ALERT: Teitelbaum to be on DR OZ SHOW this FRIDAY!

[gracie]

don't underestimate dr oz damage

I agree w/Karena, we should not underestimate the damage someone like dr Oz can do. WE know about the xmrv virus and it's link to cfs, but most people have not heard of it yet, while anything Dr Oz talks about it on his show becomes widespread, immediately.

 

[Dreambirdie]

My letter to Dr Oz

October 24, 2009
Regarding Chronic Fatigue Syndrome

Dear Dr. Oz:

I am writing to you in regard to a segment I saw on your show yesterday, October 23rd, which pertained to exhaustion and chronic fatigue syndrome. During the course of this segment, CFS was clumped together with the general theme of EXHAUSTION, during which it was described as a "new" disease, reduced mainly to a symptom, and concluded by your guest expert (Dr. Teitelbaum) to be "very treatable" by supplements, and by dietary and lifestyle changes.

These simple conclusions are COMPLETELY INACCURATE, highly misrepresentative of CFS and stand to be in serious need of correction.

1) CFS is NOT JUST exhaustion.
2) CFS is an extremely debilitating multi-systemic chronic disease.
3) CFS affects between 1 to 4 million Americans, and 17 million people worldwide.
4) FULL RECOVERY FROM CFS IS RARE. It is estimated that only 5% of those with CFS achieve full recovery. Recovery is much more likely for those who have had CFS for five years or less, decreasing greatly after that.
5) There are presently NO KNOWN CURES for CFS.

Very recent research findings by the Whittemore Peterson Institute at the University of Nevada in Reno have revealed a retrovirus (the XMRV virus) present in 68 of 101 blood samples of CFS patients that were tested, and antibodies for the virus in 95% of these samples. These remarkable findings have given hope to the many millions who have suffered with CFS for so many decades, I being an unfortunate one.

I request that you please take the time to thoroughly investigate CFS, as well as the new research findings, for yourself. I am sendng you a list of internet links to aid in that process. I also request that you do a follow up show to address all the very important points that you missed and misrepresented the first time around.

The truth about this devastating illness needs to be told. Knowledge is power and ignorance just leaves us all in the dark.


With best regards, xxxxx

 

[Dreambirdie]

Here's the links I sent Dr. Oz

VIDEO of Dr. Donnica Moore on Good Morning America
http://www.youtube.com/watch?v=JFBY8UKMVp0


VIDEO of Dr. Nancy Klimas
http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv


The NY Times Q& A with Dr. Nancy Klimas
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/


From BioEd Online
http://www.bioedonline.org/news/news.cfm?art=5704


Assorted Science Magazine articles
http://www.sciencemag.org/cgi/content/abstract/1179052v1
http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus#comments
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
http://www.nature.com/news/2009/091008/full/news.2009.983.html
http://www.sciencenews.org/view/gen..._might_be_culprit_in_chronic_fatigue_syndrome


Assorted Media articles
http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=2
http://www.npr.org/templates/story/story.php?storyId=113613955
http://online.wsj.com/article/SB125501227713473525.html
http://www.latimes.com/news/nationworld/nation/la-sci-fatigue9-2009oct09,0,3368993.story

 

[MEKoan]

I agree w/Karena, we should not underestimate the damage someone like dr Oz can do. WE know about the xmrv virus and it's link to cfs, but most people have not heard of it yet, while anything Dr Oz talks about it on his show becomes widespread, immediately.

Hi Gracie,

I think it might be useful to remember that waaaay more doctors read the Wall Street Journal and the NYT than watch Dr. Oz.

Hope that lifts your spirits!

Koan

 

[MEKoan]

Great letter, Dream.

peace,
Koan

 

[Dreambirdie]

Great letter, Dream.

peace,
Koan

Thanks, Koan. I will now be taking a very necessary 24 hour vacation from this issue.

See you tomorrow. Hugs and kisses to all comrades in arms.

 

[leelaplay]

Hi IslandFinn,

Great letter...I admire your passion and am so sorry the show made you so understandably upset, but I'm glad you slept on it as well.


I think Koan has an excellent point. Perhaps it's time to just step back from the Great and Wonderful Oz (who IS that man behind the curtain?) for a bit, and spend your time taking care of YOURSELF. ]

hi dan - aha - another wicked sense of humour. luv it. i do get riled up sometimes but no worries- am also taking care of myself. the draft was as far as I got yesterday - realize it's a bit harsh, but it's a start

Even worse, you could tell him from now on you're switching to Dr. Phil!
.

ah - now when logic fails - threats might work. never really got into dr phil. only thing i like is "so how's that working for you"

p.s. I'm curious...where did you get your 17,000,000 figure? It was my understanding that the US estimate is 0.5-1% of the population...closer to 1,700,000

sorry - that's the number the wall st journal ("An estimated 17 million people world-wide suffer from chronic-fatigue" syndromehttp://online.wsj.com/article/SB125501227713473525.html) and a few other sources (I can't remember right now - also think but can't confirm that I saw that number extrapolated in a study) used for a likely # of people affected world-wide.


Well, whether I rework the letter or not -felt good to try to get my reactions and those of the people in my life down in words and to feel like I'm doing something. Thanks for your comments and questions dan

oh - dreambirdie -your letter just came up while I was writing this reply - much better - much less reactive and inflammatory! thank you for being so effective and clear! rest well
if

 

[SDD1244]

I watched the show and I was furious. I am sending Dr. Oz an e-mail and that includes a copy to $ Dr. Teitelbaum $.

 

[IntuneJune]

Dr. Oz

I did not see the show....

Through your descriptions, I experienced frustration beyond disappointment as the show resulted in an opportunity not lost but destroyed.

AND.

What if.......what if the CSF/ME community had viewed THAT show BEFORE the XMRV news release???????????

Right now, we feel there is hope on the horizon and we are all holding on to that hope.

That hope held me up while I was reading your posts.

What if....... what if that hope, the crutch, had not been there. What if we had nothing to hold onto, how would the ME/CSF community fared with Dr. Oz's program.

You are all amazing folks, I felt enriched reading your posts and value your works in progress. I appreciate all the emotions in this thread.

Thank you. Fondly, June

 

[Ruth]

Hi all concerned about Dr. Oz's misinformed show:

It looks like he is a real doctor and a real medical researcher and with his background in cardiology should find interesting the cardiac symptoms (heart enzymes found in studies of Lerner and Cheney and others as I recall but would need to check this) and ionopathies and possible relationship with a virus with cortisol receptors. I think I also read that having a CFS diagnosis make one 25 times more likely to have a heart attack.

There is nothing wrong with sending him "I am so disappointed ..." letters, but maybe we should also try to craft one that appeals to his research background and [hopefully still current] research interests and see if we can get him (and maybe Oprah too) onboard. Hey, maybe we can even get Dr. Phil AND his wife--we can tell them what is and what is not working for us.

I can try to assemble the cardiology stuff for a letter to Dr. Oz, but not today. Well maybe later today. Do any of you remember stuff that should be included?

Here is part of his bio from the show's website:

Dr. Oz, host of The Dr. Oz Show, is Vice-Chair and Professor of Surgery at Columbia University. He directs the Cardiovascular Institute and Complementary Medicine Program at New York Presbyterian Hospital. His research interests include heart replacement surgery, minimally invasive cardiac surgery, complementary medicine and health care policy. He has authored over 400 original publications, book chapters, and medical books and has received several patents. He performs 250 heart operations annually.

On another note, on one of the threads folks were talking about looking for a celebrity to champion our cause and appear at CFSAC to get media attention--so we are not just singing to choir on one hand or to deaf ears on the other (e.g. Dr. R). Maybe we can make the great Oz feel a bit guilty about misrepresenting our condition and can get him to make it up to us by helping support our cause. I see he lives in Cliffside Park, NJ with wife and family, maybe we could convince him to make a cameo appearance at the CFSAC meeting next week. Just long enough for some (prenotified) media attention. Too bad there is not more time to try to effect this. [The following paragraph in his bio is what made me think of my proposition in this paragraph.]

In addition to belonging to every major professional society for heart surgeons, Dr. Oz has been honored as one of Time magazines 100 Most Influential People (08), Esquire magazines 75 Most Influential People of the 21st Century, a Global Leader of Tomorrow by the World Economic Forum (99-04), and The Harvard 100 Most Influential Alumni in the 02138 magazine, as well as receiving the Ellis Island Medal of Honor (08). He won the prestigious Gross Surgical Research Scholarship, and has received an honorary doctorate from Istanbul University, He was voted "The Best and Brightest" by Esquire Magazine, a Doctor of the Year by Hippocrates magazine and Healer of the Millennium by Healthy Living magazine. Dr. Oz is annually elected as a highest quality physician by the Castle Connolly Guide as well as other major ranking groups.

Also, maybe we need to think/stink BIGGER and think of contacting people on several popular TV shows. Maybe we will be invited to bring our perspective to shows like the Oprah show, to name one. Has anyone written to her? If we do and get no response or a negative response, especially in light of the recent news from WPI, we may wonder if there is some sort of censorship going on. Hopefully that is not what we will find.

 

[zoe.a.m.]

Dr. Teitelbaum posted on another board

I hope I am not breaking/bending rules by mentioning another board specifically (so, if I am, apologies!) but Dr. T posted a response in a thread about his appearance on the show on the Prohealth CFIDS/ME board. It did not mention anything specific to his appearance, but clearly he had read the 50+ responses.
Just mentioning this in case anyone wants to check it out--I was surprised to find it!

Hi Ruth, I posted something (elsewhere) about how I wondered why, given that Dr. Oz regularly does workups of the average person (with X condition) on his program, that he had not just stuck to the medical findings in CFS patients (including, as you mention, the cardiac factors). This seems like it would have been a much smarter approach and would have been more in keeping with his previous shows and more informative to patients and the general viewing public.

I enjoyed your letter islandfinn, even if you don't feel it's appropriate to send at the moment--certainly appreciate your thoughts and effort!

 

[klutzo]

Oprah and Dr. Phil - two thumbs down

Hi Ruth,
I am from Madison too, and I miss it so much. The biggest mistake I ever made was letting the doctors covince me I had to move to Florida. I was able to work six years longer because I moved, but now am stuck here, where I feel completely out of place.

I don't know about CFS, but several years ago, we FMS sufferers had a national effort and sent 40,000 letters to Oprah to get her to do a show on Fibromyalgia. She did not respond, and we later learned that was because Dr. Phil told her that FMS is a psychiatric illness.

Since CFS is usually lumped in with FMS, and many feel they are the same, I would not expect a warm reception from either of them. I got the distinct impression, from watching things unfold, that the only reason Dr. Oz was not polluted by Dr. Phil's viewpoint was because Dr. T contacted him and got to him first.

I am not saying don't try; it's always worth another try if you've got the energy, just don't get your hopes up too high. We've had our hopes dashed so often.

klutzo

 

[suejackson]

Dr. Oz Show

A friend told me about the great discussion over here on Dr. T's appearance on the Dr. Oz Show - she was right!

I wrote about the show on my blog (www.livewithcfs.blogspot.com) Friday, and Dr. Teitelbaum himself left a comment, in an attempt to clarify his own approach to CFS. of course, this doesn't change the fact that the show itself did not differentiate between CFS and chronic fatigue.

You can read my post and Dr. T's reply at:
http://livewithcfs.blogspot.com/2009/10/very-inaccurate-coverage-of-cfs-on-dr.html

 

[Wayne]

You can read my post and Dr. T's reply at:
http://livewithcfs.blogspot.com/2009/10/very-inaccurate-coverage-of-cfs-on-dr.html

Hi All,

Sue, thanks much for posting this, and welcome to this forum . Dr. Teitelbaum's reply sort of reinforces my perspective about him that I posted back in August: """""My take of Dr. Teitelbaum's 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."""""

I think Dr. Teitelbaum probably experienced something that might be more akin to "post-viral syndrome". Like Dr. Judy Mikovitz, I feel that the XMRV virus will eventually be found to be the factor that differentiates chronic fatigue and/or exhaustion from "core ME/CFS"

Best Regards, Wayne

 

[Wayne]

Dr. Teitelbaum's Reply to Dr. Oz Show

Dr. T posted a response in a thread about his appearance on the show on the Prohealth CFIDS/ME board.

Hi Zoe,

Thanks much for posting this. Dr. T's reply is on this thread. He posted with the username "endfatigue". I'll paste his reply below for convenience.

Just wanted to mention that I do not believe it's against the rules to post about another forum. I make reference a lot to posts on threads over at PH. Just a lot of good information there that would be a shame to not access.

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

Dr. Teitelbaum's Reply ...

I understand peoples frustration in having this disease. Having personally treated over 3000 people myself with it though, and published several studies on treatment (including a randomized, placebo controlled study published in a peer reviewed journal), I can say that effective treatment is available.

That does not say it is a cure (though in a significant number, the illness is no longer an issue). I also actively explore new research looking to improve treatment. What is available NOW with the SHINE protocol though, is an average 75% increase in quality of life at 3 months and 90% at 2 years. This does take an integrated protocol addressing many issues, tailored to each individual .

I invite and encourage your questions and its good to voice your concerns. Simply know that I am on your side and working as hard as I can to help (and have been working in the field for over 30 years)

Love and Blessings

Dr T
Jacob Teitelbaum MD

Senior author of the landmark studies Effective Treatment of Chronic Fatigue Syndrome and Fibromyalgia -- a Placebo-controlled Study and Effective Treatment of CFS & Fibromyalgia with D-Ribose. Author of the best-selling book From Fatigued to Fantastic! (3rd revised edition, Avery/Penguin Group) and Pain Free 1-2-3A Proven Program for Eliminating Chronic Pain Now (McGraw- Hill). Web site: www.Vitality101.com

PS- I understand having healthy skepticism when treatments are recommended, so I have this simple policy. I do not take any money from the pharmaceutical or natural products industryand the royalties from my products go to charity. When doctors are recommending my products (which I made to simplify care), or you get them in a health food store, or on the ProHealth web site, this means I make nothing for your using them. I also have no ownership in the Fibromyalgia and Fatigue Centers (which, by the way, charge less than it costs to actually give the care). I do happily train their physicians --and doctors worldwide. This week I lectured on treating CFS & Fibro to ~ 2000 physicians in 4 cities in Indonesia.

 

[Hysterical Woman]

Dr. Teitelbaum on Dr. Oz

A friend told me about the great discussion over here on Dr. T's appearance on the Dr. Oz Show - she was right!

I wrote about the show on my blog (www.livewithcfs.blogspot.com) Friday, and Dr. Teitelbaum himself left a comment, in an attempt to clarify his own approach to CFS. of course, this doesn't change the fact that the show itself did not differentiate between CFS and chronic fatigue.

You can read my post and Dr. T's reply at:
http://livewithcfs.blogspot.com/2009/10/very-inaccurate-coverage-of-cfs-on-dr.html

Hi Sue,

Thanks for joining the discussion here. And thanks for having a blog where Dr. T. could respond to what had been said, and your professional response back to him.

I still find it hard to believe that he can lump the new XMRV findings in with other viruses linked to CFIDS in the past. He seems to be ignoring that less than 4% of the general public test positive for the XMRV - and those could even be false positives? Altho we can't be sure that XMRV will turn out to be the "cause" of CFIDS, it might be that treating the retrovirus could improve our symptoms to the point where we could recover more normal lives. In am also concerned that he thinks he is covering the bases by currently treating some patients with antivirals. Would those antivirals also be antiretrovirals? Seems like a lot of unanswered questions.

Thanks,

Maxine

 

[Frickly]

Hi Sue,

Thanks for posting a link to your blog. Your response to Dr. T was right on the money. I disagree with Dr. T that this 5 min spot on Dr. OZ was not enough time to get out important info on CFS. Just look at what they did on GMA.

Sorry Dr. T but you are blurring the lines between Chronic Fatigue syndrome and Fatigue. I have followed some of Dr. T's recommendations, in fact, this is how I got started on many of my supplements. I think supplements are very important and my son and I take many and have possibly kept me from getting sicker than I am now. However, these have not cured me or even got me to a point that is acceptable. I also took D Ribose for many months. It helped me to stand long enough to make dinner for my kids but this was about it.

Wayne, I hope your prediction comes true. Dr. T's prediction that it will take 5 to 10 years for this XMRV thing to pan out really ticked me off. I think he is dead wrong and agree that this research is huge and will lead to new treatments for us and soon.

 

[MEKoan]

Hello Sue, thank you for facilitating that very useful dialogue with Dr. T. And, thank you for your intelligent and considered responses to the current developments.

I am very grateful for the civil and respectful nature of the discussion.

Your blog is a great contribution to the ongoing dialogue.

many thanks!



I posted the following - my concerns regarding SHINE - in response to Dr. T. on the other forum under discussion in this thread.

Dr Teitelbaum

Thank you, very much, for taking part in this discussion.

I have had an opportunity to look at your study. I was unable to determine how long those who experienced improvement had been ill but that may be a function of my cognitive issues and not a flaw in your study - don't know.

Many people with ME/CFIDS improve considerably in the first 5 or 6 years, many experience a permanent improvement. I improved to 85% and maintained that improvement for more than a decade of very active and productive life. I relapsed ten years ago.

Your study is interesting but very small. Perhaps you have done a number of follow-up studies since its publication.

In the years that I have had contact with other people with ME/CFIDS - here, on other forums, and in life - I have only encountered people who were unable to achieve the results 23 of your participants reported at follow-up: "much better". Given the waxing and waning nature of this illness, I think "much better" is the only significant observation; "better" could be accounted for by the natural course of the illness.

Again, I'm sure you have undertaken larger studies following this one and I would be very interested, as I'm sure many here would, in being able to see the results.

Much of my concern, and perhaps that of others, is that if you are teaching SHINE to 2000 doctors in a week, based on the results found in 23 patients who had "FMS and/or CFS", they may generalize your findings to patients who have a condition other than that which afflicted those 23 patients. If they adhere to your protocol and positive attitude that it will be efficacious, the patients who are treatment failures are left in a rather difficult position. As I'm sure you know, the patient is too often blamed for that failure.

I admit that I may have hold of the wrong end of the proverbial stick here and I am grateful for a chance to ask for your opinion on this matter. I would also like to take this opportunity to say that I appreciate your continued interest in this confounding illness and trust that your motives are of the highest order.

Thank you for taking the time to read my post.

Peace,
Rafiki

 

[Cort]

What a great thread! I just want to point out that it is the policy of these forums that you can link up to any source of legitimate information regarding this disease - in fact we encourage it.

 

[Dreambirdie]

Thanks Ross. I am hoping you'll write a letter too.

Everybody has their own experience and their own way of expressing their discontent. Dr Oz will eventually hear all the different versions of it.