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Medical Forum / Diseases and Disorders / Tinnitus / October 2004

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Sorting the Good from the Bad from the Ugly

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jganders - 20 Oct 2004 19:27 GMT
In Francis Poons's post "You can't fool all the people all the time",
he wrote the following 2 paragraphs.  I'd like to address this
separately from his post because if we had an answer to his basic
question, "how on earth could we tell the quacks from the non-quacks,
the true from the false?", I feel we'd all be better off.

Francis wrote:
"Given the millions of kinds of treatments/medicines around the globe
since time memorial, how on earth could we tell the quacks from the
non-quacks, the true from the false?  We could form associations,
professional bodies, etc.  But in doing so we could also create
monopolies to the detriments of the patients.
Thus the only way by which we could filter out the quacks is to apply
the concept of market demand.  That is to say, if a method, or a
medicine, were in continuously high demand over time, it would show
that the consumers(patients) have found value in these treatment
methods a/o medicines.  The rest is less reliable as a yardstick to
judge."

Like Francis, I also, have been pondering this problem for some time.
I'd like to propose an implementation of Francis's idea.

"T-Gone", "Arches Tinnitus Formulas", "Serenitol", "Tinnitus Tamer",
"THE DETINNITISER", "Yong Sheng"

The quoted words above will most likely cause this post to be returned
in huge numbers to google searches in the very near future.  I'm pretty
sure that the searchers are going to be thousands of Tinnitus sufferers
looking for help.  For instance, they found "T-Gone" somewhere on the
net.  What wisdom will they get from this post?  Nada. Nothing.  Why?
Because this post can not provide data on the effectiveness of these
products and services.  Sorry searcher, but I dont think there *is* an
independant body of information about the effectiveness of the above
products and services.  All the searcher can hope to find are web pages
from product sponsers and an occasional parting reference by a news
group writer, like this one.  Sorry searchers, this will not help you.

So here's the point.
Why not use the internet to collect real, independant information from
people who have used these kinds of treatment/services for 'incurable'
medical problems?  For instance there are hundreds of Tinnitus
remedies/treatments for sale out there and you have to wonder if any of
them work, and to what extent?  Wouldnt you like to know?  The answer
*is* known by the individuals who have actually bought and used them...
But they do not provide feedback anywhere! I've yet to find independant
testimonials on the internet for any of these remedies/treatments.
"T-Gone", "Arches Tinnitus Formulas", "Serenitol", "Tinnitus Tamer",
"THE DETINNITISER", "Yong Sheng", to name a few. (This second reference
to these products will probably increase the search rankings!)  You
*know* there are people buying and using these products/services.  It
may be 'unscientific', but why not provide a web site where peeps can
be rewarded for posting journals about their experiences?  No
politicizing, just the facts.  What treatment/product? Your age,
gender, weight (other pertinant physical info), description of
symptoms, when Tinnitus started, when Tinnitus ended, dates of
treatment/service, final evaluation of effectiveness (1-10)....  Maybe
provide ability to enter weekly journal entires throughout the
treatment period.
Wouldnt this be cool?  This would put a serious dent in the sales of
quack treatments and snake oils.  For instance, the new Tinnitus
sufferer would find the new web site using google and do a search on a
particular treatment. They would immediately see the averaged score
from all the peeps who have taken it and read their journals if
desired. In many cases this will prolly result in a non-sale for that
treatment. Whereas the treatments that are beneficial (if any?) will
start to shine by those who give them high marks.
I'm sure those of you who are still following this post prolly have
already thought of many reasons why this may not work.  But I'd like to
address your issues.  For instance, I can of think 2 big issues.  One
issue is how to authenticate the journalists.  How would you prevent
someone from creating a treatment journal who's sole purpose is to give
the treatment high marks because they are associated with the products
sponsors?  Another issue is how to reward people to take the time to
create a treatment journal.  I think these issues are not
insurmountable.  These are actually very typical issues for web sites
that provide an open product-review abilty.

Feel free to email me privately if you want. I am an internet developer
by trade, specializing in dynamic, database-driven web sites.  I've
been in the computer business 22 years, sitting down with people
looking for ways to help them leverage the internet to their advantage.
I'm not looking for income opportunities here and and neither should
you.  I am a Tinnitus sufferer, only became aware of it this year.  So
I want to help myself and others, if possible, the best way I know how.
Hosting a web site can be done for well under $50/month and I feel that
all expenses for the web application I'm proposing can easily be
covered by site-visitor donations.  This post is just an initial
attempt to see if this idea has legs.  If your responses convince me
that this idea is full of deep holes then, of course, I will appreciate
your comments and abondon the idea.  This is not a project I will
undertake on my own. I have more than enough to do with my full-time
employment. I am not an independant contractor.  However, if I should
receive encouragement from enough people I will want to ask your
continued support in terms of participating in the functional design on
thru the final testing and implementation.  No money is involved.  In
other words, if this project moves forward it will not be 'my' project,
it will be 'our' project.  And, we will try not to waste each other's
time.  Thanx for your consideration.
Regards,
Jim Anderson
Bill - 20 Oct 2004 19:48 GMT
<snip>
> Why not use the internet to collect real, independant information from
> people who have used these kinds of treatment/services for 'incurable'
> medical problems?
<snip>
This would be great, Jim, if there was a way to tell which posts were
legitimate and which weren't.  I envision dozens of posts from people (or a
single person with multiple identities) who have a financial interest in the
product they claim worked for them.
Susan - 20 Oct 2004 19:58 GMT
>This would be great, Jim, if there was a way to tell which posts were
>legitimate and which weren't.  I envision dozens of posts from people (or a
>single person with multiple identities) who have a financial interest in the
>product they claim worked for them.

This reminds me of the Tripadvisor website for Newport, RI.  One B and B owner
has been posting positive reviews of her place to raise it in the rankings.
The other reviews make it sound kind of shabby and depressing.  One of the
guests caught the owner typing one of the bogus reviews.

Same thing is apparent on epinions, at times, so careful reading of many
reviews of a product is necessary to discern real information from promotion.

Susan
ENTconsult - 21 Oct 2004 04:53 GMT
Jim your ideas are swell. Unfortunaltely, the quackiest products have the most
glowing testamonials.
Some are sincere. They did take, Bora Bora Root or EErie Wax and felt better.
But was it the Bora root or time.
The biggest disapointment to any researcher is when he learns that the Placebo
is what "cured" instead of the drug.  But this happens. And about 35% of
placebo trials have side effects.
With 50 million T patients, if enough take Bora Bora root, there will be a
certain number of cures.
to me, testamonials are all suspect and  usually to be ignored. Look at the
diet ads!
Murray Grossan, M.D.
http://www.ent-consult.com
francispoon - 21 Oct 2004 19:11 GMT
> Jim your ideas are swell. Unfortunaltely, the quackiest products have the most
> glowing testamonials.
[quoted text clipped - 6 lines]
> certain number of cures.
> to me, testamonials are all suspect and  usually to be ignored.
--------------
You see.  That was what I have been saying all along.  That is, the
use of market demand to judge something on the basis that all
consumers could not be fooled all the time.  If something were in
continuous demand 'over time', that would be good _empirical
evidence_.

To repeat:"Thus the _only_ way by which we could filter out the quacks
is to apply the concept of market demand.  That is to say, if a
method, or a
medicine, were in continuously high demand _over time_, it would show
that the consumers(patients) have found value in these treatment
methods a/o medicines.  The rest is less reliable as a yardstick to
judge."

Remember that doctor at www.yongsheng.ca.  1/3 of her clients are
native caucasion people and they are increasing.  If her accupuncture
techniques had been that useless, no referral would have gone to her.

FP

Look at the
> diet ads!
> Murray Grossan, M.D.
> http://www.ent-consult.com
Bill - 21 Oct 2004 19:37 GMT
>> Jim your ideas are swell. Unfortunaltely, the quackiest products have the
>> most
[quoted text clipped - 30 lines]
>
> FP
I remember when Vioxx first came out.  Intensive advertising campaign to
build demand.  Demand didn't subside until enough people died to warrant
pulling it from the market.   Demand is a better indicator of advertising
success than product quality.
francispoon - 22 Oct 2004 04:51 GMT
"Bill" <Bill@myplace.now> wrote in message news:<GlTdd.85
snipped...Demand is a better indicator of advertising
> success than product quality.

Yes, short term.  Over longer term, something has to be useful in
order to hold water.
jganders - 22 Oct 2004 01:06 GMT
It's nice hearing 2nd hand about successes like your yongsheng outfit.
But I would prefer get it from the sources. Too much hearsay on this
site.  I want to read the words from people who have actually undergone
treatments and services.  I mean, if 20 yongsheng patients would take
5-10 minutes to go to a web site and answer a few well thought-out
questions (post a review), we would get a much clearer picture of the
benefit of the yongsheng treatment(s).  I  think that T sufferers would
be glad to share their experiences with other sufferers. Most people, I
think, feel a kinship with others in the similar, uncomfortable
predicaments.  Bu I dont think the newsgroup format is the best way for
people share this kind of information.  Who knows, if someone took the
time to search thru and collate the last 5 years of this newsgroup they
might find quite a few golden nuggets, maybe some people who have
written about their experiences with some treatment or another.  The
newsgroup format is too temporal, limited by the effects of time.  The
important information is scattered throughout, buried.  Like a bunch of
old post-it notes hidden around a room, searching for information is
like a scavenger hunt.
How you can approach this question by looking at market demand?  Where
is the data?  What organization is keeping track of the number of T
sufferers and what treatments they are undertaking to get relief?  Is
this newsgroup all there is?  I'd have to wager that conventional
medicine would show the largest market demand.  After all, that's what
we westerners do.  Go to the guy with MD in front of his name working
at a big pretty hospital.  So my $120 doctors fee shows up under the
column 'Medical Doctor Care'.  That column should be immediately
scratched off the list or else people looking at the report will say,
"Oh, most people go the doctor, I should go there!"  Or, maybe this
must necessarily be a rite of passage?  Every T sufferer must start
with the MD cuz its the "right" thing to do?  At least their insurance
may cover it.  After the obligatory doctors visit they can then get
down to really figuring out how to beat the T.  Oops, now they're just
left with ... no data.
Maybe I'm dreaming but I'm betting that there are thousands of people
out there who have found a workable treatment and just need someway to
tell everyone.  Once in a while someone writes an interesting post here
that says they tried something and it worked great.  Well, noone in
their right mind is going to go chasing after every such report.  Hey!
lets look in our database of reported treatments to see if anyone else
has had similar luck with that.  Oops, no such database.  Well at least
they took the time to post their news to this newsgroup.   Well thanx,
and wishing you well!  A few months later a similar post by someone
else. Hey, wasnt there someone else who did the same thing...? Not
sure.  Guess not.  Oh well.
Well, I gotta get over to post on alt.support.tourette now.  later...
Jim.
francispoon - 22 Oct 2004 20:15 GMT
> It's nice hearing 2nd hand about successes like your yongsheng outfit.

This accupuncturist is not a tinnitus specialist. Nor does she
specialise in treating tinnitus.  She just happens to be a good
accupuncturist and it so happens that her treatment managed to 'touch'
the root of my t.  She may not do it for another person whose cause of
t is somewhere else.  I know that practically all t sufferers are
looking for a standardized treatment by which they could all be
applied.  Unfortunately, this does not exist.  That is why I keep
contantly reminding the audience to trace out the cause of their T and
I stress upon the importance of the individual doctors.  *Who* is
doing the treatment seems more important than *what* is being applied.

> But I would prefer get it from the sources. Too much hearsay on this
> site.  I want to read the words from people who have actually undergone
[quoted text clipped - 13 lines]
> old post-it notes hidden around a room, searching for information is
> like a scavenger hunt.

Dear friend, i am afraid that is as much value as having paid nothing
could yield.  The other alternative is to visit doctors with
experience.  I suggested you to visit Murray.  He may be in a
different city from where you are but it is still worth going to see
him.  He has been around and has been syphoning out what he views as
the irrelevant.  You could not do better than that.  If you continued
to lament like a Chinese poet of the old time, your t would get old
and once it becomes old it would be harder to treat.  People who are
too capable of intellectualizing are less capable of actions. LEARN BY
DOING!  GO!

FP
Elly Byrne - 22 Oct 2004 21:17 GMT
>That is why I keep
>contantly reminding the audience to trace out the cause of their T

Most people have absolutely no idea what the cause of their T is.

Tinnitus is a pain in the neck
Elly's Tinnitus Resources
http://eebee.net/
francispoon - 23 Oct 2004 04:24 GMT
> >That is why I keep
> >contantly reminding the audience to trace out the cause of their T
>
> Most people have absolutely no idea what the cause of their T is.

Right.  Most doctors don;t know either.
====================

> Tinnitus is a pain in the neck
> Elly's Tinnitus Resources
> http://eebee.net/
jganders - 21 Oct 2004 19:18 GMT
Thanx for you comments!
So far all comments are concerned about the quality of user reviews.
I think there will be safety in numbers.  My hunch is that there are
plenty of people who are looking for help with their T because
conventional medicine offers no promise. My doctor told me there was
nothing he could do and I should try checking out homeopathic remedies
on the internet!  I'm sure a fair number of the 50 million T sufferers
surf the net looking for help.  They would easily find, appreciate, and
be happy to contribute to, a site that presents an unbiased source of
information and end-user evaluation on conventional and alternative
treatments.  The sincere reviews would bury the disingenuous by their
shear numbers.
At any rate, there are functional and technical methods to control
bogus postings.
-Members have to create a profile, provide an email.  The site only
approves the registration when the member clicks on a confirmation link
sent to them via email.
-The site allows only 1 review per treatment per member per internet
('ip') address per month.
-A Quality review board must approve the posting of all reviews for a
given treatment until 'x' number of reviews are logged.
-A Quality review board can remove questionable reviews.
-The site displays a caution message on the treatment review summary
page when there are less than 'x' number of reviews.

Other techniques can be used to identify the sincere from the
disingenuous.
-Forum and chat rooms
-Member profile page where members can post their favorite links to
informative articles and treatments
-Ability for members to rate other member treatment reviews; Helpful,
Not helpful, etc..
-Activity point system.  Members earn point for any forum posting,
review posting.
See www.experts-exchange.com for a site that seems to successfully
navigate these issues.

Regards,
Jim
Jim Chinnis - 21 Oct 2004 20:19 GMT
"jganders" <jamesanderson@yahoo.com> wrote in part:

>My doctor told me there was
>nothing he could do and I should try checking out homeopathic remedies
>on the internet!

He was probably a surgeon and wanted to get you anywhere else but his office.

No homeopathic remedy has been shown to relieve tinnitus, despite the fact
that many are claimed to work and that testing them would be pretty easy. A
successful test would lead to a huge pot of gold. What does that tell you?

Many tinnitus treatments are parts of what amount to multilevel marketing
scams. How many posts and emails have you received telling you that a
particular chain letter will "Make Money Fast," that it is perfectly legal,
etc? How many have you received telling you that that chain letter isn't what
it's cracked up to be?
Signature

Jim Chinnis / Warrenton, Virginia, USA
Want to discuss Meniere's? See http://groups.yahoo.com/group/MenieresDG

francispoon - 22 Oct 2004 19:06 GMT
"jganders" <jamesanderson@yahoo.com> wrote in message
snipped...
My doctor told me there was
> nothing he could do and I should try checking out homeopathic remedies
> on the internet!

Most doctors don't know how to treat tinnitus or do so poorly.  I have
so far been to almost 20 doctors of all kind and thus I am somewhat of
an authority in having made the above statement.

The reason why t is so difficult to treat is because the cause is hard
to find out!  A year ago, I was constantly complaining of 'red spot',
somatic pressure, etc in this ng and few here knew what it was going
on.  One doctor here even harshly lectured on me for not habituating.
It was only about 3 months ago when I went to try accupuncture that I
realized the cause of my t 'might' have been due to the nerve!

I searched for the cause of my t in the following areas:
(1)neck tension
(2)kidney
(3)inner ear
(4)nerve
(5)blood circulation in the head.

In the process I found them all related in ways about which most
'conventional' doctors have absolutely no clue.

So allow me to suggest you to do the following:
(1)Find a doctor who is experienced.  I recommend you to talk to
Murray because if Murray had not been good, the Chinese government
would not have invited him to go over there to give lectures.  The
_market demand_ for Murray shows you that he is qualified to make a
diagnosis, to say the least.
(2)Sleep without a pillow....this goes to cope with the neck tension
in (1)
(3)Have a chiropractic treatment at least once a week. This also goes
for (1).
(4)take a tablet of BETAHISTINE  after dinner. This goes for (3).
(5)after taking betahistine for about a week or so in which you record
how you feel, take a real gingko biloba pill with breakfast. This goes
for (2) & (5) above.

Your homeopathic remedies might be for the internal organs such as (2)
above. If you were experiencing nerve discomfort, go to check out with
a good accupuncturist.  I would recommend www.yongsheng.ca, NOT
someone who graduated from 'chinatown university' in San Francisco or
LA or Chicago....or Atlanta.

FP
===================
I'm sure a fair number of the 50 million T sufferers
> surf the net looking for help.  They would easily find, appreciate, and
> be happy to contribute to, a site that presents an unbiased source of
[quoted text clipped - 28 lines]
> Regards,
> Jim
Elly Byrne - 21 Oct 2004 21:55 GMT
>With 50 million T patients,

And that is only in North America.

Tinnitus is a pain in the neck
Elly's Tinnitus Resources
http://eebee.net/

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