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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Article: Equal Pay/Equal Power/Equal.....Research Funding: the Campaign to End Chroni

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jun 2, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. usedtobeperkytina

    usedtobeperkytina Senior Member

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    I agree that gender bias is part of the story. The problem with joining with other advocacy of illnesses that are associated with women is that it may reinforce the misconception that men and children don't get ME/CFS.

    Kind of ironic that men are feeling female gender bias.

    Tina
     
  3. Cort

    Cort Phoenix Rising Founder

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    Agreed..

    ....it certainly does help explain some things, though...the lack of recognition... the tendency to dismiss the disorder - we talk about problems with the name but putting together a mysterious disease with lots of symptoms but no clear answer and women and throw in a traditionally patriarchal medical system...well, do that and you get alot of sick people and not much research into it or its allied disorders. The fact that these other disorders aren't getting funding either was an eye-opener for me.

    Here we are socked away in the Office of Research into Women's Health in the NIH - an office with no money for CFS research...:(
     
  4. Snow Leopard

    Snow Leopard Senior Member

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    CFS alone costs the US economy over $25 billion dollars per year in terms of lost productivity etc. If CFS was solved 20 years ago, then that would make a pretty real difference to the bank account of an average American. It is about time the public is made aware of this.

    I was also thinking about forums such as TED - surely someone like Dr Peterson, Dr Chia, Dr Lerner or Dr De Meirleir would be qualified to present such a talk.
     
  5. Athene

    Athene ihateticks.me

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    I don't want this to make me sound like a horrible person, but I was kind of relieved to learn that XMRV is also implicated in prostate cancer. It gave me hope that some middle aged men, with influence, might decide to put funding in a direction that could help their own interests... and indirectly help us as well.
     
  6. HopingSince88

    HopingSince88 Senior Member

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    Andrew - TED is a great suggestion!

    Athene - I had the same thoughts. I bet many of us did.
     
  7. awol

    awol *****

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    important article and discussion topic Cort, thanks.

    I agree - Let's do a TED campaign! Who is the best speaker for talking about the general problem of the illness and recognition, not just the research?

    Mikovitz - too busy, too specific
    Johnson - great in writing, anyone seen present?
    Peterson - ?
    Bell - ?

    With TED the key is to have really really good speakers, and good, simple, memorable images/graphics.
     
  8. Cort

    Cort Phoenix Rising Founder

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    I wonder if a Campaign to End Pain in Women theme would be best for TED - since it would have a huge audience, people would be shocked that these mostly female disorders are getting the shaft from the big research centers..it's kind of an unknown problem.

    I was thinking of dr. Donnica - very impressive presence - but maybe they're looking for researchers - people on the cutting edge of research?
     
  9. DrDonnica

    DrDonnica

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    Love your blog Cort. Am posting it on my FB page today. I gave a talk in 1992 at the national Congress on Women's Health called "Not All in Your Head" focused on the conditions which disproportionately affect women but are dismissed as being fabricated or exaggerated. Ironically, my husband & son have since been diagnosed with CFS. While I still focus most of my talks/outreach on CFS wrt women, I think talking about the children with CFS does get a lot more attention. BTW: What is TED?
     
  10. HopingSince88

    HopingSince88 Senior Member

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    Dr. Donnica,

    You can find information on TED on the Wiki page here: http://en.wikipedia.org/wiki/TED_(conference)

    And their website here: http://www.ted.com/talks

    TED has really grown over the last decade and has attracted some amazing speakers. I think you have to listen to a couple of the 'talks' to get the idea. They are limited to 18 minutes in length each.
     
  11. Cort

    Cort Phoenix Rising Founder

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    I had exactly the same question about TED (what is TED?) :cool: Dr. Donnica you were fantastic on the latest Nevada Newsmakers. Measured but passionate and articulate. Right out of Central Casting. ;)
     
  12. HopingSince88

    HopingSince88 Senior Member

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    Some quotes from the TED website:

    "TED is a small nonprofit devoted to Ideas Worth Spreading. It started out (in 1984) as a conference bringing together people from three worlds: Technology, Entertainment, Design. Since then its scope has become ever broader. Along with two annual conferences -- the TED Conference in Long Beach and Palm Springs each spring, and the TEDGlobal conference in Oxford UK each summer -- TED includes the award-winning TEDTalks video site, the Open Translation Project and Open TV Project, the inspiring TEDx program and the annual TED Prize."

    Many of the TED talks are on science and medicine now. So the original concept of technology and design have expanded greatly.

    There is also an annual TED prize.

    "
    The TED Prize is designed to leverage the TED Community's exceptional array of talent and resources. It is awarded annually to an exceptional individual who receives $100,000 and, much more important, the granting of "One Wish to Change the World." After several months of preparation, the wish is unveiled at an award ceremony held during the TED Conference. Over the life of the prize, wishes have led to collaborative initiatives with far-reaching impact."


    Here is info on Dave Eggers, who was a past winner. He got to make a wish, and TED helps in some way to make the wish come true.


    http://www.tedprize.org/2008-winners/


    So, this could be a platform for educating the masses on ME/CFS, on gender discrimination in medicine, on XMRV, or some other idea that would be of benefit to us.


    We could wish for better funding from CDC for ME/CFS, for example.


    In order to get a better idea you can peruse the TED website. All the talks are available to watch for free. Many are awesome and inspiring. It is worth your time to check them out.


    There is a global conference in July, BTW.





     
  13. HopingSince88

    HopingSince88 Senior Member

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    and PS on TED - I think that the folks that are involved in the project are very open minded and altruistic, and would be open to our plight.
     
  14. awol

    awol *****

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    I would recommend to anyone doing a TED talk to take a look at some of the best presentations that have been done there to prepare. Riveting stuff.
     
  15. HopingSince88

    HopingSince88 Senior Member

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  16. Hip

    Hip Senior Member

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    With "50 million American women living with one or more neglected chronic pain conditions" (to quote the endwomenspain web site), that is probably enough clout to vote governments in and out of power.

    If these 50 million could somehow be politically organized, you could use democratic leverage to vote in a government that vowed to hugely increase the research budget for these diseases.
     
  17. boomer

    boomer Senior Member

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    The 50 million is an interesting statistic. What percentage of the population. I ask because I would like to apply that percent to the population of my country and raise awareness here too. Thanks.
     
  18. Hope123

    Hope123 Senior Member

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    I want David Bell to do the talk. Knowledgeable, humorous, down-to-earth, and to the point. Besides which he is retired and open to doing talks from what I know without a profit motive.

    I think one angle the talk can come from is how unsolved illnesses are still treated in the same way as illnesses like MS/ seizures before the scientific basis is found.That way, not only are we talking about CFS specifically but about how illness is viewed in our society in general -- e.g. you could be healthy today but what if you fell down ill with a mysterious illness tomorrow? How would researchers, doctors, society, your family, workplace, insurance, etc. treat you? Something even healthy people could relate to.

    The point of giving a talk at TED or a similar group (the Clintons use to attend a group annually which now escapes me) is the number of influential and wealthy people with altruism who go to them. Perhaps someone will get interested in helping get seed money for CFS research.
     
  19. awol

    awol *****

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    I agree with your ideas Hope123. Are you in touch?

    I could assist with graphic design for any presentation
     
  20. Cort

    Cort Phoenix Rising Founder

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    We have 309 million people here so its about a 6th - about 16% of the population
     

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