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Too true.

Two truths:

1. Doctors don't always know things (but they won't admit it.)

2. The media usually gets some things wrong, and almost never gets

everything right.

This group, collectively, is smarter than either.

--

Ken West

Check the library . . .

samters/links

> From: " tex22_us " <tex22_us@...>

> Subject: houston chronicle

>

> they had a story today in the houston chronicle.i guess its from the

> health editor. he was writing about samters triad and saying that a

> doctor told him he had a 25 year old female who had it since she was

> ten and she has had 5 polyp surgerys in ten years. he talked about the

> three things, asthma,polyps and aspirin senstivity and said that there

> was no cure and all you could do was try to make the patient live as

> normal a life as possible. he said that she was on ten medications. he

> talked about how aspirin should never be taken by someone with

> samters. he never mentioned aspirin desensitation or irrigation as

> treatments for it. too bad there's no way to let her know about this

> site. just think of all the samterites out there being overmedicated

> and living not as well as they could be. i'm just glad i found this

> place.

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Guest guest

Done. My letter below.

I just get more and more angry at story after story of doctors not knowing

what they are talking about, and pretending otherwise.

Thanks, Lori.

--

Ken West

> From: " truelori " <lori@...>

> Subject: Re: houston chronicle

>

> Here is a link to the article.

> http://www.chron.com/disp/story.mpl/health/3758123.html

> I am going to write to the editor and tell them about our group and

> that there are other treatments available. Maybe others want to do

> the same.

Houston needs to get with it.

Nasal irrigation can hold polyps at bay.

Aspirin desensitization eliminates the risk of an ASA-induced attack.

It is ridiculous that Atkinson is taking 10 medications per day and that

Fakhri has nothing better to offer.

(On the other hand, it is not unusual that physicians have no real clue when

it comes to Samters -- the problem is, they don't know, and don't admit,

what they don't know.)

Any article about Samters which does not reference desensitization and/or

irrigation is10 years out of date.

If you are really interested in polyps and Samters, get a membership

and go to:

samters/

Tell Fakhri to do the same.

Ken West

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Guest guest

Hey Ken:

Did that letter work? I usually try to start off assuming ignorance

instead of anything worse on the part of the article's authors and

newspaper's management.

I would have written it differently... something along the lines of:

=================

Dear xxx:

I read with interest your recent article about Samters Triad and was

surprised by some of the advice that was mentioned in that article.

I have had Samters Triad for xxx years and am the co-founder of an

online discussion group about the disease. We currently have xxx

members. Members frequently discuss their treatment regimens with

other members and we find this helps supplement the information that

comes from each member's doctor. After all... with xxx members each

with their own doctor and their own years of experience with the

disease, the content of our discussion group is a valuable resource

for anyone with this disease.

In particular, I'm surprised your article did not mention the 2

treatments that our members find most effective. Nasal Irrigation and

Aspirin Desensitivity. I don't need to go into details of these

treatments here, as information about them is widely available on the

internet, but a treatment regimen involving 10 drugs is way overkill

for this disease.

Our discussion group is available at /group/samters/

Sincerely,

Ken West

===============

A little bit of sugar is better than vinegar.

Mike

>

> Done. My letter below.

> I just get more and more angry at story after story of doctors not

knowing

> what they are talking about, and pretending otherwise.

> Thanks, Lori.

> --

> Ken West

>

> > From: " truelori " <lori@...>

> > Subject: Re: houston chronicle

> >

> > Here is a link to the article.

> > http://www.chron.com/disp/story.mpl/health/3758123.html

> > I am going to write to the editor and tell them about our group and

> > that there are other treatments available. Maybe others want to do

> > the same.

>

> Houston needs to get with it.

>

> Nasal irrigation can hold polyps at bay.

>

> Aspirin desensitization eliminates the risk of an ASA-induced attack.

>

> It is ridiculous that Atkinson is taking 10 medications per day and that

> Fakhri has nothing better to offer.

>

> (On the other hand, it is not unusual that physicians have no real

clue when

> it comes to Samters -- the problem is, they don't know, and don't admit,

> what they don't know.)

>

> Any article about Samters which does not reference desensitization

and/or

> irrigation is10 years out of date.

>

> If you are really interested in polyps and Samters, get a

membership

> and go to:

> samters/

>

> Tell Fakhri to do the same.

>

> Ken West

>

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Guest guest

Mike, I definitely agree with the " sugar " approach, in theory, and in

general. Thanks for taking the time to write the sugar version -- I might

use something like for future situations.

On the other hand . . . in this case:

1. There have been too many stories here, over the last 3 years, about

doctors not understanding Samters, but pretending they do, and passing on

misleading and potentially harmful recommendations to their patients.

A good example is all the ENTs who know only how to cut, and not much else,

and who do not undestand that cutting has only limited value to Samterites.

2. The doctor and the reporter are both getting paid, probably pretty good

money, to know what they are talking about.

If, as a doctor, you're getting paid money to be an expert, then you'd had

better be an expert or else earn scorn as a charlatan. How much money has

Fakhri made by treating his patients with only a primitive understanding of

treatments for Samters???

If you are a journalist who can't be bothered to Google " Samters Triad "

before writing an article about it, then I don't think you've earned your

pay check. (PS, I'm very pleased to note that this group come up first if

you use the Advanced Search for " Samters Triad " .)

3. I'm old enough, and have had enough ups and downs in building a business

to have little patience with " professionals " who are just cruising, and to

not care very much if a little vinegar drips on them. If being criticized

for being ignorant of something that they should know about means that they

will be less willing to bring their knowledge up to date, and to issue

corrections accordingly, then that defines their professional integrity.

Professionals should not need " sugar " .

Should I assume " ignorance, instead of anything worse " ?

Perhaps, but my whole point is that these people are being paid TO BE NOT

IGNORANT. (I wasn't accusing anyone of " anything worse " ). Compare that

to this group where much knowledge and wisdom has exchanged hands due to

people who are paid nothing but are willing to give as well as to receive.

I encourage all members here to be as critical and suspicious of their

doctors as they can without getting thrown out of the clinic.

Mike, you are certainly free to write your own letter to

matthew.schwartz@...

-- I guess it would be good if you did so, so that he won't think that this

group is full of cranky, impatient, unsympathetic, critical, curt, peevish,

ill natured, unforgiving curmudgeons. (Maybe Samters does that to people.)

--

Ken West

> From: " jamida " <davisjm@...>

> Reply-samters

> Date: Mon, 03 Apr 2006 16:39:40 -0000

> samters

> Subject: Re: houston chronicle

>

>

> Hey Ken:

>

> Did that letter work? I usually try to start off assuming ignorance

> instead of anything worse on the part of the article's authors and

> newspaper's management.

>

> I would have written it differently... something along the lines of:

>

> =================

>

> Dear xxx:

>

> I read with interest your recent article about Samters Triad and was

> surprised by some of the advice that was mentioned in that article.

>

> I have had Samters Triad for xxx years and am the co-founder of an

> online discussion group about the disease. We currently have xxx

> members. Members frequently discuss their treatment regimens with

> other members and we find this helps supplement the information that

> comes from each member's doctor. After all... with xxx members each

> with their own doctor and their own years of experience with the

> disease, the content of our discussion group is a valuable resource

> for anyone with this disease.

>

> In particular, I'm surprised your article did not mention the 2

> treatments that our members find most effective. Nasal Irrigation and

> Aspirin Desensitivity. I don't need to go into details of these

> treatments here, as information about them is widely available on the

> internet, but a treatment regimen involving 10 drugs is way overkill

> for this disease.

>

> Our discussion group is available at /group/samters/

>

> Sincerely,

>

> Ken West

>

> ===============

>

> A little bit of sugar is better than vinegar.

>

> Mike

>

>

>

>>

>> Done. My letter below. I just get more and more angry at story after story

>> of doctors not knowing what they are talking about, and pretending otherwise.

>> Thanks, Lori. -- Ken West

>>

>>> From: " truelori " <lori@...> Subject: Re: houston chronicle

>>>

>>> Here is a link to the article.

>>> http://www.chron.com/disp/story.mpl/health/3758123.html I am going to write

>>> to the editor and tell them about our group and that there are other

>>> treatments available. Maybe others want to do the same.

>>>

>> Houston needs to get with it.

>>

>> Nasal irrigation can hold polyps at bay.

>>

>> Aspirin desensitization eliminates the risk of an ASA-induced attack.

>>

>> It is ridiculous that Atkinson is taking 10 medications per day and that

>> Fakhri has nothing better to offer.

>>

>> (On the other hand, it is not unusual that physicians have no real clue when

>> it comes to Samters -- the problem is, they don't know, and don't admit, what

>> they don't know.)

>>

>> Any article about Samters which does not reference desensitization and/or

>> irrigation is10 years out of date.

>>

>> If you are really interested in polyps and Samters, get a membership

>> and go to: samters/

>>

>> Tell Fakhri to do the same.

>>

>> Ken West

>>

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  • 5 years later...

Just to let you know, the Houston Chronicle ran the article: “EARING LOOPS

ARE TRANSFORMING LIVES: Technology pipes sound directly to hearing aids or

cochlear Implantsâ€Â. It was a reprint of the entire article from the New

York Times. I had sent a link of the article to the Houston Chronicle Editor

Desk and asked if they would consider printing it. Houston has a population of

four million in city limits and many million in surrounding counties. It is the

fourth largest city in the US.

It would be interesting to hear how many other cities have picked up the

article.

Jess

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