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Teitelbaum's post on Psychology Today (and my response)

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Eric Johnson from I&I, Nov 4, 2009.

  1. Eric Johnson from I&I

    Eric Johnson from I&I Senior Member

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  2. Wayne

    Wayne Senior Member

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    Response to Dr. Teitelbaum

    Hi Eric,

    Thanks for posting this. I made the following comment (pasted below), but don't know whether it posted or not. (I've not been able to get back onto their comments section.)

    Regards, Wayne
    ..........................................

    Dear Dr. Teitelbaum,

    Many have been dismayed in the past by your failure to differentiate between "chronic fatigue" and ME/CFS. This article will probably only reinforce this dismay.

    I have always appreciated your involvement in ME/CFS, and have benefitted from reading your book and becoming aware of your SHINE protocol. But I do soooo wish you would take to heart how you often fail to emphasize how ME/CFS is NOT just another chronic fatigue state.

    Sincerely, Wayne
    Last edited: Jun 13, 2014
  3. hvs

    hvs Senior Member

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    In all seriousness, he is now flirting with lawsuit territory. After 3 mos. or 6 mos. or a year when enough good-faith actors confirm the WPI findings and there are a good collection of publications, any doc blowing this diagnosis and treatment with the result that patients lose their job is going to be liable for malpractice.
  4. Frickly

    Frickly Senior Member

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    Good responses......

    It's official.......not happy with Dr. Teitlebaum.
  5. kamina

    kamina Retired account

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    Wow, my respect for Dr.T has dropped considerably over the past few weeks (though to be fair, I was previously indifferent about the guy, at best).

    Good responses Wayne and Eric - both well said.
  6. zoe.a.m.

    zoe.a.m. Senior Member

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    I enjoyed reading all of the responses, there are an awful lot of well-spoken people over here!

    What the article brought to mind for me (other than the very questionable treatment of XMRV as "just another virus") is that, since Dr. T has spent so long treating this "very real illness" for so many decades, why has he not made it more clear as to who he is treating? If he has 90% improvement rates, how could he have not published more in this area, and defined his group in terms of one of the many CFS definitions or come up with his own criteria to use consistently?

    As Dr. Grobstein said in her testimony (I'm paraphrasing), there needs to be clarity about which criteria are being used so we know if we're testing people with the same illness. I can't believe that Dr. T would be so selfish as to keep a 90% improvement rate so quiet (unless, apparently, you buy his book or an issue of a magazine with his article in it)--it just doesn't make good sense or good science!
  7. anne

    anne Guest

    Mine. Man, that guy is shameless:

    It's interesting watching the reactions to the XMRV news--everyone dismissing the findings seems to have something to sell. Portraying XMRV as just another virus is either ignorant or shameless. I've long been concerned that Dr. Teitelbaum cares more about profits than patients--no true CFS doctor would ever plaster the internet with "tired of being tired" ads because of the great harm done by the perception that CFS is mere tiredness. But to dismiss this contagious, cancer-causing retrovirus as incidental in order to promote one's own products is a violation of medical ethics.
  8. Christopher

    Christopher Senior Member

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    Yea it's a shame. At least there is this message board to help guide people towards the truth about these people.

    I'm very glad I didn't have the money to do the complete treatment at the FFC (visits, IV's, supplements) or else I would have filled their greedy little pockets. It's absolutely sickening the way these businessmen fill the suffering with false hopes in return for a "modest fee" that for some people reaches into the thousands of dollars. Disgraceful.

    There really needs to be a way to warn people about these centers before they waste what little money they have.
  9. Koan

    Koan Be the change.

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    Mine~

    Sir,

    You wrote
    "But we choose to not be distracted to reduce our focus to only a single infection type..."

    This statement, it seems, will be shown to be tantamount to telling an AIDS patient not to be distracted by HIV.

    You write as though you are blithely unaware of the difference between a common human herpes virus and the implications of infection with a rare retrovirus.

    Trivializing these findings protects no-one's interests but your own.

    Shame on you.
  10. Finch

    Finch Down With the Sickness

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    Great comments, everyone. I did go to the FFC and followed the treatment protocol prescribed beginning in November 2006 and lasting for about six months with no improvement. Long story short, I was told I was in the 10% that did not improve but that they'd keep trying.

    I came up with a treatment protocol I found elsewhere and was told I was my own best doctor. So I have been. But, of course, I'm not a doctor at all. I still use the FFC but only go once or twice a year so that the doctor there will continue prescribing for me. I don't use their protocol.

    The doctor is nice and caring as far as I can tell. She's not the original doctor, and I've only seen her one time so far. We'll see what she has to say at my next visit in a few weeks. It may be interesting - or not.
  11. Christopher

    Christopher Senior Member

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    Since you're in PA, do you go to the Philly one or is there another one in PA?
  12. Finch

    Finch Down With the Sickness

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    Hi Christopher - I'm at the other end of the state - I go to the one in Pittsburgh.
  13. Marylib

    Marylib Senior Member

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    The T. doctor

    Yes, his book had some helpful stuff in it, but I have to consider the source, and the motive.
    Marylib
  14. shrewsbury

    shrewsbury member

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    Warning: Harmful to people with ME/CFS

    dang - angry again. in out in out

    Just posted a looooong comment on Psychology Today with the above caption. It lost all my beautiful formatting.


    ah - fear-mongering, that's the word I was grasping for to describe his last sentence

    if:)
  15. Nina

    Nina Senior Member

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    islandfinn: Very well written! One of the very few long articles I had no difficulty reading as it is poignant and spot-on!

    Thanks!
  16. shrewsbury

    shrewsbury member

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    thanks Nina!

    (you should have seen it with all the beautiful formating, indents, bold................ - even more accessible)

    if:)
  17. Frank

    Frank Senior Member

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    Teitelbaum goes in the same closet as Reeves and Wessely
  18. Hysterical Woman

    Hysterical Woman Senior Member

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    Closet


    Could we lock that closet, please?
  19. Talking about coming out the closet, in the article that was posted the other day here about XMRV, there was such a great comment in the accompanying side-bar on the webpage.

    All these CFS patients are stigmatized; thats why they stay in the closet. I think were where we were 40 years ago with cancer, Mikovits said. It carried a stigma like CFS does.

    Source: http://www.rgj.com/article/20091031...edical-breakthrough-puts-Reno-in-spotlight---
  20. dannybex

    dannybex Senior Member

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    Jeez...

    Well, I've (partially) defended Tweetlebaum in the past, but this time he really was shameless, and the resulting article, shameful.

    Even though it is a blog, and not part of their regular publication, anger and/or disapproval should also be directed at Psychology Today, especially for allowing those direct links to T's website in the piece.

    Sheesh.

    d.

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