1. Patients launch a $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!
The Chronic Fatigue Initiative and Interview with Mady Hornig
In a follow-up article to the recent IACFS/ME conference presentation in San Francisco, and after speaking at length with Dr. Mady Hornig, 'searcher' delves deeper into the impressive work being completed by the Chronic Fatigue Initiative, and focuses in on those cytokine results ...
Discuss the article on the Forums.

Article: M.A.D in May #5: The 'Support ME/CFS Research' Day

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, May 9, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Enid

    Enid Senior Member

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    Spoiled for choice here Cort - any thoughts about which one most likely (ME/CFS dedicated) to finding the cause, or is that a silly question since all have a role.
  3. Sasha

    Sasha Fine, thank you

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    I'd like to add Dr Nancy Klimas's Morton Fund at the University of Miami to the list - here's the link.
  4. kurt

    kurt Senior Member

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    Dr Bell has a research group also, a bit informal but they solicit donations. Funds will go directly to useful CFS studies, including a follow-up of the original Lyndonville outbreak cohort. http://www.davidsbell.com/DSBResearchGroup.htm
  5. Cort

    Cort Phoenix Rising Founder

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    Thanks Kurt, I will get it in there.....Sasha - thanks for the link.

    Enid - what a touch question. They are all doing important work. You know I love the CAA's research program - particularly the stuff Dr. Broderick is doing and their vision of a Research network. I'm also really intrigued by what Dr. Montoya is doing (I love that he's from a top institution) and by Dr. Klimas' new cytokine studies and her work with Dr. Broderick. Those are my personal top three.
  6. taniaaust1

    taniaaust1 Senior Member

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    Something for ones wanting to support ME/CFS research in Australia, I think its important for research to be encouraged all over the world.

    The Judith Jane Mason & Harold Stannett Williams Memorial Foundation (Mason Foundation) funds Aussie CFS and Alzheimers research with 60% of the money going towards CFS.

    This fundation has helped fund the following CFS studies
    - University of Melbourne (d lactic acid intestinal bacteria)
    - Univeristy of New South Wales (genetic determinates of post infective CFS)
    - Hunter New England area health service (CFS as a manifestation of a post infectious fatigue complex)

    (probably quite a few others but those are the ones Ive read about.. these sciencists its choosen to fund are well known and do get the study info then out there as Ive seen studies by them published).

    to donate to this org which funds CFS studies around Australia

    "ANZ Trustees is the trustee of The Mason Foundation and is one of the leading managers of
    charitable funds under management in Australia. The Mason Foundation is one of over 235
    charitable foundations managed by ANZ Trustees. More information about The Mason
    Foundation and its other grants for medical and scientific research and ANZ Trustees are
    available at www.anz.com/anztrustees. or contacting 1800 011 047."

    For more on this fundation and the studies http://docs.google.com/viewer?a=v&q...NGyRVK&sig=AHIEtbSoSAuyM8RB2CUWXFEY--j_ILxIBw
  7. Tuha

    Tuha Senior Member

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    I find this part of the article very interesting:
    "Donate $10 Multiply the ME/CFS research budget!
    Lets all try to donate at least $10 to biomedical ME/CFS research, and then ask family and friends to do the same. Donations are easily made online (via a credit card of PayPal).
    Please report on ME/CFS internet forums when you have made your donation, so as to inform and inspire others to do the same!
    Lets multiply the research budget 2011!"

    I think the patients donations are now very important. When the state agencies dont want to support ME/CFS research - its maybe the most important source. What is important to say that if every patient would donate $10 - on the end it can be a huge amount of money for research. We are talking about 17 mil patients in all over the world - so it would be 170 mil $. Ok, not everyone is diagnosed, maybe someone has no money to donate but then we have families, our friends, someone can give more than $10 so I think if everyone would join this effort - we could even multiplicate these 170 mil for research - and this can make a really difference.

    I can tell you one possitive example from my experiences and how i see the situation. The last year I asked my familie and friends to support the research - i was really surprised because they sent me almost $1000 and I think they are not so rich. So I could support some research organisations with $1000.
    Where I see the problem, its a bad publicity. If I have money I try to support research regullary but if I would see the effort from others i would donate more. Now I know only that some research organisations are asking about money for some studies but thats everything. I would like to know more informations - which would motivate me and the others to donate.
    I can imagine that there would be a publicity for some studies with the informations like:
    - a presentation of the study (in scientist but also non-scientist language)
    - how long will it take
    - how much money do they need
    - do they have already some money for the study from sponsors, universities, state agencies, their own money

    Now, if I donate sometimes I have doubts if my money will help because I dont have any informations. But if a researcher will say - I want to do a study which will cost $100 000, we have our own sources and from sponsors $50 000 - for me it will be a good motivation to donate. And then they should refear I dont know each 2 weeks about the donations for the study so we can see the progress in funding for the study. If the people will see that the others donate a lot of them will follow. Now, you just feel that you are alone and that your small donation will not make a difference.

    Also these patients donations are important to ask money from the state agencies. They often support the studies with their own budgets. So if you will show - we have $50 000 and we need another one - the chance is much bigger that a state agencie will give you the rest than when you have nothing.
  8. Camilla

    Camilla

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    I'm in! Have just sent off my (first) 10 bucks. Will ask friends and family too.
  9. eric_s

    eric_s Senior Member

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    What about Dr. Komaroff's work? Is there any way to fund that? I've never heard about any way to do that so far.

    In Australia there's also the Alison Hunter Memorial Foundation.
  10. Cort

    Cort Phoenix Rising Founder

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    Hey lots of interesting research in Australia Tania! Thanks! I will put it on there.
  11. Cort

    Cort Phoenix Rising Founder

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    Got it Eric - thanks. Am adding it to the list.
  12. Cort

    Cort Phoenix Rising Founder

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    I just found out that Dr. Peterson has set up a non-profit for his research efforts. Don't have the details yet.

    $1,000 - Very encouraging Tuha. I agree that targeted studies that demonstrate exactly what they are trying to find out, the significance of that, timelines, etc are very helpful with donations. Dr. Peterson will be doing that with his studies.
  13. eric_s

    eric_s Senior Member

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    Hi Cort, i have an entire list of such charities, it's not complete, but there are some that are not in your list yet. If you want it, i can send it to you. And please reply to my pm, if you see this, it's important that i can contact that person as soon as possible. Thanks.
  14. Emma

    Emma

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    So much to choose from... I've made my donation now. Will give more when able, and then pick a different charity.
  15. Dolphin

    Dolphin Senior Member

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    Well said, Anne (and Cort). I donate monthly to research.
  16. Dolphin

    Dolphin Senior Member

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  17. PANDORA

    PANDORA PANDORA

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