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Teitelbaum ME/CFS/FM and Oprah

Discussion in 'General ME/CFS News' started by Cort, Aug 28, 2009.

  1. Recovery Soon

    Recovery Soon Senior Member

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    I have a poor opinion of Dr. "T" - the smug abbreviation alone is infruriating.
    I met Dr. "T" on my 35th birthday. Yes, he was warm, affable and willing to chat with anyone afterwards. I had suffered with CFS for about 6 months at that point and was really freaked out by the prospect of living with it for the rest of my life. When I began pushing Dr. "T" on specifics regarding cure rates, he told me in front of 2 other people that my problem was that I was very "driven". I basically told him "You're Goddamn right, I'm driven. Six months ago I was in a boxing ring and now I can barely get out of bed in the morning. I need some hard data." Basically, he blamed my personality for CFS (more than once in a very embarrassing/borderline accusatory manner) and encouraged me to continue the FFC route, which ultimately drained thousands upon thousands out of my bank account, and did nothing to for my condition. In fact, My FFC physician ended up leaving FFC, privately confiding in me that he "couldn't emotionally watch people not get better any longer."

    I don't think the title of Teitelbaum's book can be justified by clever Marketing. I think it is willfull deception at the expense of desperate people, and he knows perfectly well what he is doing. I can remember the excitement I found when finding it and reading the first few pages. Finally an end to this nightmare, I thought. Just a series of disappointments I would later find.

    Dr. "T" is a marketing machine, and his potential market is expanded to every person who feels a little run down living the natural rigors of life, which is the entire population. That's why he drops "Syndrome" from CFS. He knows there is a serious condition, that is characterized by severe illness, and he has no problem exploiting it for all its worth. Rather than admit his gross limitations, he spits out an encyclopedia of herbs in a Rain Main sort of delivery, which dazzles the masses, and leaves the sick falsely optimistic.

    Dr "T" needs to put up or shut up. Cart out those you have cured, or sit back down and change the title of your book to "From Fatigued to Functional in an extreme minority of cases at a prohibitively expensive pricetag"
     
  2. Frickly

    Frickly Senior Member

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    Recovery soon

    I don't blame you for being angry. It makes me so mad to hear that our personalities are what cause us to be ill. There are alot of theories about the cause of CFS but I am sure that our personality is not one of them. Thanks for sharing your story as I will keep it in mind when considering new treatments. Especially if they are expensive.
     
  3. Navid

    Navid Senior Member

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    To recovery Soon

    You are an excellent writer...strong and concise. love this line:

    Dr "T" needs to put up or shut up. Cart out those you have cured, or sit back down and change the title of your book to "From Fatigued to Functional in an extreme minority of cases at a prohibitively expensive pricetag"

    Altho I think you can replace Dr. T's name with almost any doctor out there : )

    regards, lisag
     
  4. PWB

    PWB

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    Teitelbaum talks

    Myself and others from a local CFS support group went to two of his talks. We were all unimpressed, and noted we had tried many of the methods he uses, without significant improvement.

    He seemed to be heavily interested in selling his dubious supplements. The ingredients seemed mediocre, but the price high. I got some with a 50% off coupon, and they really didn't help any.

    His knowledge of CFS research and theories seemed limited to his own. I have read his book, and it seemed only half right. Like him recommending Pepto Bismal, but ignoring the aluminum and other hazardous ingredients in it.

    I have a psychology degree, and I can say for a fact that CFS is a real disease, not a psychological problem. I myself got it working as an undercover PI in two pharmacies, where I was exposed to many viruses.

    I'm sorry he was rude to a person in our forum. He acted the same after his workshops here.
     
  5. dannybex

    dannybex Senior Member

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    Hi Frickly...

    I too totally understand the anger too...totally!

    But I don't think he's suggesting in any way that THAT'S the sole cause...you know? He's not saying that we're sick solely because we're driven, or perfectionists, or angry, or people pleasers...but that some of those traits -- if we have them -- might possibly get in the way of our healing and/or interfere with immune function...which other doctors (and not the CBT types) and studies are starting to confirm.

    We're so conditioned to expect a pill or maybe six, to 'cure' us, without having to change the way we live...at least until we get 'better', so while of course I can't speak for him, I think that's what he was suggesting.

    And of all the people (6-8) that I know who are anywhere from 70-100% recovered, working on changing the emotional stuff, and resting even when they didn't feel like it, was a part of all of their recoveries. Some have been able to go back to handling quite a bit of a driven, stressful life, while others make a point to avoid it when they see it coming. We're all different.

    That being said, his book title IS ridiculous, and insulting (love RS's title!), his 'clinical study' very flawed, and I wouldn't go near the FFC's not only because of the price, but because of their not so stellar track record, even if he didn't sign on until a couple years ago. (I do know one guy who was sick for 30 years, who didn't start to get better until he went to the FFC. But that's one out of about 10, and he's kind of plateaued.)

    And I totally agree with Recovery Soon's comment that Teitelbaum could at least drag out a few of his successes -- maybe feature a half dozen or so recovered patients every month or so on his website. Even if most patients are reluctant, after practicing for 30 years, he shouldn't have too much trouble finding them.

    And PWB, he knows it's a real illness...but is just acknowledging a mind-body aspect that is so often ignored (and in fairness might not apply in a lot of cases) that might be a small part of the picture. I don't think he's ever said it's 'all in our heads' like many psychiatrists have said. It's also my understanding that he makes no income from putting his name on supplements...that his percentage is donated to research. I think... :)

    (Jeez, I'm starting to sound like his publicist.) :(

    Anyway, it's good to hear of your encounters...sad to hear he was rude, but always good to hear the positives and the negatives of any issue/doctor...

    Dan
     
  6. Frickly

    Frickly Senior Member

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    Dannybex and all,

    Watching some interviews I do think he blurs the line between Chronic Fatigue and Chronic Fatigue syndrome. I wish he would be more direct in all his interviews about the difference in these two conditions.

    I have felt for along time that the extra stress in my life and my outgoing personality speeded up my disease but by no means caused it. Unfortunatly, I think some (CDC) take that extra leap and it makes many uncomfortable about this conversation. For whatever reason, our bodies are not capable of producing the energy it needs.

    Anyway....I have taken what I need from Dr. T and left the rest behind. His website was helpful and I have taken his multi and b vitamin. I do not beleive any doctor has the answer (cure), yet. However, I do beleive we are getting close.:)
     
  7. Stuart

    Stuart Senior Member

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    Beyond Frustration

    Yes, it is called the American Medical Non-System the For Profit, Fee For Service Illness Industry, profiting on test, treatment, prescription, office visit after office visit in which very little really happens. It is a sham.

    Very few doctors are good at or seem to care much about diagnosis, it is more about symptom x = pill y, and don't bother me about the dozens of other symptoms. I have actually heard the statement "there is no disease with all those symptoms" - subtext, you are a hypochondriac, see a shrink, take an antidepressant.

    The only real pill we need to take is the Red Pill, as in see the Matrix for what it is.
    :mad:
     
  8. Jody

    Jody Senior Member

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    Stuart,

    I loved the Matrix movie and am highly in favour of the red pill. :)

    That's the only pill I would unreservedly recommend for CFS, and it should be taken by many of the doctors and researchers out there.
     
  9. Recovery Soon

    Recovery Soon Senior Member

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    For the record, I do believe personality traits can contribute to diseases. In fact, I use the Gupta Program, and have found it to be effective.

    I don't believe such theories imply that CFS is just "in the head" as much as they point to psychological/emotional triggers which can influence the body and immune system. Ultimately the disease is in the body. No one is making up a sore throat in their head.

    My problem with Dr "T's" assessment of my personality was that is was done in response to direct, unwavering, and lucid questioning, all of which was inconvenient to him.

    Dr. "T" is used to swooning, and I am used to straight answers. It made for a bad combination.
     
  10. Aftermath

    Aftermath Guest

    Very Well Put

    Very well put. The stuff he puts out is beyond optimistic. Teitelbaum constantly trivializes this illness while he laughs all the way to the bank.

    Maybe he'll choke on a sip of Corvalen-M.
     
  11. Wayne

    Wayne Senior Member

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    Chronic Fatigue vs. ME/CFS

    Hi Recovery Soon,

    Welcome to this board. I sure enjoyed your post here about your meeting with Dr. "T". Just wondering, were you really a boxer? I can sort of believe it by the style of your writing. :) It's got sort of a "punchiness" to it, which I like! :)

    Speaking of personality traits, I seem to remember Dr. Cheney once commenting that he had not noticed a difference in the rate of Type A or Type B people developing ME/CFS, but did notice that Type A people were less willing to scale back once they started going further into the illness, something that often made things worse.

    I'll say one thing for Dr. T and his book. It helped me (although not as much as the book “Safe Uses of Cortisol” by William Jeffries) get me tuned into my severe adrenal fatigue (insufficiency, weakness, etc.). I can see for some people who are dealing only with chronic fatigue and/or adrenal insufficiency, as opposed to ME/CFS, this particular section could be helpful. As well as other sections on thyroid function, etc.

    So in my mind, Dr. T and his flaws, along with his book and all its flaws, probably do help a certain number of people. Some with chronic fatigue can probably be helped a lot. For those with ME/CFS, well, I think the record is pretty clear.

    Wayne
     
  12. Amelia

    Amelia Guest

    Is Chronic Fatigue a syndrome?

    //////Secondly, and probably worse, Dr. Teitelbaum continuously referred to CFS as chronic fatigue (no syndrome). This is an extremely poor choice in my opinion.///


    I've been told a number of times by doctors that when the word 'syndrome' is used by medical professionals, they may as well say 'hysteria' because basically doctors will use the word syndrome for conditions they don't take too seriously or simply haven't a clue about.

    So when Dr Teitelbaum left out the word 'syndrome' he probably meant that in a kind way (whatever else he may be up to).

    To be chronically fatigued is a state of being. Chronic Fatigue is not an illness. The medical industry knows this. Chronic fatigue is a symptom of a condition nobody (other than God) has a clue about.

    The fact that no-one has been able to cure (other than maybe Mike's physician) or properly diagnose or find an appropriate name for this horrible illness doesn't make this chronically fatigued condition any less serious.

    Any terminal disease or serious chronic illness will give any one to a greater or lesser extent the kind of symptoms we experience, i.e. organs not functioning properly on an ongoing basis. It all sucks but chronic fatigue is not a disease, it is a very sad and frustrating state of being. And when a doctor says chronic fatigue syndrome, beware, syndromes aren't taken that seriously in the medical industry. Trust me on that one.

    ps syndrome means simply a collection of symptoms.
     
  13. LaurelB

    LaurelB Senior Member

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    Don't forget that AIDS is a syndrome (auto-immune deficiency syndrome), and yet that is recognized as a very serious (and deadly) disease. Sudden arrhythmia syndrome is also a "syndrome" that causes death. And of course, there's sudden infant death syndrome. So some syndromes are taken very seriously. But put "chronic fatigue" in front of it, and it becomes a joke. :)
     
  14. Recovery Soon

    Recovery Soon Senior Member

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    I think you're giving Teitelbaum a lot of credit. It seems highly improbable to me that he drops "Syndrome" to reduce cynicism. And more plausible, and consistent with who he is, that he does so to increase book/product sales.

    To be fair, I should also include that I think his F to F powder is pretty good.

    BTW- Wayne...I trained in a boxing gym, but was not a pro or anything.
     
  15. klutzo

    klutzo Senior Member

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    Dr. Teitelbaum, et al.....

    Hi Wayne,
    I am not defending Dr. Teitelbaum's approach here, but did want to point out that because of his illness he had to drop out of college for awhile and was so poor that he lived in his car, so he does know how this effects our finances. He also routinely answers emails from anyone who emails him from his website, without charging for it.

    I believe he is still Director of the FFC Clinics. I have heard him justify the high cost of the first visit at an FFC Clinic by saying that the appt. lasts for six hours. From what I heard about cost, and someone correct me if I have it wrong, it still works out to $500 an hour. I don't understand how someone who knows what this illness does to the ability to earn a living can sleep at night while charging that much.

    This attitude is not rare either. We have only two Lyme doctors in my area. One actually takes insurance and indulges in creative coding to get the treatment paid for. I have no quarrels with him. The other however, despite the fact that his son almost died from Lyme, charges $9 per minute for appts. that always last at least an hour. This includes phone appts. where you do not even see him or get examined.

    Unfortunately, doctors who bilk people like that only give fuel to the IDSA when they charge that chronic Lyme treating doctors are quacks making a fortune off those with unexplained illness who are deluded into thinking they have non-existent chronic Lyme. I hate it that this gouging enables any credence to be given to the IDSA's ridiculous lies about the existence of chronic Lyme.

    klutzo
     
  16. Aftermath

    Aftermath Guest

    Abusive Pricing

    I'd still like to have him show us someone who had positive brain SPECT and tilt table tests who is now "fantastic."

    Spending time with someone should not be considered a legitimate justification for high prices. The only legitimate justification for this kind of pricing is success in treatment--something that Teitelbaum and FFC are not exactly famous for.

    The outrageous fees often charged by the few doctors who treat this illness are truly sickening. Regrettably, it's supply and demand, and the supply is exceedingly small.

    I could understand the justification if people were actually getting better. I've seen countless stories from those who were treated by FFC. They report little improvement in their symptoms and ending up a lot lighter in the wallet.

    Dr. Susan Levine in NYC is the only physician I've seen throughout this illness that charged normal rates for an infectious disease physician--rates that insurance will actually reimburse a decent chunk of.

    After seeing doctor after doctor (I've seen most of the big names), I have given up on doctor visits until there is a biomarker and/or treatment validated by peer reviewed research.
     
  17. klutzo

    klutzo Senior Member

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    Ffc

    Hi Aftermath,
    I too have read countless stories of those who went to FFC and got little help. I wonder if people who got help are as likely to post though. On the Lyme forums, for example, those who achieve remission tend to disappear and get on with their lives, so if you read the forums, it seems like nobody gets better. I doubt that is the case here, but I don't know.

    klutzo
     
  18. andreamarie

    andreamarie Senior Member

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    The F&F center in the Boston area opened and closed within a year which seemed suspicious to me. I cannot find out why. Because of the expense I decided to wait and see what results patients have and poof! it twas gone. The doc I saw for CFS for over ten years saw many high powered type A's and said she preferred them because they followed regimens the way they had acted before they got sick.
     
  19. _Kim_

    _Kim_ Guest

    Aftermath, thanks for recommending Dr. Susan Levine. I had my first visit with her today and she was great. I arrived early and she was able to see me even before my scheduled time. She asked good questions, did an exam and drew some blood to test me for active viruses. Because she didn't need to spend a whole lot of time with me - she even charged me $100 less than her typical initial consultation fee. What a kind doctor!
     
  20. dannybex

    dannybex Senior Member

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    I agree Aftermath, but specifically with regards to fees and outcomes, practically (almost) the same thing could be said about Cheney. His fees are astronomical, yet even he admitted to the NCF a year and half ago, when asked how many of his patients were cured, answered "Zero". Perhaps that is changing with his latest protocol theories/treatments (which are even more astronomical in price).

    I do know one guy, who has been sick for 32 years, who didn't find any relief until he went to the F&F center in the Seattle/Bellevue area. Actually, make that 3 people -- who found varying degrees of help. One went off with her test results to work with specialists, and has since improved a great deal, so I don't know if that can be attributed to the F&F. But she's hiking in the summer and cross country skiing in the winter, and is in her sixties. The first guy has improved by about 65%...and has remained at that level for the past 2 years...which he is happy with, as nothing had helped him in the previous 29-30 years. Plus everyone in our support group can see the change...he's lost weight, he's not as physically uncomfortable, and hasn't come to most meetings this year, unless we have a new speaker...or major news like the XMRV stuff.

    I think part of the high cost (with any doctor) goes to malpractice insurance, but that's just a part, or else Levine wouldn't be able to stay in business, as I'm sure she must have malpractice insurance as well. Another reason for the high cost with the F&F centers is their bizarre idea to test for everything under the sun (often taking 32 vials of blood), and then throwing their medicine and supplement cabinet at you, instead of asking "Why are you hypothyroid, etc.?"...i.e., taking things step by step.

    But the MAIN reason, imho, for their high cost is that the patient is paying for new clinics to be set up, so they can expand into other cities, and maybe even countries. They're paying for all that overhead, all the advertising. Seems to me that isn't working, and perhaps that's the reason Holtorff left (sold?) the company he started only 5 years ago. (I often wonder if he ever had CFS/ME like he claimed, as his was resolved by thyroid meds...?)

    Personally, I wouldn't go there if I could afford it. There are other doctors (like Levine, Buscher, etc.) that are hard to find perhaps, but have much better results, for a lot less money.
     

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