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Dr. T on the recent controversy

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by George, Jul 23, 2010.

  1. George

    George waitin' fer rabbits

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    I'm not incline to give Dr. T to many hit's so I'm pasting the article below. If you would like to support his blog please go to the following link.

    http://www.psychologytoday.com/blog/complementary-medicine/201007/xmrv-and-cfs-2nd-positive-study-fuels-more-controversy

    XMRV and CFS-A 2nd Positive Study Fuels More Controversy
    The truth about XMRV controversy
    Published on July 23, 2010

    The topic of XMRV and its possible link to chronic fatigue syndrome has been appearing in the news again. The media interest stems from multiple recent studies that appear to be coming to different conclusions on whether or not the XMRV-CFS linkage is there.

    In a study published earlier this month in Retrovirology, CDC researchers reported the absence of XMRV in the studys CFS patients and its control group. Another study whose publication has been temporarily blocked by the FDA and NIH contradicts this, finding that XMRV is often present in the blood of CFS patients.

    I have been following this closely. It is, unfortunately, a very highly charged topic that misses the undercurrents of what is really happening. We have a medical system that still has some "Flat Earth" advocates ― those who are trying to make believe CFS and fibromyalgia are not real illnesses. As has occurred in the past with many illnesses that afflict women more than men, and where a diagnostic lab test did not exist early in its exploration, some physicians tried to make believe the patient was simply crazy. This happened with multiple sclerosis (called by some "hysterical paralysis"), rheumatoid arthritis and more recently lupus. Now it is CFS and fibromyalgia patients turn to suffer.

    The source of the problem can even be seen in the medical term "hysteria," which is derived from the word "hystero," meaning uterus. If you are a woman, and the doctor doesn't know what's wrong with you, you're crazy.

    Attempting to invalidate this disabling and severe illness offers the busy physician an excuse to be lazy, which is easier than taking the time to properly learn about and care for patients with a complex illness especially when insurance companies often will not pay for spending the needed time. It also allows an excuse for insurance companies (health and disability) to avoid paying patients billions of dollars due to them. Unfortunately, these "benefits" come at horrific costs to the patients' health.

    The Simple Reality

    1. CFS and fibromyalgia are clearly very real and devastating physical conditions. This was proven in our published placebo controlled study which showed that an integrated treatment protocol helped 91% of patients with an average 90% increase in quality of life. As the patients receiving placebo showed minimal improvement, while the active treatment patients showed dramatic improvement, this is clearly a real and physical illness.

    We have effectively used the "SHINE Protocol" (Sleep, Hormonal support, Infections, Nutritional support, and Exercise as able) in over 15,000 patients at the Fibromyalgia and Fatigue Centers nationally. This protocol is offered by over 1,000 physicians nationwide as well.

    2. These syndromes include immune dysfunction, and many different infections are more common in CFS/FMS than in the healthy population, just as in other immune suppressed conditions such as AIDS. Basically, patients pick up many infectious "hitch hikers" because of the immune dysfunction. Some infections need to be treated, but most resolve as the immune system heals by treating the CFS/FMS itself.

    3. Given the controversy and implications, it is reasonable for the government (in this case the NIH and FDA) to take a bit of time to review both the positive and negative studies before release, though this is understandably very frustrating for patients. Unfortunately, the NIH and CDC have generated enormous (and I suspect often well deserved) mistrust in the CFS/FMS community. The question is whether the study review will be fair and honest, or if the data will be buried to protect insurance company profits. Unfortunately, since they have now quickly released the "XMRV negative" study for publication and are still holding back the "XMRV positive" study, it is again leaving many with CFS feeling like the government is ready to throw them under the bus again. It would have made more sense to have waited until the review was complete and then release both studies simultaneously.

    I would note that although I have found the individual researchers at the NIH and CDC to be good and well-meaning individuals, the cultures in both seem to discourage research that suggests CFS/FMS are anything but psychological illnesses. In fact, I suspect that a researcher showing these to be the real diseases they are might find their career growth at these agencies to be effectively over. The XMRV study was done by Dr. Harvey Alter, the highly-experienced Clinical Studies Chief at the Infectious Diseases and Immunogenetics Section of the Department of Transfusion Medicine at the NIH Clinical Center in Bethesda. Being a researcher in blood bank safety, he seemed unaware of this political undercurrent, which may sadly now come back and drown him.

    4. The "absence of evidence" for XMRV in some studies does not mean "evidence of absence." It simply means most labs do not know how to properly test for the virus. As I have blogged earlier, this could simply be controlled by the studies also sending blinded samples to the WPI (which did the initial positive study) ― half of the samples from CFS patients and half from healthy patients. If they can tell one group from the other in a statistically and clinically significant way, then we will have a clear answer. It is actually quite simple. Except for the politics.

    Love and blessings,

    Jacob Teitelbaum M.D.
     
  2. Recovery Soon

    Recovery Soon Senior Member

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    I went to the F&F clinics and was on Dr. "T"'s protocol- which did little but drain my bank account.

    I approached him after one of his lectures and asked very pointed questions about my lack of progress, and his actual cure rate.

    At first he was cordial. When I remained persistent and unyielding to his evasiveness and platitudes, he told me that I was "very driven" and his advice was that I "go home and examine the issues in my life." And actually said (as he lifted his arms up): "I don't want to know what they are."- like I was going to start discussing my life with him.

    All with a smile on his face- in FRONT OF TWO OTHER PEOPLE.

    He panders to the CFS community and gives us what we want to hear collectively- you've been victimized, yada yada yada- but individually he basically blamed me and my mind state for my condition.

    Unfortunately, I was a little saner than Dr "T" wanted me and my questions to be. He's used to wooing crowds- and I was demanding specificity.

    It's really tough to watch this guy undermine our condition in the media- He needs to focus on general fatigue OR CFS- but not both. Somehow the two get blended together we he speaks of them, which widens his product market to everyone who has ever been tired, which further disenfranchises us from serious medical consideration or support.

    Let's not forget- his first reaction was to call XMRV- "the disease of the month."
     
  3. Greggory Blundell

    Greggory Blundell *****

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    His blog is a not even thinly veiled sales pitch. He is pandering, and doing so sloppily.
     
  4. Riley

    Riley

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    LOL at 91% having 90% improvement. How can he even say that with a straight face? That's tantamount to saying that he can cure 9 out of 10 cases of CFS and FM. I guess someone should notify Time magazine about who to put on their next cover.
     
  5. George

    George waitin' fer rabbits

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    Ahhhhh, but he never says "cure" just "improvement". I wonder what he's going to do once there are boneifid treatments?
     
  6. Otis

    Otis Señor Mumbler

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    The man's greed is unbelievable. Talk about exploiting opportunites to pimp his SHINE to sell books, supplements and FFC contracts. Too bad he's so full of s**t while selling his SHINEola.
     
  7. Sean

    Sean Senior Member

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    Never been impressed by Dr T. This just confirms it.
     
  8. boomer

    boomer Senior Member

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    I had a bad experience using consulting services of Cheryl his assistant. couldn't believe it.
     
  9. gu3vara

    gu3vara Senior Member

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    Well, despite the obvious sale pitch for his SHINE protocol once again, he at least now seems to believe that XMRV is something serious to consider in CFS. This is a bit different from his initial position and he seems well-informed on what's going on now. Well, he better follow that closely cause his business model could be about to drown ;)
     
  10. JT1024

    JT1024 Senior Member

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    I went to one of his FFC clinics and it was all about the money. The clinic closed not too long after it was opened (<2 years?). I suspect the Boston market was a tough one for them.

    Interesting how he "advocates" for patients while peddling his protocols.
     
  11. glenp

    glenp "and this too shall pass"

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    I think he made a very good point here

    In fact, I suspect that a researcher showing these to be the real diseases they are might find their career growth at these agencies to be effectively over.
     
  12. cfssufferer

    cfssufferer

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    Respose to Dr. Teitelbaum's article

    Although the article by Dr. Teitelbaum argues against CFS being psychosomatic, his argument is contingent upon his own SHINE protocol helping CFS patients therefore CFS is not psychosomatic. A more sufficient argument that Dr. Teitelbaum has neglected would include the abundance of physical abnormalities supported by various tests confirming that CFS is indeed physiological.

    I would argue that good and well-meaning individuals wouldnt work for an agency that has caused millions of CFS patients around the world to suffer while they perform pseudo-experiements on a pseudo-defined CFS cohort. The consequences of the CDCs lack of true CFS research as well as CFS policies have resulted in much suffering.
    To define people as good and well-meaning is a moral qualification. The individuals have the free-will to choose where they work and to stop working for immoral projects. By purposefully working for an immoral project with an immoral ends would therefore contradict Dr. Teitelbaums comments that these are good and well meaning individuals.

    Although I am using equivocation here, I think it is humorous to say that both the NIH and CDC involve cultures, when the CDC didnt use culture! :D

    This method wouldnt necessarily work to solve the CFS-XMRV conundrum. The group that couldnt find XMRV would argue that the group that did find it either A. Contaminated the samples with XMRV, B. They found something other than XMRV but confused it with XMRV or C. XMRV was activated by something in the CFS patients blood. These arguments may not be strong but the experiment would not necessarily solve the bickering.

    The fact that the groups are not finding XMRV in any patients means that the methods are flawed. We would expect at least 4 patients to be XMRV positive for every 100 controls tested and if these 4 arent found, it points to flawed methodology. It is therefore not necessary to use Dr. Teitelbaums experimental method as we already know what the problem is.

    Finally I would be quite relieved if XMRV did cause CFS, if only for the fact that we might read an article by Dr. Teitelbaum that recommends treatment other than his own SHINE protocol. To be an objective researcher/doctor/scientist, one must look outside of their own theories and use objective statistics. Dr Teitelbaum uses pseudo-objective statistics in that he

    1. Does not quantify how much improved the 91% of CFS patients are.
    2. Does not document what CFS cohort he uses
    3. Continually perpetuates the misnomer of CF as opposed to CFS (which is another misnomer yet slightly less offensive.) Although it is refreshing to see him use the term CFS in this article as opposed to his classic use of CF

    I would be very sceptical if a Psychology website asked me to write an article for them on CFS. Even though I would argue against CFS being psychosomatic, CFS would be immediately implicated as psychosomatic by the articles presence in a psychology magazine. Psychologists should have no interest in CFS, retrovirologists are the group that should be learning about CFS.

    Overall, although Dr Teitelbaum argues for some valid conclusions (based on arguments not presented in his article), his arguments are sometimes flawed. Dr. Teitelbaum many months ago did reject the XMRV-CFS hypothesis citing various arguments. Many people responded highlighting why his arguments were flawed. He then changed his mind and took a more scientific viewpoint regarding XMRV-CFS. This is refreshing as many people with their own CFS theories are not willing to be objective and are too caught up in their own theories to objectively analyse other theories. I commend Dr Teitelbaum for this however his continual advertisement of the SHINE protocol is unwarranted.
     
  13. dsdmom

    dsdmom Senior Member

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    I don't think he will ever abandon SHINE. XMRV will fit in nicely to his 'Infection' part of SHINE. He'll just say that's just more proof that infections are key to solving this.

    My opinion anyway :)
     
  14. Recovery Soon

    Recovery Soon Senior Member

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    Something tells me his information is coming from this forum.
     
  15. Recovery Soon

    Recovery Soon Senior Member

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    BINGO. He will own every part of this by the time it's over- and write a book taking credit for it.

    Something like "XMRV SYMPTOM FREE- 1,2,3"
     
  16. cfssufferer

    cfssufferer

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    Like I said before, Dr. Teitelbaum will recommend treatments other than his SHINE protocol. He will probably continue recommending his SHINE protocol but also recommend antiretrovirals. Another option of his would be to focus his SHINE protocol on those who are XMRV negative and have CFS. Also people with run-the-mill fatigue may still be subject to SHINE.

    If Dr Teitelbaum does incorporate XMRV into the Infection part of SHINE, it will look (to outside observers) like XMRV only has a peripheral importance.
     
  17. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    At first he was cordial. When I remained persistent and unyielding to his evasiveness and platitudes, he told me that I was "very driven" and his advice was that I "go home and examine the issues in my life." And actually said (as he lifted his arms up): "I don't want to know what they are."- like I was going to start discussing my life with him.

    What a sad interaction Recovery Soon!

    I bought his book but never read it, just some stuff, I have a good Dr who actually sees patients and he has helped me greatly!
     
  18. Daffodil

    Daffodil Senior Member

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    lol he never loses an opportunity to try to make money. hasn't he made enough from us already?
     
  19. Kathi

    Kathi Senior Member

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    When his Pittsburgh Fibro and Fatigue Center caused my major heart attack with too much T3 medication without properly ramping it up slowly, all he was worried about was whether I would be suing or not. He told me that if I took his doctor, who was on medical probation by the state of PA for passing himself off as a board certified ER doctor, to task, many patients would be in health jeopardy. However, I was in health jeopardy and nearly died because of going to his clinic. Dr. Teitelbaum worked with my PCP in follow up because I refused to go to another one of his clinics. His treatments caused even more health damage and I was forced to go elsewhere. He and his group put me in congestive heart failure and furthered my decline.
    I believe he is a master at sales and marketing and needs to assess what harm he has done to me and other patients that had no where else to turn for help. If he is sincerely interested in helping, as one would want to believe, I think he has let his interest in fame and money cloud what is in the best interest of the patient. His Center took my illness and trivialized it as if it were not serious. In fact they claimed I was not ill because his doctor was not trained properly and had no idea how sick I really was. I am now in congestive heart failure and on social security when , I believe, I was on the road to recovery.
     
  20. lancelot

    lancelot Senior Member

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    I don't have a problem with Dr T or any doctor trying to help and i realize no one has the answers yet, but to claim to help 91% of patients by 90% with his $HINE protocol makes him look like a fool!!! If that was the case, we all be 90% cured!!!
     

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