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Most promising place to donate to?

Discussion in 'Action Alerts and Advocacy' started by knackers323, May 9, 2014.

  1. knackers323

    knackers323 Senior Member

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    What do people feel is the best place to divert funds to?
    In terms of promising research that could lead to better understanding and treatment of this illness.
    Both in Australia and internationally?
  2. Purple

    Purple Bundle of purpliness

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    Internationally:

    The UK rituximab clinical trial, spearheaded by the UK charity Invest in ME and advised by Professor Jonathan Edwards, a pioneer in the field of B-cell immunology, autoimmunity and rituximab: www.ukrituximabtrial.org

    Dr Lipkin's study at Columbia University in New York - Microbe Discovery Project - www.microbediscovery.org
    Last edited: May 10, 2014
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  3. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    There are a lot of good places currently to donate too over the world.

    In Australia there are two I think highly of which have done a lot.

    The Alison Hunter Memorial Foundation. This is a biomedical ME research foundation set up by the mother of a young girl who died from ME.. Alison Hunter. http://www.ahmf.org/aboutus.html

    This foundation not only funds good ME/CFS studies but has also done a lot in Australia to try to educate doctors on ME/CFS eg many years ago now they funded to bring top ME specialists to Australia eg Dr Peterson, Dr Kenny Mierer (oh Ive spelt that wrong) and other well known specialists and held talks to both our doctors and those who have ME/CFS. I attended a very well attended lecture from these top specialists due to their funding.

    They've also helped fund International ME/CFS conferences with top ME experts overseas with getting DVDs of the conferences out there publically available for all. So they certainly have made an impact on world level.
    ............................

    Or the Mason Foundation (full name is Judith Jane Mason & Harold Stannett Williams Memorial Foundation). Judith Jane Mason has ME/CFS. This foundation has funded for a very long time now and still does, MANY studies into ME eg they helped fund many of the Australian Bond Uni ME/CFS studies into this http://www.bond.edu.au/about-bond/news-and-events/news/BD3_019855
    (bond uni studies look at our immune system abnormalities.. I cant think now what name those researchers are going under but they still are doing ME research).

    They also fund the Adelaide CFS Research Group and other ME/CFS research around Australia and are responsible for most of the Aussie research that has been done (with Alison Hunter foundation probably funding most the rest).

    I was astounded one time when I started to collect the Australian research and their name just kept coming up. (This foundation has a focus on helping studies which may lead to treatments/cure of ME/CFS but also has a focus on the same for Alzheimers, so funds both these disease research).

    http://www.anz.com/resources/2/f/2f....pdf?CACHEID=2fce2b804a47773887c8cfac93b0266b Wow I didnt know this but from that it says they fund ME/CFS research around $50,000-60,000 annually. It also says that they prioritise funding to new researchers (ones who have got their PHDs in past 5 years) to these two illnesses, so I guess that is helpful to bring new ones into our fields. Thou the research Ive seen funded by them didnt appear to have new researchers ..the Adelaide research group is full of doctors old enough to retire!!, so maybe there is no new researchers trying to enter into ME/CFS research here.

    Neither of the above non profit orgs fund bad ME/CFS research and they both use decent diagnostic criteria eg Canadian so many will think these studies are better then many which are funded in America.
    ...........

    Ive been in at least two of the studies which have been funded by the Mason Foundation and I think the current study Im in (with Adelaide Research Group people but I dont know if they still go by this name) was funded once again by them.

    Its a study re us loosing actual grey brain matter.. and is trying to vertify its previous result it got from a study done 7 years ago... that the longer we've been ill, the more grey matter we've lost midbrain due to this disease. In the study being done currently, they are also looking at our optic nerves for clues (as that is an extension to the brain.. I dont know of any other study on us which has done this.. interestingly my optic disk appeared inflamed on the first scan I had).

    They've also added extensive neuropsych assessments to their study to try to look at our brain issues.. which tested different areas of our memory functioning. I was blown away by that part of the study they are doing as my testing showed extremely dramatic decline in my brain functioning with certain tests.. not all neuropsych tests showed up my ME issues but some certainly did and maybe this lead to better assessments of us or at least help vertify some of us have extremely bad brain issues which get worst when we make our brains work.
    .........

    I think if I currently was going to donate, I'd probably do so to the rituximab study as I think that could be a helpful treatment for ME. If its proven to work they can sort out the whys its working later.
    Last edited: May 10, 2014
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  4. WillowJ

    WillowJ Senior Member

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  5. knackers323

    knackers323 Senior Member

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    Ok guys so if you had a big amount of money to donate to cfs, these are the most likely to get results hey?
  6. Firestormm

    Firestormm Guest

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    Dr Lipkin and his team at Columbia who are working with well-known ME clinicians.

    They have more or less exhausted the $10million from Hutchins family with the CFI initiative, but want to follow-up and continue their research.

    Currently we are crowdfunding for a large microbiome study.

    See this latest article from Health Rising: http://forums.phoenixrising.me/inde...th-ian-lipkin-posted.30189/page-2#post-463003

    Or visit the crowdfunding website direct: http://www.microbediscovery.org/ and join in the global patient effort to help keep Lipkin and his team engaged with ME research :)
    Purple likes this.

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