Report firsthand experience with Paul E. Whitcomb, D.C. to Quackwatch!
I spoke to Dr. Stephen Barrett of Quackwatch.com on 5/1/08. He said it does look like there is something wrong going on with the Whitcomb website. He suggested that if people are not comfortable filing a complaint using these instructions, they can send their firsthand experiences with Paul Whitcomb and The Fibromyalgia Relief Centers to Quackwatch. When there are enough of the right kind of testimonials submitted, he can coordinate legal action. The instructions on how to report a fraud to Quackwatch are here.
If it looks like a duck and it quacks like a duck and it swims like a duck...
There's a nice background piece on Dr. Barrett at medhunters.com. Quoting them:
"The internet," Barrett says, "permits the promoters of unsubstantiated ideas to reach a very wide audience inexpensively. However, it also enables people like me to put up information." This range of easily available information is making it possible for health care consumers to do exactly what Barrett is doing: read the evidence and make an informed assessment.
And
Despite Barrett's pattern of naming names of people as well as products, he has never been sued for libel, except for a counter-suit to a libel suit he once filed (the counter-suit was dismissed). His explanation? "I protect myself by not saying anything that isn't true."
I can only aspire to follow in his (huge) footsteps.
Um, what does Whitcomb actually do/claim? His website looks very suspicious and he even misinteprets OCD as "obsessive compulsive disease", but all the pages I try to access only say they're members only.
ReplyDeleteHey Sherril, I've been reading your posts on Whitcomb with great interest. There's a clinic that's advertising heavily here and I wondered if you knew anything about it. I don't think it's related to Whitcomb -- at least I haven't seen his name on the site yet but I haven't fully explored it. It's called the Fibromyalgia & Fatigue Center, [url]http://www.fibroandfatigue.com[/url].
ReplyDeleteI've only briefly scanned the website, but it talks about their "unique treatment approach" with "proven successful outcomes." And of course, they don't take insurance. :) I'd be interested if you know anything about them. I'm very skeptical, since if their techniques were proven, wouldn't everyone be doing it and FM be considered highly treatable?
Let me know what you think!
--Aviva
Fibromyalgia and fatigue centers are owned by Jacob Teitelbaum. He is not a quack as such and he does use some effective treatments, but he is obviously very focused on a) media attention (for himself, not the illnesses) and b) selling books (and making money in general). One could also question his knowledge about CFS/ME, since he frequently refers to it as "fatigue", which is very inaccurate. I would never go to a place that claims to have specialists for CFS/ME but is named "fatigue center." He does not understand the real severity of this illness. I've even heard some people claim that some doctors of these centers blame the patient for not getting better.
ReplyDeleteHe has performed some studies, but there is nothing special about the treatments he uses, such as hydrocortisone and some other hormones. They are in fact used by many other CFS/ME doctors, but the others aren't as hungry for fame as Teitelbaum, so you might get the impression that he has pioneered these treatments (though he admits he has adapted a whole bunch of treatments from Jay Goldstein, who IMO is the CFS/ME/FM guru). One good thing about him is that he has populized the supplement D-ribose, which seems to be very helpful for energy levels in many people (unfortunately it is very expensive - but that has nothing to do with him).
My biggest beef with him, as a CFS/ME treatment expert, is that he tries to get people to take over 20 supplements at the same time - and medications on top of that. He even recommends starting over a dozen of them at the same time! His approach seems to be one symptom = one pill (or several), and a handful just for good measure. Some of the "alternative" treatments he recommends are known to be quackery. I have no doubt he can make some people better, but not as many as he claims to, and even those who are better are most likely taking loads of unnecessary and expensive pills.
My own approach (detailed in my book Reviving the Broken Marionette: Treatments for CFS/ME and fibromyalgia is that a) one should aim to use medications which help more than just one symptom, and preferably affect the underlying disease process as well and b) you should never keep taking a medication or supplement, if you can't be sure it's working for you (with some exceptions, like multivitamins). Most CFS/ME doctors seem to agree with me and it's probably why they don't sign praises for Teitelbaum.
I'm a patient of Dr. Teitelbaum's, and I agree with you on some points, but I do have a few corrections:
Delete(1) He doesn't own the Fibro and Fatigue Centers. He was the medical director for the company (he trained their doctors), but he has since separated himself from them.
(2) He doesn't recommend starting many treatments at once. In fact, he and his staff instructed me to start one thing at a time, with several days in between starting the next thing, so I can tell if I'm reacting negatively to something, etc.
(3) Any money that he receives as a result of recommending a manufacturer's products is donated to charity. He even gave me a discounted price for my appointment because of my financial situation. I'm found him to be very caring, and I feel that anyone who meets him in person (whether as his patient or at a conference, etc.) would agree with me that he deeply cares about helping those afflicted with CFS and FM.
(4) He does recommend several things universally, including his Energy Revitalization System, but based on my own experience and the experiences of other patients and customers that I have talked to, the things he recommends are very successful. So it's not a one-supplement-fits-all treatment, but he generally recommends several things to start off your treatment, and then the rest of your treatment would be customized based on your specific issues and medical history.
(5) The sense that I get is that in order for him to spread his findings and approach as far as possible, he has to water it down to fit a wider audience (such as on the Dr. Oz show, where he mainly addressed "fatigue"!).
As for the many supplements he offers, anyone following his treatment protocol would only use those that help them. Some things works miraculously for me, and a few others were a bust, but it's a trial-and-error process, which he informed me up front. These illnesses are so complex, and I'm so grateful that I have him to guide me through the process.
I do hate to pay so much for so many supplements, but actually whenever I try to reduce my doses or stop taking one or two supplements to save money, some of my symptoms come back, so it might seem like a lot, but it's helped me get my life back. I'm only 26, too young to give in to something as debilitating as CFS, and he has truly changed my life.
I know this post is 5 years old but if you see this I hope you will reply. I am desperate to talk to anyone in the same situation as I am and also a patient of Dr. Teitelbaum. Thank you.
Deletem. -
ReplyDeleteWhitcomb does a cervical adjustment that he says fixes what causes FM. Only he knows what exactly is the cause or the fix, and he ain't tellin'. His whole operation is getting more and more secretive; when I first looked at his site years ago he actually said he had The Cure. He is probably avoiding actually coming out and telling what it is he does, to avoid claims of fraud and deceptive advertising. He knows that the more people he messes with, the greater the chances they will get together and bring him down. I've got lots more on him and I'm not finished writing about him. Not by a long shot.
RE: Teitelbaum & the F&F Centers, I disagree with your assessment. I don't think he's overly concerned with media and sales. I do think he is helping a lot of people. I hope to be able to go to the F&F Center in Atlanta soon. I'll have more to report after that.
For now, Dr. T's website is http://vitality101.com. Lots of excellent and free info there. His books are From Fatigued to Fantastic, and Pain Free 1-2-3. Very reasonably priced, full of excellent info and also available in many libraries.
The DVD "Effective Treatment for Fatigue, Pain, CFS & Fibromyalgia" is excellent. It is offered free to support groups through the also free newsletter available at http://www.endfatigue.com/web-newsletters/Newsletter.html. The DVD is also available for purchase at https://secure.endfatigue.com/store/products/publications/dvd-jacob-teitelbaum. It's two hours long and chock full of easy to understand and current information. Dr. T also tells in the DVD that he is no longer seeing patients. He is spending his time training other doctors to treat FM and CFS/ME. I live in a rural pocket on the east coast and from where I sit, we DESPERATELY need more doctors who know the best current treatment approaches. In my area everyone is always scrambling to find a doc who knows what they're doing. Some travel several hours to get to one.
Teitelbaum (and I assume the F&F Centers) treatment philosophy is expressed succinctly in The SHINE Approach and Treatment Protocol. SHINE is an acronym for Sleep, Hormones, Infections, Nutritional Supplements, and Exercise. See http://www.endfatigue.com/treatment_options/Shine_treatment_protocol.html for details.
Teitelbaum has been treating FM & CFS/ME for @ 30 years, since long before the F&F Centers even existed. He was only recently appointed Executive Director and I'm sure he has nothing to do with the name. He uses lots of different research studies and refers to them in his newsletter, books and DVD. He encourages people to use a powdered supplement to avoid having to take so many pills. The other pills he recommends depend on the person, as it should. I have found his online program to be very useful: it's a "program that will analyze your symptoms and lab results (if available) and design a SHINE treatment protocol for your individual case. The process is simple. You simply register and fill out an online questionnaire. The program will then analyze your symptoms and history using the same assessment criteria that Dr. Teitelbaum uses with each of his patients. The result is a list of the suspected underlying causes of your CFS/FM and a detailed treatment plan, tailored to your specific symptoms. You can begin the natural remedies (dietary supplements) on your own ... You can work with your practitioner to use your protocol as a custom guideline for utilizing the prescription remedies that will help you to start to get well now!"
The "Short Program" is also FREE!
I don't know much about Jay Goldstein but will check him out. If you have any links to post to help point me in the right direction, that would be great.
Your book looks very interesting. I hope to be able to check it out one day soon also. Finances, as usual, have to be considered carefully before making any purchase.
Thank you for commenting!
Oops - forgot to put link in to Dr. T's online program: http://www.endfatigue.com/treatment_options/Online_program.html
ReplyDeleteI haven't seen the DVD, but I have read Teitelbaum's books. And I don't like his approach, even though it has some sane ideas. He does want people to take an awful lot of supplements. His idea seems to be that it's better to take supplements that help, say, 50% of people to get 5% improvement, while Jay Goldstein is more into things that may help just 5% of patients, but can produce 50-100% improvement. The idea is to try out meds (generally ones that work in seconds, minutes or at least hours) until you reach that 90-100% level.
ReplyDeleteOf course it is not that black or white, I am just oversimplifying, but after reading two books from both of them, I have much, much more faith in Goldstein. He is a genius when it comes to neuropharmacology. Even Betrayal by the Brain, a book he wrote over 10 years ago, is still ahead of the time. Loads of things he wrote in that book have since been proven true - and I don't think anything has been proven false. Goldstein backs up everything with science, which can't be said about Teitelbaum. He is a doctor who should get a Nobel prize, but it might take decades until the medical community really understands his brilliance. He is also all about the patients. Teitelbaum is all about hype. If you are a CFS/ME expert, you simply don't title a book "From Fatigued to Fantastic". It's just a sales spin to turn serious neurological illnesses into "fatigue." It is an insult to the people who are gravely ill with CFS/ME and risk dying without proper treatment.
Of course, doctors like Teitelbaum are much better than doctors who don't know anything about CFS/ME or who are extremely conservative with treatments. We don't have anything like him in this whole country (on the other hand, my doctor gets great results without being a CFS/ME expert, simply because he is open to new treatments and because he follows an approach similar to Goldstein, which treats all symptoms as neurological dysfunction).
What Teitelbaum doesn't get is one of Goldstein's most important ideas: the treatment needs to be tailored not only to your symptoms but to your responses to e.g. other medications. How you've responded to different treatments in the past (whether positively, negatively or no response at all) is the best guide to trying out new ones. It's not far from an algorithm, not a foolproof one, but a very useful one nonetheless.
I went to Teitelbaum, and he helped me, but I think really only by prescribing hydrocortisone and ambien for sleep. And with a few years of time passing. All the other supplements and meds he put me on were, for me, I think worthless. I am not cured, but with the hydrocortisone cushion function at a much higher level than I used to. Only thing is I may be paying a price for this coriticosteroid habit. It cetainly is hard to get off of the steroids! Still, if you are experiencing CFS and don't seem to be making progress the Teitelbaum approach may be worth trying. There may be a few nuggets of gold scattered amongst the dross. I think at heart he is a good man, though yes, very self-promoting. And I think his egotism can make him sloppy. If you do try the Teitelbaum approach, definitely do sowith the guidance of a good local physician who will monitor your progress.
ReplyDeleteI'm supposed to be starting hydrocortisone too. Hope it helps me function at a much higher level, and I'll be sure to check into the side effects. They've got me starting so much new stuff at the Fibro and Fatigue Center that I'm behind on researching it all. Thanks for the comment.
ReplyDeleteTeitalbaum is a brilliant man who has helped hundereds of thousands of people though his protocol shine...it addresses all areas that need to be correct in order for people with CFS to heal
ReplyDeleteI went to the Denver Center for Fatigue. They meant well ~ however I am in Montana so the drugs they had me on resulted in 2 hospital visits. After a few thousand dollars with them I found Dr. Ferril in Whitefish,MT a holistic phsician who helped me get a lot of my life back. Without him I would be dead by now. Hence the whole experiment with CFS Center was money spent and symptoms increased. I know some are helped but I was desperate and they gave one 80% chance of getting better. Not the case for me as it made me worse. They start one out on anti depressants which make me suicidal and then it jsut continued to be a nightmare for me. Dr Ferril made a difference in days.Cortef is probably why.
ReplyDeleteAnonymous - glad you found your way to effective treatment!
ReplyDeleteTeitlebaum's only journal article was in the "J of Chronic Fatigue Syndrome" which was discontinued after the first year.
ReplyDeleteI've also read recently on Consumer Health Digest that:
Delete"Jacob Teitelbaum gets FDA warning letter.
"The FDA has ordered Jacob Teitelbaum, M.D., doing business as From Fatigued to Fantastic, LLC, to stop making illegal therapeutic claims for Corvalen (D-Ribose), Coenzyme Q10, Jigsaw Magnesium w/ SRT, "BMR Complex (Thyroid Glandular), Energy Revitalization System, Acetyl-L-Carnitine, Chol-less, Thymic Protein, Alpha Lipoic acid, Black Cohosh, and Eskimo 3 Fish Oil. http://www.casewatch.org/fdawarning/prod/2012/teitelbaum.shtml Teitelbaum is medical director of Chronicity (formerly named Fibromyalgia and Fatigue Centers) which operates 13 clinics in the United States. Last year the FDA warned Chronicity to stop making illegal claims for Chol-less and several other products."
http://www.casewatch.org/fdawarning/prod/2011/chronicity.shtml
FYI Bill, I just read an interview with Dr. T by Bottom Line publication (BL Personal, 5.15.12) and they list 2 published articles: the you mentioned and The Journal of Alternative and Complementary Medicine. I can't speak to the validity of either of these journals but there you have it.
DeleteI just read this letter and it sounds like Dr. T may not have received sufficient counsel before advertising these products. On the other hand, I don't see how this is much different (I'm not an attorney) than Dr. St. Amand's protocol of guaifenesin (though he has his patients get their guai from either the pharmacy on 'campus' or other sources but 'highly suggests' the pharmacy on their campus). Many people have been helped by that protocol and many have not. I was on it for a year and when I complained that it wasn't helping at all I was often told that I must have been doing something wrong (not by him. I found him sweet though definitely wedded to his protocol which I expect from most researchers; that's the point!). So like with everything, looking for a cure isn't reasonable. Looking for something that will help may be more reasonable an outcome. Trying various protocols is sadly the only option we have right now - and I do appreciate the cost of all that, in time, energy, and money. What we need is more research on FMS/ME and more MD's willing and interested in these conditions!! Thanks!
ReplyDeleteExcellent synopsis, Dee-Dee. Thank you
ReplyDeleteIt appears that I was wrong about Dr. T. and the Fibro and Fatigue Centers. This is from Dr. Stephen Barrett's May 3, 2012 Consumer Health Digest #12-16:
"Jacob Teitelbaum gets FDA warning letter.
"The FDA has ordered Jacob Teitelbaum, M.D., doing business as From Fatigued to Fantastic, LLC, to stop making illegal therapeutic claims for Corvalen (D-Ribose), Coenzyme Q10, Jigsaw Magnesium w/ SRT, "BMR Complex (Thyroid Glandular), Energy Revitalization System, Acetyl-L-Carnitine, Chol-less, Thymic Protein, Alpha Lipoic acid, Black Cohosh, and Eskimo 3 Fish Oil. http://www.casewatch.org/fdawarning/prod/2012/teitelbaum.shtml Teitelbaum is medical director of Chronicity (formerly named Fibromyalgia and Fatigue Centers) which operates 13 clinics in the United States. Last year the FDA warned Chronicity to stop making illegal claims for Chol-less and several other products. http://www.casewatch.org/fdawarning/prod/2011/chronicity.shtml"
Live and learn.
The FDA’s concerns were not over any accuracy of the information or supplements—simply that for any nutrient that Dr. Teitelbaum tied to treating a health condition, they wanted him to pay the $500 million needed to put it through their "approval process."
DeleteI stopped putting stock in the FDA a long time ago.
I wanted to thank you Sherril as well as the others who contributed to this Blog. I have been very sick for over 3 years was originally diagnosed with a immune disorder and on Plaqunil for most of that time. I recently found an excellent Primary care Doctor and many tests later have been re-diagnosed with CFS I am considering Dr Teitelbaum's treatment SHIN with a Dr in my area who received this training. I do respond well with supplements and holistic aids so that intrigued me however I was concerned about the validity of this DR and his book. I appreciate greatly the input I found here. I can tell the responses were from people who are just as concerned as I am about getting well with out being duped. I believe I will still move forward on this and can check back in and let you know how this goes for me. I am so tired of being tired and want my life back... I am sure you all understand that. I don't however believe the FDA warning is a reason for me to be put off they seem to have their own agenda sometimes and must work within certain constraints. I do not and my only agenda is my own well being. That being said, I will most definitely be back to check in on your site thank you all for reminding me I'm not alone out here.
ReplyDeleteUnless any of you have "walked in our shoes" and suffer from CFS/Fibro as I have for 15 years, don't pass judgment on doctors trying to help. I started out with a pioneer in the field 15 years ago, Dr. Poesnecker (God rest his lovely soul) from Clymer Healing. He cured me with basically the same things Dr. Teitelbaum uses. These treatments are tried and true. I went from bedridden to successful. Yes, its a lot of supplements, but you have to take them to function, and its a small price to pay to LIVE your LIFE. So those of you who are quick to judge his motives, try dealing with this devastating illness one week. I still struggle and have to revert back to these treatments and thank GOD I have them. The products are natural, and you are not walloped up on pain meds, sleep meds, and antidepressants like Dr's like to do. Thank you.
ReplyDeletedear "anonymous" -- i really appreciate your response here - my son has CFS and has gone downhill for 6 years. Just curious about whether your experience with Dr T has been since you wrote this 2 years ago. Thanks
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