming.

    You can watch the DVD from Invest in ME 2012 for his presentation if you have them (you can buy them for 30$ and all proceeds go to research.
    merylg likes this.
  20. Aileen

    Aileen Senior Member

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    There are approx 5800 members here on Phoenix Rising. But in the recent Chase contest we couldn't even get 1,000 votes -- that was with some of us voting twice due to bonus votes and getting our relatives to vote. That is just one ME/FM forum. Even with the minority of patients on the internet, we should be doing much better.


    I also loathe Facebook and like you only have an account in order to participate in these competitions. I consider it my duty to do my small part. If we aren't willing to help ourselves, why should anyone else?
    alex3619 likes this.

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