Teitelbaum ME/CFS/FM and Oprah

[Cort]

From End Fatigue blog (and Dr. Teitelbaum) - some good recommendations. Let's move this article to the top of the pile (and get CFS in this media giant's focus). Just click on the article below.

AT LAST! Oprah Magazine covers fibromyalgia — Mehmet Oz praises Dr. T’s approach

We appreciate that Dr. Oz and Oprah are now starting to address the hidden epidemics of CFS and fibromyalgia, bringing hope to the approximately 12 million suffering and often disabled Americans (mostly women), who till now have been rendered invisible by our healthcare industry.

Dr. Mehmet Oz, who is wonderful, begins his column by addressing this issue head on in his brand new O, the Oprah Magazine column. It says volumes that this is the first topic he chose to cover, and that he began by interviewing 4 key researchers in the field who have very different perspectives, to give readers an overview. We are also very honored that of the 4, he noted: "I'm more impressed by Teitelbaum's supplement regimen, and not only because he has tested his theories: I've put patients on this program with very good results."

Read Dr. Oz's article "4 Treatments for Fibromyalgia" at O, the Oprah Magazine online.

http://www.oprah.com/article/omagazine/200909-omag-dr-oz-fibromyalgia

Let's encourage Dr. Oz and Oprah to continue covering CFS/FMS. You can help by reading the article at the link above, then leaving a note thanking them covering this topic. Ask friends who have or care about CFS/FMS to do the same. Oprah's website measures responses to articles, and an outpouring of positive response will encourage Oprah's team to increase coverage of CFS/FMS. Let's see if we can move this to their "Top Read" articles section!

 

[Jody]

Good idea about posting comments over on Oprah's website.

I found 4 articles on FM, posted 4 comments.

 

[MEKoan]

Fingers crossed for M.E.

Mehmet Oz praises Dr. Ts approach

I've always liked and admired Mehmet Oz.

I do not have similar admiration for Travis Stork, but never mind

Mehmet Oz is not ego ridden but is curious, intelligent, open minded and remarkably conscious. He's an impressive guy.

Nevertheless...

we wait

Eyes Crossed!

 

[Warbler512]

The Curtain of Oz?

I tried responding to Oz's fibromites via his blog. Perhaps it was coincidence that suddenly I had problems getting my thoughts posted . I've admired Dr. Oz a lot, for his delivery, presentation, tackling of tough issues, and especially talking candidly with the chronically ill - Michael J. Fox and Montel Williams come to mind as excellent episodes while on Oprah. It takes quite a guy to do that.

This wasn't nearly in the same ballpark though. For starters, if Oz knows people who've been helped by Teitlebaum, I'm happy for those people, for however long it lasts. Personally, I think Teitlebaum, his book, and his EndFatigue "centers" with their huge marketing effort smack of commercialized holistic nonsense disguised with someone else's real research while plugging non peer-reviewed "results." I was impressed by him early on in my illness, but following "doctors" like him only drained my bank account really fast, and led me away from straighter arrows who could have gotten my disability a lot faster, doctors willing to admit the real deal.

There are some who say NAET has helped them. It's got to be one of the more glamorous snake oil schemes on the planet, with a veil of seductive pseudo-science (not even that, really) which truly preys on the sick. Even if you stripped that garbage off, I think bonafide accupunture as commonly practiced has its limits with us.

Worst of all was the mixing of Klimas and Jason with these cats. The former aren't known so much for "fibromyalgia," which is perceived as relatively benign (partly why it's more medically accepted), but CFS/ME - which they know and we know, kills. Klimas is from the AIDS world. With Dr. Oleske, also from the AIDS world, Dr. Jason was brave enough to challenge the CDC at the CFSAC, citing children with ME as young as 5 for whom life "stress" was obviously hardly a factor. It was Jason who, besides writing an excellent medical journal paper calling for subtyping, had an article published in a womens magazine saying he believes CFS/ME cuts the lifespan by about a decade, using a memorial list.

Contrary to Teitlebaum and Nambudripad, these are serious doctors studying an illness spectrum which they admit has very morbid results. Sure, they'll have something to say about FM too, but from the Oz article one couldn't make out any distinctions. Surely, Oz could have gotten someone from Cedar Sinai's outpatient treatment program or anyone doling out Lyrica to talk about FM a lot more. This was just a blending of syndromes that furthered public ignorance, and showed Oz either doesn't know as much as he ought to, or worse. I wouldn't call it good advocacy for anyone's sake.

We've had 20 years of such nonsense despite the research. It may not be healthy to comtemplate the morbidity of our illness every waking moment, but putting our heads in the sand isn't making it disappear. There's a reason you went to the CFSAC and testified. We have to keep our eye on the ball, and help others make out that ball in front of blinding lights.

 

[Aftermath]

Teitelbaum

Personally, I think Teitlebaum, his book, and his EndFatigue "centers" with their huge marketing effort smack of commercialized holistic nonsense disguised with someone else's real research while plugging non peer-reviewed "results." I was impressed by him early on in my illness, but following "doctors" like him only drained my bank account really fast, and led me away from straighter arrows who could have gotten my disability a lot faster, doctors willing to admit the real deal.

...

We've had 20 years of such nonsense despite the research. It may not be healthy to contemplate the morbidity of our illness every waking moment, but putting our heads in the sand isn't making it disappear. There's a reason you went to the CFSAC and testified. We have to keep our eye on the ball, and help others make out that ball in front of blinding lights.

Totally agreed. Teitelbaum and his businesses have charged patients a ton of money. From that, I have yet to see a verified claim of recovery (e.g. reversed brain SPECT scan, tilt table, etc).

He is definitely involved in snake oil product sales as well.

Take, for example, his "Corvalen" line of d-ribose (sugar) products that are pitched as a tremendous help to those with this illness.

The "study" that he constantly refers to did not even involve the use of a control group and was not published in a peer reviewed academic journal.

I have personally spent thousands of dollars on nutritional supplements that have done nothing to improve my health. I will not be doing so again without seeing the efficacy of such products demonstrated in a placebo-controlled peer reviewed study. Nutritional supplements are no more a cure (or even an effective treatment) for this illness than they are for AIDS and cancer.

The ability to "admit the real deal" that you refer to is, indeed, rare in physicians who treat this illness.

Dr. Susan Levine of NYC has a lot of negative things posted about her on another forum because she tells those who have been sick for more than a year or so that chance of recovery is very remote.

They refer to her as a "fatalist," etc. In my opinion, she is a realist--and I prefer a realist to someone who will give me false hope (and drain my wallet at the same time).

This is a real illness. It has a real cause(s) that has yet to be elucidated. What we need now is real research toward illuminating that pathway, not people who get in front of a mic and pitch high-profit vitamins as an effective treatment.

 

[shiso]

I have to agree with Aftermath's take on Dr. Teitelbaum. He seems well-intentioned and sincere, but the combination of his super-optimistic marketing (which takes advantage of a real familiarity with the symptoms of the disease) and the lack of real scientific research underlying his treatment recommendations or evidence of success with real ME/CFS patients (as opposed to those with mere chronic fatigue or pain issues stemming from treatable health problems) makes me question his ideas.

The first thing I did when I was diagnosed almost a year ago was to buy his book and visit his website. The enthusiasm of both gave me false hope and underplayed the seriousness of the disease. I did the online questionnaire on his website (which cost money) and ordered a bunch of supplements supposedly tailored to my needs. None of them did a thing for me. I can imagine many others have done the same especially early on in their illness, especially because his marketing is so effective. And I think it's only human to resent the experience (for myself and others), even if he is sincerely trying to help and believes in his therapies.

 

[shiso]

Sorry - my above comment was probably more appropriate for the separate recent thread on Teitelbaum.

I have no informed opinion about Dr. Oz, but I do think that introducing responsible, real information into the mainstream media by reputable doctors (Oprah's immense influence in the US cannot be underestimated!) about CFS and FM are great ideas.

 

[Finch]

My two issues with Dr. Teitelbaum

I watched an interview with Dr. Teitelbaum once. It seemed as though he was saying a lot of good things, but he did two things that completely toppled any respect I might have gained for him from this particular interview.

First, after he attempted to describe the level of fatigue experienced by people with CFS and the inability to do much more than rest, the interviewer, as we would expect, cheerfully exclaimed that she needed to have some of that! Dr. Teitelbaum said nothing in response to correct her.

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 haven't read Dr. Teitelbaum's books, but the title "From Fatigued to Fantastic!," especially with the exclamation point, is also simply too much for me. The advice in the book may be sound, but the title is very much over the top.

Simple errors like this would keep me, at least, from believing that Dr. Teitelbaum is going about things in the right way. It has kept me from looking into his theories.

I should add that I've been treated through the Fibromyalgia and Fatigue Centers, with which Dr. Teitelbaum was, and I believe still is, affiliated. Although their treatment plan did not help me, they are willing to work with me with another treatment plan that I've requested, so they are at least open minded. The original treatment was very costly to me, but now I'm only going in once a year for follow up, so I'm not spending big bucks there.

 

[MEKoan]

yes

I've always been a little afraid when people clamored for attention by Oprah. It seemed not to occur to people that it could go horribly wrong.

She gave her coveted Oprah book nod to a book by A. Manette Ansay who also wrote "Limbo" a telling of a long period of debilitating illness which remains, to this day, undiagnosed. From Ansay's website

"After graduating from Port Washington High School in 1982, I attended the Peabody Conservatory of Music as a piano performance major, but I was forced to leave in 1984 as a result of increasing health problems. By the fall of ‘85, I was unable to walk, and at that time I was (mis)diagnosed with MS. I wound up bedridden (I lived with my parents) until spring of ‘87, when I was able to get around again using a wheelchair. My health improved through the late ’80s and seems to have stabilized since the late ’90s. Though I have occasional flare-ups, I am basically in good health. There’s a theory that I had some kind of immune reaction from a series of inoculations I’d received, but this is speculation: I still don’t really know what happened to me. At any rate, by the time I was 23, it was clear to me that I needed to find something I could do sitting down."

I reviewed this book and was struck by the very real possibility that she had ME. At that time, I had been diaguessed with MS, too, so my ME radar was not as attuned as it might have been. In the bio, quoted above, from her blog she goes on to talk about writing as though she simply got on with it once she started and also taught without difficulty but her health improved painfully slowly and it was all a great struggle.

Anyway, Oprah handled the discussion about her illness well. Of course, it's one thing to say you have a mystery illness which informs your writing and makes you just a little bit more interesting and quite another to come out and say you have a contentious illness that some believe is not real.

I've never trusted that Oprah, unless she experienced it herself, or loved and trusted someone who did, would be able to address this topic without suggesting that sufferers were experiencing some crisis of the soul. Did she not consider her own thyroid issues to be, in part, a result of something like this.

Having the benefit of the comments here, and having read the little piece, I agree that we have reason to remain vigilant. It is not enough just to say anything. It is very important that they say accurate things. Her, and by extension his, influence is very powerful.

Peace out,
Koan

 

[Wayne]

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 haven't read Dr. Teitelbaum's books, but the title "From Fatigued to Fantastic!," especially with the exclamation point, is also simply too much for me. The advice in the book may be sound, but the title is very much over the top.

Hi Finch,

First of all, welcome to this forum. I enjoyed your first post here and look forward to reading more from you.

I have many of the same problems with Teitelbaum that others have mentioned here. I suspect he is basing a lot of his perspectives on his own experience with CFS. My take of his own CFS description is that he probably did not have what I would refer to as "core" ME/CFS. This I believe likely limits some of his understanding about the totality of this illness.

Part of this totality includes some of the devastating financial problems that arise as a result of having this illness. When I consider his high fees and high cost supplements, it's been disappointing that he has not conducted himself in a way that would indicate that he understands the totality of the devastation that so many with ME/CFS endure.

Again, welcome!

Wayne

 

[Finch]

Hi Wayne!

Hi Wayne, and thank you for the welcome. I hope to post my introduction and ME/CFS story before too long.

One other observation that is simply my own is that Dr. Teitelbaum and the Fibromyalgia and Fatigue Centers may be much more helpful for people with fibromyalgia than for people with ME/CFS. If they are helpful for people with fibro, then they are certainly doing a lot of good. They (the FFC) were rather shocked that all they tried didn't work for me, as I followed the program faithfully and with great optimism. I just had no results.

 

[MEKoan]

Hi Finch,

We were posting at the same time. I agree with all you said.

I have always found the title "Fatigued to Fantastic" deeply problematic but that is about all I know about Teitelbaum or the Centres. "Fatigued to Fantastic" was as far as I could get - I was never interested in what came after that. I figured if it was on the level I'd find out soon enough and, if not, I would spare myself the agravation.

Thank you for sharing your experience. I look forward to hearing your story.

Peace

 

[Cort]

The Fibro Fatigue Centers seem to be covering all the bases; infections, hormone issues, heavy metals, blood coagulations....they seem to be doing the right things...but its hard to find people with ME/CFS who have been helped signficantly by them. I think its kind of odd....(and suggests that we really don't know alot about this disorder). I'm sure they're out there....aren't they?

Yes this should be a Teitelbaum thread.

 

[Jody]

Is it just my tired cynicism, or does it seems like there's an industry being built that has everything to do with building empires and precious little to do with the actual illnesses of actual people?

 

[MEKoan]

Hi All

In my usual confused state, I replied to another thread re Dr. T and have no idea where that was. Like Cort, I can't but think he's got a handle on many of the pertinent pieces but I think something really fundamental is missing.

It's curious that the centres keep going even though, as far as I can tell, people are not being cured. If he offering a helpful, but not curative, treatment this would make sense but, "From Fatigued to Fantastic" (the title) says something else.

It's such a pity! I'd love to be fantastic!

 

[dannybex]

Don't hate me...

...but while I agree with many sentiments posted here, I feel the need to at least partially defend poor Dr. T., (well, he's not exactly poor)...

Yes, the name of his book is very off-putting. I flinched for years whenever I heard his name, because of that #**@!! title.

Also, his "study" which he has touted for years, has more holes than a Dunkin' Donuts factory.

But then around 2 years ago I heard he was coming here to Seattle, after he joined the FFC Clinics as their advisor (remember, he didn't start those factories, he signed on 3 years after they were in operation). I went downtown with several CFS support group members to hear him speak. And my opinion of him changed quite a bit.

I thought he'd come off as a slick salesman, but instead he seemed very genuine, warm, and almost without ego. He answered many of our individual questions as people were still filing into the auditorium. What was most intriguing to me was how he could just look at someone and suggest what their underlying problems might be. He read me like a book...he was right on with his brief analysis/diagnosis (without knowing what tests I had had done).

Sure, he's not perfect, and the semantics are not always the best, but during the talk he gave here, he repeatedly spoke of CFS and Fibro, not just CF.

True, I don't know anyone who was personally treated by Dr. T., and for the most part, the 2 or 3 people who have gone to the FFC have had mixed but at least somewhat positive results (although I think the FFC's take waaaaay too much blood, and run too many tests at once), but again, Teitelbaum didn't start or doesn't own or manage the centers...he's just an advisor...kind of a figurehead. It's interesting that the founders, or at least one of them (Hormone, I mean, Holtorf) left the company he founded right when the majority of complaints started piling up.

At the same time, I don't know of a single patient of Dr. Cheney's who has recovered. Even Cheney was quoted by the NCF, when asked how any of his patients had recovered, replied "None". Why anyone would consider seeing him, especially considering his fees, is just...puzzling.

Meanwhile, I believe Teitelbaum's website has a 'test' one can take, which will then give recommendations based on the answered questions, which is offered free of charge.

So...that's my two cents.

Dan

 

[Frickly]

My two cents...

I don't know much about these centers and would not and could not spend the amount of money some of them charge. When I was searching for a way to help myself I ran across Dr. T's website and did his free online questionaire. It gave me a long report of possible issues for me and what supplements I should take in order of importance. This gave me a place to start.

I think these centers have the right idea as they are looking at the whole body which is next to impossible to find in mainstream medicine. It's a shame that it is so expensive. I have to wonder about these docs that charge so much.

 

[LaurelB]

I have the same concerns about Dr. T that many have expressed here. I worry a bit that he appears to be the person Dr. Oz is conferring with in regards to both CFS and FM. Last season, on a show about aging, they did a very brief segment about a woman who suffered from FM and was now better after (I believe) going to one of Dr. T's clinics. A bit odd that FM/CFS would be included on a show about aging, but okay. Anyway, Dr. Oz said something to the affect of how he used to not think CFS was a real problem, but that Dr. T has opened his eyes on it some.

While that is all very good, of course, my concern is that Dr. T claims a 90% success rate. So if Dr. T goes on Dr. Oz's or Oprah's show to talk about CFS at some point, how much of a problem is CFS going to appear to be if they claim a 90% cure rate?

I am bothered by his referral to it as "chronic fatigue" as well, and find his ads "tired of being tired?" a bit on the annoying side, as it emphasizes the idea that we are all just sleepy. I realize it's a business, and he wants people with all sorts of fatiguing symptoms to come to his centers (not just those with ME/CFS), but I still wish they'd be more respectful in their ads and emphasize CFS as a serious illness and not just a symptom.

I think Dr. T means well, and they seem to be doing some good things treatment-wise... but I've done much of the treatments in his book (my former doctor was trained by him)... and, well... nada. But, we are all different and respond differently to things. Hopefully many are indeed getting well through some of his therapies.

 

[Cort]

I think Dr. Teitelbaum does mean well. I agree Danny - he comes across as very warm and caring in person - he seems like a great guy. The fact that he's such a salesman as well shouldn't detract much from that. (His sales proclivities make him almost a picture of derision at times - that's just the way he is).

He seems to have an almost encyclopedic knowledge of ME/CFS, though. He also has this computer program which is relatively inexpensive which anyone can use to get a treatment plan.

I think we just bump up against the wall with him the same we do with virtually everyone: they just don't know enough yet. I'll bet he helps alot of people to some degree.

It's unfortunate that this scatter shot approach to ME/CFS; testing everything and then adding on mounds and mounds of supplements - is so darn expensive.

 

[susan]

Dr.T may have his failings but any advertising about our illness has to be good. I agree I wish they would concentrate on the other horrible facets of this illness instead of fatigue. I think the fact that the Fatigue centres exist is testement to the legitimacy of the illness in itself. Any advertising is good. We just need a Michael J. Fox kind of CFS person to go on Oprah to highlight this appaling illness., hopefully dramatically rolled out on a bed to sombre music.

I realise these fatigue centres cost a lot of money, but there are people wandering around for 20 yrs going from one Dr to another never getting proper testing for any of their symptoms. Over that period a lot of money is spent on drugs and supplements and DRS fees etc. The centres may not cure you much but they may be able to plug one or two dykes.

I wish we had the centres in our country as a ONE STOP SHOP. In our support group when I mention to folk to get a certain test their eyes glaze over. If their Dr never suggests it they do nothing, but continue Dr shopping that can go on for years to no avail and lots of money goes down the shute.

They are just as confused as the their ignorant DRs. The lost productivity must be enormous. I have a big issue with the fact that our taxes pay for a health system that does not work for us as Dorothy Wall states in her book.

Most drugs are useless to us. What we need are supplements and other stuff that is not covered by medical as it is considered not "scientifically tested." Too bad if it makes our illness more bearable. It is discrimination in the highest order. You can have a heart transplant and charge the Govt big time, but you cant get coverage for probiotics, vitamins etc. We know why......