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        New Message Board Archives >> 2003 Posts >> New format for Rome
        
(Message started by: don on Jul 9^th, 2003, 9:08pm)

Title: New format for Rome
Post by don on Jul 9^th, 2003, 9:08pm

Originally we were asked to come to the table with three questions. Goadsby and his colleagues expected two or three of us. There will be 10 of us! We cant dominate the discussion so I will wittle it down to one question that covers a lot of ground.

My thought.

How do we develop a standardized diagnosis protocol for US neuros andhow do we sell it to them?

Reasoning. Simple. How many of us had gone thru years and years of misdiagnosis and how many suffers are still going thru that indignity and are not being properly treated? The pharmacuetical companies want numbers but our power base of numbers is being deprived because of misdiagnosis. If there were a protocol for dianosis then cluster sufferers would be identified as such and the numbers may have the med suppliers taking notice. For us that means better treatment and an improved quality of life. For them it would mean profits and a willingness to advocate for us to the insurers.

This is the longest post I have ever written and I hope I never have to do it again. :-/

Title: Re: New format for Rome
Post by Live4Fun on Jul 9^th, 2003, 9:16pm

Don,

I hope you didn't sprain your fingers with all that typing. ;) ;D

I agree 100% with your idea. Go get 'em!

Bryan

Title: Carrying coal to Newcastle....(was Rome.etc)
Post by Not4Hire on Jul 9^th, 2003, 11:42pm

on 07/09/03 at 21:08:36, don wrote:

Originally we were asked to come to the table with three questions. Goadsby and his colleagues expected two or three of us. There will be 10 of us! We cant dominate the discussion so I will wittle it down to one question that covers a lot of ground.

My thought.

How do we develop a standardized diagnosis protocol for US neuros and how do we sell it to them?

Reasoning. Simple. How many of us had gone thru years and years of misdiagnosis and how many suffers are still going thru that indignity and are not being properly treated?
...I am with you so far.... but then, ya go off.....

The pharmacuetical companies want numbers but our power base of numbers is being deprived because of misdiagnosis. If there were a protocol for dianosis then cluster sufferers would be identified as such and the numbers may have the med suppliers taking notice. For us that means better treatment and an improved quality of life. For them it would mean profits and a willingness to advocate for us to the insurers.

This is the longest post I have ever written and I hope I never have to do it again. :-/

sorry bro, but ya start with diagnosis.... then ya get lost worryin' about them scumbag drug peddlin' MOFO's who tell the doctors

(...ok, i'm better now.... i've dropped the *device* and I promise not to take hostages...)

...how to prescribe ...... based on their profit margin..... yadda...

please remember who yer talking to.... DOCTORS--SCIENTISTS--the geeks who are most likely to find a CAUSE of this shit and will then need *subjects* to install ....BOLTS in yer neck... and bigASS stitches in yer forehead.... and live in castles on top of mountains n shit.....

(...ok, i'm better now.... i've dropped the *torch* and I promise not to use this pitchfork on anybody....)

...remember who yer talking to...
not bean-counters or sociologists.... not gummint lobbyists with an agenda to get votes or money...

don, these doctors are NOT worried about actuarial tables...
(...I sincerely HOPE...)
... they will (should) be receptive to diagnosis protocols....but SHOULD give a fuck LESS about who has insurance...

back to the question:

Quote:

How do we develop a standardized diagnosis protocol for US neuros and how do we sell it to them?

...don't make it *US* specific... there are CH sufferers in bumfuck IRAQ... they hurt no less than us and have no insurance either... I am sure these doctors (Goadsby et al.) are well aware of the fact that people suffer from mis-diagnosis... let them know that we (or at least I) are/am willing to do WHATEVER to make it stop hurting....

...and don, I still got yer back...even if you do end up asking some dumb (IMO) question...

....N4, another rant, another bumpkin....

Title: Re: New format for Rome
Post by don on Jul 10^th, 2003, 10:40am

They want it U.S. specific. They are asking that each OUCH rep bring an issue specific to their location.

The issue posed would be the "Standard Diagnostic Procedure"

The rest of my torturous monologue was just my reasoning as to how one leads to another, not discussion topics.

Make me do more typing not4 and I'm coming lookin for ya!

Title: Re: New format for Rome
Post by BobG on Jul 10^th, 2003, 1:33pm

don
You're the boss. Go with what you feel is best. And so far I think your idea is best.

Sorry you had to type so much. I know how it hurts, it happened to me once. Try ~~pot~~ ~~aspirin~~ ~~a nap~~...........dang, being a clusterhead there is no relief.

Title: Re: New format for Rome
Post by Not4Hire on Jul 10^th, 2003, 2:13pm

...oh.....well, OK then....

Quote:

Make me do more typing not4 and I'm coming lookin for ya!

....bring beer...and yer Velcro speedo..... :P

Title: Re: New format for Rome
Post by don on Jul 10^th, 2003, 2:18pm

I have a ticket for the Papal Audience on Wednesday morning.

Do you think he has a cookout after?

POPE GONE WILD !

Title: Re: New format for Rome
Post by BobG on Jul 10^th, 2003, 2:58pm

When you see the Pope ask him what he does with his old hats. Gifts? EBay?

That gentleman dresses better than Liberace ever did. :o

Title: Re: New format for Rome
Post by Donna on Jul 10^th, 2003, 8:08pm

Our biggest problem is getting our malady in the faces of docs everywhere.

They don't know what we have because they don't have a clue that it exists.....so they simply don't look.

How do we get their attention to the fact that CH even exists?

Glad you are representing us, don. Thanks. (Need someone to carry your suitcases?)

Title: Re: New format for Rome
Post by Riccardo on Jul 11^th, 2003, 6:39am

Just as a reminder...
The meeting in Rome will be held by neuros that know well clusters (they joined 6 years ago in the Cluster Club only for this)
So, I think, avoid subjects like misdiagnosis (they will be quite "not-prepared" and they don't do) and insurances (no similar things in UK, Italy, Germany and Spain, so they will NOT prepared).

Title: Re: New format for Rome
Post by CJohnson on Jul 11^th, 2003, 7:56am

A med that targeted the 5HT1d receptor without binding to other sites could abort CH attacks without some of the nasty side effects. How close we are to having such a drug would be interesting to know.

PFDANs
-Curtis

Title: Re: New format for Rome
Post by catlind on Jul 11^th, 2003, 7:58am

I really would love to see someone present the information gathered on the indole ring hallucinogens and try to get some research going on why they work with the hopes of eventually getting a medication that works that same way.

Cat

Title: Re: New format for Rome
Post by stuey on Jul 11^th, 2003, 2:37pm

I hope the trip is positive and informative. I think diagnosis is a key, but I hope they can offer something that really works on a broader more unified basis as far as preventatives and treatments is concerned. To hear let's try this, maybe this or perhaps this, is frustrating to all of us. If we all have the same illness a treatment that worked for all or as close to all as possible other than Imitrex would be nice.