Teitelbaum's post on Psychology Today (and my response)

Wayne

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Response to Dr. Teitelbaum

Hi Eric,

Thanks for posting this. I made the following comment (pasted below), but don't know whether it posted or not. (I've not been able to get back onto their comments section.)

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

Dear Dr. Teitelbaum,

Many have been dismayed in the past by your failure to differentiate between "chronic fatigue" and ME/CFS. This article will probably only reinforce this dismay.

I have always appreciated your involvement in ME/CFS, and have benefitted from reading your book and becoming aware of your SHINE protocol. But I do soooo wish you would take to heart how you often fail to emphasize how ME/CFS is NOT just another chronic fatigue state.

Sincerely, Wayne
 
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hvs

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In all seriousness, he is now flirting with lawsuit territory. After 3 mos. or 6 mos. or a year when enough good-faith actors confirm the WPI findings and there are a good collection of publications, any doc blowing this diagnosis and treatment with the result that patients lose their job is going to be liable for malpractice.
 

kamina

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Wow, my respect for Dr.T has dropped considerably over the past few weeks (though to be fair, I was previously indifferent about the guy, at best).

Good responses Wayne and Eric - both well said.
 

zoe.a.m.

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I enjoyed reading all of the responses, there are an awful lot of well-spoken people over here!

What the article brought to mind for me (other than the very questionable treatment of XMRV as "just another virus") is that, since Dr. T has spent so long treating this "very real illness" for so many decades, why has he not made it more clear as to who he is treating? If he has 90% improvement rates, how could he have not published more in this area, and defined his group in terms of one of the many CFS definitions or come up with his own criteria to use consistently?

As Dr. Grobstein said in her testimony (I'm paraphrasing), there needs to be clarity about which criteria are being used so we know if we're testing people with the same illness. I can't believe that Dr. T would be so selfish as to keep a 90% improvement rate so quiet (unless, apparently, you buy his book or an issue of a magazine with his article in it)--it just doesn't make good sense or good science!
 
A

anne

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Mine. Man, that guy is shameless:

It's interesting watching the reactions to the XMRV news--everyone dismissing the findings seems to have something to sell. Portraying XMRV as just another virus is either ignorant or shameless. I've long been concerned that Dr. Teitelbaum cares more about profits than patients--no true CFS doctor would ever plaster the internet with "tired of being tired" ads because of the great harm done by the perception that CFS is mere tiredness. But to dismiss this contagious, cancer-causing retrovirus as incidental in order to promote one's own products is a violation of medical ethics.
 

Christopher

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Wow, my respect for Dr.T has dropped considerably over the past few weeks (though to be fair, I was previously indifferent about the guy, at best).

Good responses Wayne and Eric - both well said.
Yea it's a shame. At least there is this message board to help guide people towards the truth about these people.

I'm very glad I didn't have the money to do the complete treatment at the FFC (visits, IV's, supplements) or else I would have filled their greedy little pockets. It's absolutely sickening the way these businessmen fill the suffering with false hopes in return for a "modest fee" that for some people reaches into the thousands of dollars. Disgraceful.

There really needs to be a way to warn people about these centers before they waste what little money they have.
 

MEKoan

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Mine~

Sir,

You wrote
"But we choose to not be distracted to reduce our focus to only a single infection type..."

This statement, it seems, will be shown to be tantamount to telling an AIDS patient not to be distracted by HIV.

You write as though you are blithely unaware of the difference between a common human herpes virus and the implications of infection with a rare retrovirus.

Trivializing these findings protects no-one's interests but your own.

Shame on you.
 

Finch

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Great comments, everyone. I did go to the FFC and followed the treatment protocol prescribed beginning in November 2006 and lasting for about six months with no improvement. Long story short, I was told I was in the 10% that did not improve but that they'd keep trying.

I came up with a treatment protocol I found elsewhere and was told I was my own best doctor. So I have been. But, of course, I'm not a doctor at all. I still use the FFC but only go once or twice a year so that the doctor there will continue prescribing for me. I don't use their protocol.

The doctor is nice and caring as far as I can tell. She's not the original doctor, and I've only seen her one time so far. We'll see what she has to say at my next visit in a few weeks. It may be interesting - or not.
 

Christopher

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Great comments, everyone. I did go to the FFC and followed the treatment protocol prescribed beginning in November 2006 and lasting for about six months with no improvement. Long story short, I was told I was in the 10% that did not improve but that they'd keep trying.

I came up with a treatment protocol I found elsewhere and was told I was my own best doctor. So I have been. But, of course, I'm not a doctor at all. I still use the FFC but only go once or twice a year so that the doctor there will continue prescribing for me. I don't use their protocol.

The doctor is nice and caring as far as I can tell. She's not the original doctor, and I've only seen her one time so far. We'll see what she has to say at my next visit in a few weeks. It may be interesting - or not.
Since you're in PA, do you go to the Philly one or is there another one in PA?
 

Finch

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Hi Christopher - I'm at the other end of the state - I go to the one in Pittsburgh.
 
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Warning: Harmful to people with ME/CFS

dang - angry again. in out in out

Just posted a looooong comment on Psychology Today with the above caption. It lost all my beautiful formatting.

Psychology Today. What are you thinking? How can you publish an article that is full of errors, opinion presented as fact, and a sales-spiel? Shouldnt this have a caption saying advertisement?

Dr Teitelbaum continually refers to XMRV as a virus, which is incorrect:

a)In a recent newsletter I discussed the XMRV virus​

b) We have been treating viral infections (and many other infections) as one of the cornerstones of resolving CFS for decades. The recently reported research on the XMRV virus, while a useful new finding that will help in our efforts to find effective CFS treatments, is in essence but one more documented infection.​

XMRV is only the 3rd human retrovirus known. It is similar to HIV, which is associated with AIDS and HTLV-1, which is associated with a rare form of blood dsycrasia known as Adult T-cell Leukemia/lymphoma. These are on a quite different level of significance from your run-of-the-mill viruses that Teitelbaum directs the supplements and protocol; he sells at.
_______________________________________________________________

Sweeping generalizations of opinion are presented as fact:

c) the larger picture of what is happening in CFS, with XMRV simply being one of many infections and problems in this illness​

d) Remember that the I in SHINE stands for Infections with multiple treatments that help treat viral infections (such as XMRV) included​

There is NO scientific basis for these opinions. XMRV is a retrovirus that was only discovered this year. The treatments for it are as of yet unknown.
________________________________________________________________

Dr Teitelbaum tries to sell his product throughout, including links

e) there are 5 references to his SHINE protocol and one to his treatment center, with links provided.​
________________________________________________________________

Dr Teitelbaum claims success in treating CFS without substantiating the claim:

f) "Our research shows that 91% of patients treated with the SHINE protocol improve, and many get well."​

g) With effective treatment already available​

h) "But we choose to not be distracted to reduce our focus to only a single infection type, when there are so many that we can effectively treat to help you get well now."​

Only one study from 91 93 is presented as proof of Dr Teitelbaums success in treating CFS.
It has not been presented in a respected scientific journal, nor peer-reviewed, nor the results replicated by other reputable scientists
Only 64 patients were studied, none of whom had post-exertional malaise one of the hallmarks of CFS
46 patients were suspected of having other problems such as hypothyroidism
The wording in the study continually mixes CFS with chronic fatigue (ie daily tiredness or other illnesses)

If he indeed has had any success, one would expect published studies reputable scientific journals, peer-reviews and replication. 16 years have passed since that study where are current scientifically valid studies? If there were effective treatment available, it would not be the exclusive domain of Dr Teitelbaum and 17 million or more world wide would not be suffering with this disease. He may have success with getting rid of tiredness, but has not demonstrated anything to do with CFS.
________________________________________________________________

The one good paragraph in the whole article is

"The XMRV research also offers other benefits, such as attracting media attention, and helps make it even clearer how real and devastating CFS is. This may offer a bit more to silence the nitwits who like to claim CFS is all in your mind (though I would not count on it, as they have ignored reams of earlier research showing CFS/FMS to be very real illnesses). My concern is that this not blind us to the rest of the research in the field, which would cause much harm to those with the illness."​

Hopefully, this additional piece of research on the biological nature of ME/CFS will be the final nail in the coffin of any unfounded views of it being a psychiatric illness.

As to concerns about the discovery of XMRV leading to other research in the field being ignored, it seems unlikely and an unwarranted concern. The WPI team has exhibited the utmost professionalism, starting with working collaboratively with the National Cancer Institute and the Cleveland Clinic, along with support from the University of Nevada. The study was published in Science, the most prestigious scientific journal, with rigorous peer-review. They are eager to find a treatment for ME/CFS and are willing to work collaboratively with all respected scientists in the field.
________________________________________________________________

Its articles like this that cause much harm to people with ME/CFS, not the discovery of XMRV and future research in the field.

ah - fear-mongering, that's the word I was grasping for to describe his last sentence

if:)
 

Nina

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islandfinn: Very well written! One of the very few long articles I had no difficulty reading as it is poignant and spot-on!

Thanks!
 
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islandfinn: Very well written! One of the very few long articles I had no difficulty reading as it is poignant and spot-on!

Thanks!
thanks Nina!

(you should have seen it with all the beautiful formating, indents, bold................ - even more accessible)

if:)
 
C

cold_taste_of_tears

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Talking about coming out the closet, in the article that was posted the other day here about XMRV, there was such a great comment in the accompanying side-bar on the webpage.

All these CFS patients are stigmatized; thats why they stay in the closet. I think were where we were 40 years ago with cancer, Mikovits said. It carried a stigma like CFS does.

Source: http://www.rgj.com/article/20091031...edical-breakthrough-puts-Reno-in-spotlight---
 

dannybex

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Jeez...

Well, I've (partially) defended Tweetlebaum in the past, but this time he really was shameless, and the resulting article, shameful.

Even though it is a blog, and not part of their regular publication, anger and/or disapproval should also be directed at Psychology Today, especially for allowing those direct links to T's website in the piece.

Sheesh.

d.