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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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Article: CFS Hits Big Time "War on Mystery Disease" on Front Page Wall Street Journal

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Mar 12, 2011.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. adin

    adin Administrator

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    Too bad ADM didn't mention the previous findings of misuse of funds allocated to CFS research. *That* would certainly open some eyes in the public & show a continued history of abuse by the CDC...
     
  3. Cort

    Cort Phoenix Rising Founder

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    Maybe that's for the next article :) Here's my comment

     
  4. Cort

    Cort Phoenix Rising Founder

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    I also put this

     
  5. Cort

    Cort Phoenix Rising Founder

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    And in response to another comment

     
  6. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

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    This is a smear campaign and hit piece aimed squarely at any that dare to speak up. They've even got all of you posting apologetic responses. Wow. Maybe there really is something to this retrovirus talk.
     
  7. gracenote

    gracenote All shall be well . . .

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    Wow, Cort. Way to stick up for patients, for us "really sick people."

    Your response to Blaire was really not helpful, in my opinion.

    Thanks, but no thanks.
     
  8. Cort

    Cort Phoenix Rising Founder

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    So Amy Dockser Marcus who has been such a supporter for the past year...who has done piece after piece after piece...is now the enemy....hmmmm
     
  9. Enid

    Enid Senior Member

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    Front page Wall Street Journal - delighted to see for you all - it's been a long hard battle to bring into the open. Hope good repercussions.
     
  10. Nina

    Nina Senior Member

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    Not only is it factually incorrect, it is also morally and ethically completely unacceptable to blame patients or their advocates for lack of funding, lack or research or lack of quality research.

    I was sad to see you, Cort, reinforce the prejudice of "bitter, angry" patients. Why not leave the patient slagging to the press and a certain group of researchers? They are doing a very good job at it.

    It is also far from the truth that all the patients cling "tenaciously" to this theory, not because the science convinces them but because they are desperate for help.

    Patients never asked for "rushed" research. On the contrary, we harshly criticized the rushed and flawed studies we were bombarded with soon after the Lombardi paper.

    But the speed of the scientific process is not only influenced by care and diligence on the researchers' side, it is also vastly determined by the allocation of sufficient funding to the right institutions.

    The proportion of patients who have contacted researchers directly is marginal. What we have really "clamored" for from the beginning is federal funding for the WPI, the institute that was leading this breakthrough discovery, and to date this still hasn't happened. That is the tragedy, that is where patients clash with government institutions. That is what this article should have been about.
     
  11. Jemal

    Jemal Senior Member

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    Some of us might not like all its content, but I think this is a pretty balanced article. Amy Dockser Marcus is not necessarily our friend. She's a journalist and as all good journalists should do, she's just reporting multiple sides.
     
  12. insearchof

    insearchof Senior Member

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    I think Nina makes excellent points and Jemals remark is worth remembering. I don't quiet know what to make of this article as it is certainly not what I was expecting from an article deemed worthy of the front page of one of the worlds most highly regarded newspapers...on one of the most important scientific developments since HIV.

    It didn't do us any favors leaving the reader with an overall impression of....pushy patients jeapodising quality research. How does this qualify as front page news amongst scientific findings of researchers and other developments in this field over an extraordinary full 12 months?

    ADM has produced articles on the subject more worthy of the distinction...but it is undoubtedly her Editor who may have selected this piece from her for front page status. On a more positive note, it suggests that advocacy efforts are sorely being felt!
     
  13. wciarci

    wciarci Wenderella

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    I thought the article was fair. I read it multiple times. I think she is writing for a public unaware of CFS or XMRV. Of course, she is forgetting the aids controversy, I remember how political ACT UP was and they didn't have the internet.

    Wendy
     
  14. Cort

    Cort Phoenix Rising Founder

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    I'm actually a bit confused

    Which part did you not like? The first sentence? There is no reason for researchers not to want to find this virus? Or that I put the push by the patients in the context of an opportunity that, of course, they will tenaciously fight for?
     
  15. Cort

    Cort Phoenix Rising Founder

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    I do see what you mean by one of my comments. It could have been worded better. Given the opportunity I would have worded this differently. I would have put it in the context of 'fighting tenaciously' to see that this opportunity gets fully researched.
    .I think we should embrace the angry theme - because we are an angry community and that given our history its hard to see how we could be anything but angry, in my opinion. After all, how to explain comments by Mindy Kitei and Chris Cairns that the CDC or the NIH - which the general public admires - is trying to sabotage XMRV research or choke off funding to it! That makes us look a little strange in the public's eye - yet that is a common theme in our community.

    My response was to show that, CFS patients, after decades of marginalization, have alot of reasons to be angry. Given the context of the article - a wary, sometimes untrusting patient community pushing hard against the research community - I felt it was important to provide to show why; ie to provide reasons why patients might distrust them. That's why I pointed out the lack of funding over the years.

    Is that 'slagging' the patient community'? I was trying to provide a rational explanation for the things Amy wrote about. It was an attempt to humanize the situation - perhaps it failed.

    It was an odd topic to make it to the Front Page of the WSJ but every article gives us the chance to respond and make our views known - and it keeps us in the news.
     
  16. Cloud

    Cloud Guest

    Exactly Cort, the downside of the article was some parts of it sounding as though we are frustrated and demanding over current research, and leaves off illumination of the real source of our discontent and anger, which is 25 years of being marginalized. I too sent an email to Amy suggesting the same. Other than this, I think article is great. I see Amy as our Ali because she seems to just want the truth exposed about this illness. I don't need her to slant anything in my favor....I need her to expose the truth, and I feel she is doing her best to make that happen. She responded to my email right away expressing thanks for my input.
     
  17. Cort

    Cort Phoenix Rising Founder

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    Glad to hear that. I see the article as an opportunity for us to illustrate the past history of the illness - and to educate Amy on it as well. It appears she is getting some education :)
     
  18. Cort

    Cort Phoenix Rising Founder

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    Some more comments. I can't stay off of there!

    In response to another post

     
  19. floydguy

    floydguy Senior Member

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    I think it's speculative to assume that researchers want to find this virus. There are way too many half-assed studies and then declarations that there is nothing to see and to move on.

    On the one hand you have people saying "the science takes time" and on the other you have people doing these two week studies and then making absolute declarations. How to reconcile this?
     
  20. SaveMe

    SaveMe *****

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    thanks for posting Cort, you are always on top of your game!
    finally, attention where it is deserved.
     

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