1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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New XMRV-like MS discovery. MS Can funds $10M; $100M US+. How to do this for ME/CFS?

Discussion in 'Action Alerts and Advocacy' started by shrewsbury, Nov 24, 2009.

  1. shrewsbury

    shrewsbury member

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    New XMRV-like MS discovery. MS Can funds $10M(~$100M US)+. How to do this for ME/CFS?

    There is a new, exciting theory in MS that it is a vascular disease rather than an auto-immune one.

    I see so many parallels with xmrv in this story, and find it inspiring to see what a good advocacy, and a good national advocacy group can do.

    What I have read and infer of the storyline is that:

    >Dr Zamboni's wife has MS. He researched a non-traditional cause and thinks he's found a cure.

    >The MS group last year funded $10 million in research. Their position on Dr Zamboni’s work has been extremely cautious

    >Individuals or small groups got the media interested and primed (maybe some media also have a personal connection? Andre Picard was the journalist on both articles). This part was extremely effective.

    >Media is coordinated to have the front page article and documentary coverage coincide

    >Meanwhile, pressure has been being put on the national MS group to get involved - they remained cautious

    >After the double-whammy of the weekend, the MS group comes out today saying they'll fund research into Zamboni’s work (a lot of pressure must have come before for this announcement to come on Monday morning!)

    >While not changing their position of caution, the MS group, who funded 10 million in research last year (and that's in Canada - US equivalent would be about $100 million!) are calling for research proposals:


    SO – while the circumstances of a ground-breaking unexpected new theory are almost eerily similar to the finding of xmrv, that’s where the similarities stop; The Canadian and American ME/CFS national advocacy groups have done basically nothing or done things negative.

    And where maybe there’s a role for us to make them more similar. I see another advocacy opportunity.

    How do we get the Canadian and American (and other) ME/CFS advocacy groups to advise caution regarding xmrv, but still to

    call for research proposals

    fund them to whatever degree is necessary to test what it is and its relationship to ME/CFS​

    I think I will try to get this info together to send to the Canadian and American ME/CFS groups to point out that they have the opportunity of being equally responsive to our needs and do something similar for xmrv.

    Anyone know of any documentarists who would do a good job?

    I'm not capable of much these days and it will probably take me a while. If anyone wants to help or to take it on, please PM me.




    Notes:

    1. This came out of a thread on MS and there is some discussion there for its medical implication for us

    2. The Globe and Mail, one of Canada's national papers, ran a front page + all page 8 article on it on Saturday.

    3. W5 aired a documentary on the new research and theory on both Saturday and Sunday. They also made the documentary available on the web.

    4. Today's Globe and Mail has a follow-up article

    5. Today’s article ends with a warning:

    islandfinn:)
     
  2. Koan

    Koan Be the change.

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    Hey If,

    Can you link up this with the existing thread re this? I don't know how to do it and I think it would be a shame if the existing comments got lost. I can't remember who it was but a member had some interesting comments about MS. So did you, as I remember.

    Do you know how this is done?

    merci!


    ETA Oh, you already did! You used one of those hidden link up thingamabobs! Well, who's the computer maven, now?! I'm impressed.
     
  3. shrewsbury

    shrewsbury member

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    hiya Koan

    I had posted a form of this first on the MS thread.

    I then thought it would be a great advocacy tool and started a new thread here in advocacy to see if others would like to get involved.

    I did link to the MS thread in Notes #1 and mentioned that there are medical implications for us there too that people probably would want to consider.

    But happy to oblige and link here again.

    pas de quoi

    islandfinn:)
     
  4. Cort

    Cort Phoenix Rising Founder

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    I don't think you really need to worry about the CFID's Association or Meruk or any other ME/CFS group funding research into XMRV if its gets replicated. They will all want to and some will be able to but they all have very little money.

    The CFIDS Association is trying to get together funds to fund a replication study. So is Dr. Klimas, so is the Dubbo group; the question is whether they will be able to or if its out of their hands - ie in the hands of the feds; the CDC, NCI, etc.

    If it works out XMRV will be the main focus of research into ME/CFS. I would assume that researchers will flock to study this if it works out - I don't think we'll need to worry about funding..... what we need to get to that point is to have the replication studies work out.

    The CAA is a very small player in the research field; they don't have the money to impact it substantially - all they can fund are small support studies that gather enough data for a major grant. Until a support group gets big enough the money is really all in the hands of the Feds.

    When I talked to Dr. Miller on the 29th of last month he said the CDC had already tested 100 samples yet we've heard nothing from them....we should hear something soon I would think.
     
  5. shrewsbury

    shrewsbury member

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    Thanks for the info Cort. Very helpful.

    I love MS Canada's advocacy and responsiveness to patient needs. Wish we had national organisations with those qualities AND the money!

    Will be very interesing to see their results. So appreciate your keeping in touch with everyone and keeping us informed.

    Not sure if the 100 samples were taken from the Georgia study Klimas mentioned below in the NYTimes, but appreciate the matter-of-fact way she addressed expected differences in their results if they used the "reeves" definition.

    islandfinn:)
     
  6. rwinsmom528

    rwinsmom528

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    ME/CFS organizations have very little money...why?

    Why is it that MS and cancer and so many other diseases have walk-a-thons and bike-a-thons and awareness ribbons, etc. and can raise so much money and ME/CFS has none that I am aware of? Is it the crazy name that means "always tired", so no one pays attention? Is it that people with ME/CFS are hit suddenly with a debilitating illness and are unable to advocate for themselves, and most people with MS and other illnesses have years of functionality before they become disabled, where they can particpate in raising money, and also can still work and have some money to donate themselves? Is it because people who are disabled with MS actually look disabled?

    What can be done to raise awareness and garner needed donations?

    I am bedridden/housebound with ME/CFS. I can't do a walk-a-thon. I could wear an awareness ribbon, but no no one would see it because I rarely leave the house because of worsening of symptoms. It is even difficult to write letters or send emails because I make so many typing mistakes and grammatical errors that It takes me a long time to correct everything......I am sure you understand. It would be great if there could be greater awareness and support for research for ME/CFS.
     
  7. rwinsmom528

    rwinsmom528

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    Sorry I am so long in replying. Still can't figure out how to get emails of replies to posts, even though I read the How-to sticky note. (couldn't find the -great, now i am drawing a blank as to what the button is called- universal cp?? button.

    Can you tell me more about donate your birthday? I don't have a facebook account and don't want to have one because it would be too overwhelmoing for me to keep up with I think. When I clikc the link it wants me to sign in to facebook.

    Can't really donate personallly right now. Can't work. husband out of work 5 months. now only part time. 6 mouths to feed.
     
  8. I think the reason why there's an imbalance of funding is, to put it bluntly,

    =The Grim Reaper=

    People are terrified of death. As soon as there's a study reported in the papers that, for example, blowing up balloons increases your chances of getting lung cancer by 0.05%, nobody will even look at a balloon.
    Same goes for MS -- there is the perception that once you've got it, you'll be dead in 10 years.

    I think the general opinion is that people with ME live just as long as healthy people. (People have said to me: "Oh, I'm glad it's not MS because you'd die young if you had that wouldn't you?")

    THIS is the fact we have to change, IMHO. We need more funding into studies into the life expectancy of people with ME/CFIDS.

    Rachel xx
     
  9. Lily

    Lily *Believe*

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    Only the misinformed think someone with MS will be dead in ten years. MS does not shorten lifetime. The chance that one will become an invalid within 10 years though, which is true, is to most equally frightening.
     
  10. _Kim_

    _Kim_ Guest

    Hi rwinsmom528,

    The settings you need to change can be found by starting at the top of the page and clicking Settings > Forum Settings > Messaging and Notification > Default Thread Subscription Mode > Instantly using email

    That will set it up so that anytime you post a message on a thread, you'll get email.
    If you want to override that setting, you can post using [Go Advanced] then scroll to the bottom and under [Subscribe to this thread and notify me of changes] select one of the other options.

    Hope that helps. PM me if you need further assistance.
     
  11. Yes... unfortunately a lot of people are badly misinformed about MS... and ME... and... well, you name it. *sigh*
    Although, that might be just me and my brain fog. :)

    Rachel xx
     
  12. Dolphin

    Dolphin Senior Member

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    Right on both counts.

    ME Research UK are co-funding a study with the Irish ME Trust as a lot of people will know: http://www.meresearch.org.uk/research/projects/xmrvsweden.html

    But we need all countries that have significant numbers of patients diagnosed to try to raise money for research - how much are groups in Canada (given that's the country that was mentioned in this thread) raising for research/how much have they invested in grants to research projects over the last x number of years?
     
  13. Dolphin

    Dolphin Senior Member

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    (Reply #1)

    ME Research UK have justgiving pages
    http://www.justgiving.com/charity/search.aspx?cid=182263

    I think the CFIDS Association of America have similar pages one can have.

    One can have a flick through what other people are doing - one person has it for 40th birthday http://www.justgiving.com/Catherine-Friess .
    This means that people donate in lieu of presents.
    Hopefully as it is for charity, people would give more than they would give for presents. And also some people who might never have given a present, would give a donation. Same can be done for anniversaries.

    I've seen people who are housebound do things like a sponsored silence. Another idea might be to be sponsored giving up TV for x days.
     
  14. Dolphin

    Dolphin Senior Member

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    It is interestng to consider why there might be such a difference.

    One thing I know is what a small amount of people with ME/CFS (and their families) donate to research and/or do some sort of fundraisers.

    And when people improve, an even smaller number of them donate (even though their financial situation might have improved). One problem may be that people can convince themselves they're better. XMRV may change this - they may still be XMRV+. So perhaps that might help indirectly.

    Regarding symbols, there is the blue ribbon symbol http://www.brame.org/ . We have raised tens of thousands of dollars with it (note this is more than just my family).

    The great thing with it as a fundraising tool is that:
    (i) it is cheap to buy a large quantity of them (they only cost in the region of 10c each)
    (ii) they are cheap to post
    (iii) they don't go out of donate so they can be used again.

    We have organised lots of collections outside supermarkets and the like.
    I'm not well enough to do them but my family do and a lot of years they've involved their friends. My siblings have their own lives but once they're available they donate tend to mind doing this one thing for me and neither does my mum. I do have to generally ask my siblings - similarly other people might have to ask somebody healthy would they do something e.g. another common thing are walks/runs/mini-marathons/marathons that are not for specific charities so different people do them for different causes.
     
  15. Dolphin

    Dolphin Senior Member

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    You could have a point. But the people you might need to convince are the people with the illness who, to my mind, often don't take it seriously enough including not seriously enough to try to raise money for research through donating/try to persuade family to donate and/or fundraise/persuade others to fundraise.

    We have found when we fundraise, the general public are happy to donate.
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree, we do need more studies on mortality. Despite Prof. Jason's study the UK psychiatrists are still promoting the idea that ME/CFIDS does not cause mortality except suicide.
     
  17. Dolphin

    Dolphin Senior Member

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    I'm not sure if it is that easy to do mortality studies well with our illness. Buchwald did one as well. Progress in other areas e.g. a biomarker, might make it easier - it's not always clear if people are over their ME/CFS or not at the moment. And of course data may take a long time to collect.
     
  18. Cort you asked if anyone else was doing XMRV research in Canada besides Dr Paul Joliecoeur. YES. Dr Ellie STein is teamed up with Dr Suzanne Hagan of the University of Glasgow, and they did an XMRV study involving patients from CAlgary and Edmonton Alberta this past month. So, put Western Canada on that XMRV map! The funding is all Scottish (Canadian gov't funding this year is limited to one U of Calgary exercise physiology study - about 4,000 dollars from the Canadian Gov't, not sure if they got any matched funds from Alberta gov't or from the U of Calgary.). Talk about microfunding.

    Well, I am glad to be on this forum, finally. now if only I could figure out how to use it! ;-)

    Linda MacDonald
     
  19. Dolphin

    Dolphin Senior Member

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    ME Research UK http://www.meresearch.org.uk part-funded the exercise study http://www.meresearch.org.uk/research/projects/extolerance.html .
     

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