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!
ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
Discuss the article on the Forums.

"COWARDLY ACTS AND EVERYDAY REBELLIONS" by Mindy Kitei

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Mindy Kitei, Jul 9, 2010.

  1. Mindy Kitei

    Mindy Kitei

    Messages:
    70
    Likes:
    55
    I just posted a new article on CFS Central, which includes news posted by the CAA that the FDA/NIH paper will be published within weeks.

    Mindy Kitei
    CFS Central
    http://www.cfscentral.com
  2. natasa778

    natasa778 Senior Member

    Messages:
    1,334
    Likes:
    1,062
    London UK
    Thank you mindy !!!!!!!
  3. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    185
    Clay, Alabama
    Good, Mindy. I have always believed the problem is that an initial conclusion was reached with CFS with little evidence. But once determined, it became institutional. After the paradigm was set, only an extraordinary amount of evidence would change it, something so blatant it couldn't be ignored or dismissed. It is as though it is carved into the medical psyche.

    The forces against change of thought are strong: ego, preventing an admission of error being one of the foremost. But other forces are more subtle. To change what one believes means abandoning what one used to believe. This puts the person into the unfamiliar, the unknown. And as one lets go one's belief on a matter, they lose a part of who they were, their identity. This is not just a mental, logical exercise. It requires humility and courage to be open to new ideas. It requires a strong character.

    The hardest words for a human to say, especially men in positions of authority- as in the medical research industry which claims medical intellectual superiority- are "I was wrong. I am sorry."

    Tina
  4. SOC

    SOC Moderator and Senior Member

    Messages:
    5,016
    Likes:
    5,624
    USA
    !

    Magnificent article, Mindy!
  5. Sing

    Sing Senior Member

    Messages:
    1,301
    Likes:
    421
    New England
    Thank you, Mindy, for another great article--The list really goes on, doesn't it, for all the false beliefs about illnesses!

    I just started another thread on the opposite phenomenon in the section on General News. It is about the history of the development of the Canadian Consensus Definition. This too is a great story, only of the David and Goliath variety, about the incredibly scrappy patient organization, www.mefmaction.net , and their work to create, establish and work on disseminating worldwide the CCD s for ME/CFS and Fibromyalgia. Worth a read.
  6. SOC

    SOC Moderator and Senior Member

    Messages:
    5,016
    Likes:
    5,624
    USA
    I suspect that is exactly what we're dealing with. Conspiracy theories don't sit easily with me, and the notion that an institution is out to get ME/CFS patients sits equally poorly. The idea that a handful of men in positions of authority in the medical research industry can be fighting themselves -- their fear of loss of prestige, their unwillingness to admit their own failings -- more than they're fighting us, makes sense to me. Yes, we're caught in the middle of their personal struggles of character and it's not fair, but life isn't fair.

    Good observations, Tina.
  7. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    I wish we could fire Reeves all over again, this time publicly.

    Maybe the New York Times will go back to him for a quote when the FDA/NIH paper is finally published.
  8. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    Hi Gracenote, it's nice you see you around. :)

    I'm sure Reeves will be full of bluster about something tangential but at that point it hopefully won't matter.

    Since I had hopes (sad to say something of this magnitude is hoped for) dashed once before I'm reserving judgement until I see the paper for myself, but I'm feeling a little better about things.

    Begin rant directed at no one person, but a mindset that has become 'institutionalized' recently.
    --------------------------------------------

    I don't really care what people's motives are, it's actions that matter, and in that regard most governmental action (or inaction) has done us grave harm, directly or indirectly. If It walks like a duck...

    Right is still right and wrong is still wrong. Call it what you wish. I think it's an endless debate of little consequence and I'm tired of reading on every thread that this all wasn't a conspiracy. That poor horse is dead and has been flogged into dust.

    I want to discuss the topic of a given thread. That's why they have titles.
    ---------------------

    End of the rant that I could no longer restrain.

    So thank you Mindy, I hope you can confirm this independently, I have misgivings about the CAA as an exclusive source of news.

    Otis
  9. Michelle

    Michelle Decennial ME/CFS patient

    Messages:
    104
    Likes:
    10
    Portland, OR
    It was a great post by Mindy.

    I think you hit the nail on the proverbial head, SickofCFS, when you said that it's not that the CDC is out to get us but fighting against themselves, or rather, to protect themselves. And like you Tina, I've often thought as I've been trudging through Osler's Web that it's as much a study in how various institutions work - or not work - together in completely failing a group of very sick people as well as the larger public health. It was remarkable to see how many things went wrong. How everyone was terrified of studying a disease that would turn out to be "unreal" and by doing so, ruin the careers they had spent so long building. How there's a culture and decorum to public medicine and Cheney (particularly) wasn't following that by speaking so much with the media (though I completely understood why he did) and thus helped to marginalize himself and us. How just one or two individuals (Straus, Kaplan) could completely and utterly shape the way EVERYONE in medicine thought about this disease. How competition both helped and hindered scientific discovery. And, of course, the roles of ego, misogyny, class (or presumed class) etc.

    If the story didn't have such brutally personal implications, it would really be a fascinating study in institutions. I keep hoping my godfather, who is a political scientist, will read Johnson's book and do a much better job than I at explaining the massive institutional failures she describes.
  10. SOC

    SOC Moderator and Senior Member

    Messages:
    5,016
    Likes:
    5,624
    USA
    Ouch! :eek:
  11. caledonia

    caledonia

    Messages:
    2,692
    Likes:
    1,288
    Cincinnati, OH, USA
    Good article. If anybody is familiar with the Myers Briggs personality types, they would recognize the institution as an SJ - a traditionalist who likes keeping things the way they are, and who dislikes or fears change. A large percentage of the population also falls under this category. While this is great for providing stability and security, it's not good for when change needs to happen. This type of personality is also values status, so they will be prone to trying to keep up appearances, save face and so forth.

    If science were a personality, it would be an NT, or someone who enjoys learning and discovering new things. If the old theory doesn't fit because of the evidence, it's discarded and the new theory is easily taken up. In the population, there are a lot less NTs then there are SJs.

    You can see how these two forces would be butting heads, and the poor patients are caught in the middle.

    We will all have to keep putting pressure on the institutions by using the media and our representatives to force the change.
  12. alex3619

    alex3619 Senior Member

    Messages:
    6,662
    Likes:
    9,793
    Logan, Queensland, Australia
    Hi Sickofcfs

    the thing about consipiracy theories is that they presume that opposition is organized, so when you go looking for it you can perpetually fail to find any evidence. I think most so-called conspiracies (yes, including ME and CFS) are actually the result of local organic action. Insurance beancounters want to maximize profits, CDC sorcerors want to keep their power-bases, and psychobabble missionaries have to protect their careers (and also their school of thought). When these forces work in collusion they look like a conspiracy, but it is just people being people (in the bad sense). This can all be summed up in one phrase: the "principle of enlightened self interest", but with heavy sarcasm on "enlightened".

    Bye
    Alex

  13. judderwocky

    judderwocky Senior Member

    Messages:
    327
    Likes:
    3
    its really more than that... psychologists have been dealing with the erosion of their discipline for the last 30 years... they're holding onto psychosomatic disorders for fear of complete irrelevance.
  14. Tembo

    Tembo Australia

    Messages:
    63
    Likes:
    10
    Mindy you are fantastic - thank you!! This has totally made my day :)
  15. SOC

    SOC Moderator and Senior Member

    Messages:
    5,016
    Likes:
    5,624
    USA
    I agree with you completely. I'm willing to go with the "principle of self interest" and not even try to say "enlightened" with a straight face. ;)
  16. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    I can't find the CAA confirmation of the Alter paper being published soon? Does anyone know where it is?
  17. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    The say here:

  18. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    428
    Raleigh, NC
    Thanks! Mindy says her sources state the findings will be unchanged - wouldn't that be something?
  19. V99

    V99 *****

    Messages:
    1,471
    Likes:
    1
    UK
    It really would.
  20. Otis

    Otis Señor Mumbler

    Messages:
    1,116
    Likes:
    115
    USA
    The first tip came from this facebook post. It's now truncated but read "The researchers have conducted additional experiments as requested by the reviewers and their paper is expected to be published in the Proceedings of the National Academy of Sciences within weeks.""

    Of note from facebook is the comment they posted as to an inquiry made (by me) as to the source of the news is the following reply "... The information comes from several well-informed people close to the study with whom we are in regular contact. "

    Their XMRV page on the CAA website has the original quote but you have to search hard to find it.

    I was happy to see Mindy confirm the news, although there is no formal announcment that I've seen.

See more popular forum discussions.

Share This Page