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Topic: Food for thought....!? (Read 400 times) |
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Cerberus
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Food for thought....!?
« on: Nov 18th, 2002, 12:43pm » |
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Here's some food for thought.....
As I was recently diagnosed with CH and have spent some time here already I can't help but notice..
There is alot of theorizing going on on this site, myself included, Obviously....WE want answers and a "cure" for this horrible trauma we experience. Most of my personal theories are just a way to keep my mind occupied, and think of something OTHER than the pain I am in or about to be in. If I happen to come up with something that benefits everyone then great! if not, well, dang it all!
What I have seen most though is this......Physicians are under-educated on CH. This may be true, however, I have to wonder if the Opposite is not also true. SOCIETY is under-educated on CH. Afterall folks....we represent 0.07% of the population, so why should the medical community pay any attention to us with other more common illnesses such as Cancer, Heart Disease, etc.? WE ,as a group need to focus equally on society as we do doctors.
There is a saying at my job.... that if you aren't getting what you want, you aren't yelling loud enough to the right people.
In our case, I personally believe this is partially true. Don't misunderstand me, Doctors DO need more education on CH. This I will totally agree on. What I think needs to happen to achieve this is that we need to scream loudly to the general populous to get the results we are wanting.
If the public understands the problem ,THEY will push with us for better education and treatment. We are being partially ignored because of our deficiency in numbers.
example: Specialists (neurologists) tend to be MUCH more versed in the CH department than Family practitioners be it with or without our help. And a great deal of research is coming from the wrong places, such as sleep centers as opposed to direct neurological study.
The A.C.S. (American Cancer Society) currently has a list of probable "cures" for 36 different kinds of cancer that the FDA will not approve mainly because the pharmaceutical companies are making a Killing on research and development as well as practical treatment. If the FDA approves these cures the pharmaceutical companies lose literally Billions of dollars.
The facts are that as long as "big business" is in control of the Government we will not see a "cure" for anything, let alone CH being such a small portion of the big picture.
WE, ladies and gentlemen, are a Pharmaceutical companies' "wet dream" and an Insurance companies' "Nightmare".
In order to get the results we want we have to pressure Society to make the changes happen WITH us.
anyone disagree?
Captain R.D. Brown
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Ted
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Re: Food for thought....!?
« Reply #1 on: Nov 18th, 2002, 1:20pm » |
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You don't really check out the buttons to the left much, do you?  Check out the media area and OUCH.
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Cerberus
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Re: Food for thought....!?
« Reply #2 on: Nov 18th, 2002, 1:26pm » |
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Gee Ted. sorry but I am NOT amused...I get limited computer time and when I can actually manage to navigate a website (you know the pain thing) I do as best I can.
As far as OUCH goes just managed to join today so I'm working on it. any other sarcastic comments? 
Cerebus
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Ted
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Re: Food for thought....!?
« Reply #3 on: Nov 18th, 2002, 1:35pm » |
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on Nov 18th, 2002, 1:26pm, cerebus wrote:As far as OUCH goes just managed to join today so I'm working on it. any other sarcastic comments?
Cerebus |
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Plenty. But I'm busting a gut trying to be good. Oh, and you're welcome. 
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Ueli
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Re: Food for thought....!?
« Reply #4 on: Nov 18th, 2002, 1:46pm » |
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Hey captain,
are you coming from the "wellness" or "food additions" or a "traditional medicine" corner?
These guys always blame the pharmaceutical companies to suppress out of "greed" all their marvelous "natural" stuff.
Just some quick questions: From what corner came the antibiotics that have added some 30 years to our life expectancy? What "natural" remedy or "traditional" treatment are as effective for heart disease or clusters as the pharmaceutical products? Damn it, but it's a fact, if you're looking for something more than heal a bruise, a deep understanding of the human body and its chemistry is needed. Looking for a new twist of yin and yang and finding a new meridian to channel money from a suckers pocket will not bring one more healthier person.
Quote:| The A.C.S. currently has a list of probable "cures" for 36 different kinds of cancer that the FDA will not approve |
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Aren't we lucky that a government organization is watching for us and wants a bit more proof than the label "probable cure" before approving a new snake oil treatment?
Since you insinuate that the FDA is acting solely in the interest of the pharmaceutical companies, I do not hesitate to call you an idiot and ignorant moron.
Your "food for thought" turns out to be nothing than crap.
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Slammy
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Re: Food for thought....!?
« Reply #5 on: Nov 18th, 2002, 2:38pm » |
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Quote:.....mainly because the pharmaceutical companies are making a Killing on research and development as well as practical treatment. If the FDA approves these cures the pharmaceutical companies lose literally Billions of dollars.
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I wonder where this theory comes from? My wife is a biostatistician for one of the largest biotech firms in the world.. Amgen. They do not make billions on research and development.. they SPEND millions on research and development! These companies make their money on the SALE of FDA-APPROVED DRUGS. That is their cash cow!
The FDA requires tremendous amounts of clinical trials with tons of data prior to approving a drug. Because of these requirements, most prototype drugs never make it. Not because the FDA doesn't approve them, it's because the companies pull them when the results of the clinicals show the drugs fail to pass!
Regulatory Affairs is the Quality Assurance of the bio-tech world, and we are fortunate to have them!
Slammy 
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| « Last Edit: Nov 18th, 2002, 2:39pm by Slammy » |
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That's it! Everyone out of the pool!
" Everytime I try to get out, they PULL me back in! "
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Bob P
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Re: Food for thought....!?
« Reply #6 on: Nov 18th, 2002, 3:08pm » |
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So, which of those jobs you listed are you volunteering for?
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Ted
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Re: Food for thought....!?
« Reply #7 on: Nov 18th, 2002, 3:54pm » |
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on Nov 18th, 2002, 3:40pm, cerebus wrote:| am I now?......Ironically you missed the whole point of my post yet I'm the idiotic/moronic one hrmmmmmm. |
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Seeing you quoting nothing throughout this and ending it with this sentence... you really make it hard trying to be good. But I will be. No sarcasm here.
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Cerberus
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Re: Food for thought....!?
« Reply #8 on: Nov 18th, 2002, 4:00pm » |
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Geez...you guys! You are missing the entire point!
are you coming from the "wellness" or "food additions" or a "traditional medicine" corner?
These guys always blame the pharmaceutical companies to suppress out of "greed" all their marvelous "natural" stuff.
Did I say anything about "natural"? ???
From what corner came the antibiotics that have added some 30 years to our life expectancy? What "natural" remedy or "traditional" treatment are as effective for heart disease or clusters as the pharmaceutical products?
Again missing the point...and I still don't remember saying anything about "natural remedies" and historically the discovery of anti-biotics was totally accidental not to mention the movement that doctors "over-prescribe" them.
Aren't we lucky that a government organization is watching for us and wants a bit more proof than the label "probable cure" before approving a new snake oil treatment?
Are we lucky?..How about more absolute and thorough testing before labeling something as "snake oil treatment" that is where I'd rather my money go.
Personally .....forbid it should ever happen...if i get cancer I personally garantee not to rule out "anything" to find a cure. All You have shown in this statement is a willingness to quit.
Looking for a new twist of yin and yang and finding a new meridian to channel money from a suckers pocket will not bring one more healthier person.
I don't remember asking for money just recognition of the disease and how to possibly get it.
Since you insinuate that the FDA is acting solely in the interest of the pharmaceutical companies
never Said this either.... YOU insinuated that. Money IS however a huge motivator in all things businesslike.
I do not hesitate to call you an idiot and ignorant moron.
am I now?.......this was simply un-called for on your behalf, you can kiss my royal red ***.
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Cerberus
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Re: Food for thought....!?
« Reply #9 on: Nov 18th, 2002, 4:17pm » |
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never said I was perfect Bob... ;D
as for which position I am volunteering for? I am willing to help in anyway I can. are you? I think I mentioned TEAM somewhere in there.
Slammy......to a good portion of what you said, I digress. My next question is that if a "viable" cure for something such as cancer IS found and the FDA DOES approve it.....Will it automatically be given to those who need it? No....It will probably be Sold to the highest bidder and doled out on the principle of who can afford to pay for it.
IT's plain SAD but who regulates the regulators?
it is at this point that I would like to remind everyone that the original post WAS the musings of being bored and simply MY OPINION nothing more.
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Bob P
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Shut up Bob!
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Re: Food for thought....!?
« Reply #10 on: Nov 18th, 2002, 4:46pm » |
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Well lets see. Am I willing to help OUCH? That's a tough one, I'm gonna have to think on it for a while. Ya see, I'm not in cycle and I'm a pretty busy guy. I really hate to get all tied up with these kind of deals.
I'll get back to ya, say after December, when my term as OUCH President is up.
But if ya want to jump in and act on some of the things you list that WE should do, I'm sure the new Pres., Don, can find a project for ya.
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| « Last Edit: Nov 18th, 2002, 4:47pm by Bob P » |
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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jonny
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Re: Food for thought....!?
« Reply #11 on: Nov 18th, 2002, 4:53pm » |
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Yeah!!!, are you willing to help OUCH, Bob?......LOL
Bob, has done more for OUCH than any person alive in my book. and I say we keep him as Prez and send Don packing (sorry Don, you know I love ya)
........................jonny
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don
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Re: Food for thought....!?
« Reply #12 on: Nov 18th, 2002, 5:00pm » |
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I agree. you guys should pack me off to some remote caribbean island full of sex starved virgins with no hope of return. Drop me off and SINK THE FUCKIN BOAT!
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jonny
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Re: Food for thought....!?
« Reply #13 on: Nov 18th, 2002, 5:10pm » |
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Well fuck!!!!
Im comming with you, get milkweed out of my seat!!!
.................jonny
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Bob P
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Shut up Bob!
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Re: Food for thought....!?
« Reply #14 on: Nov 18th, 2002, 5:15pm » |
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I'll see you guys when you get here!
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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Cerberus
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Re: Food for thought....!?
« Reply #15 on: Nov 18th, 2002, 5:46pm » |
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Look I'm sorry, Bob, I'm not trying to hinder any progress anyone has made or challenge anyones contributions. My posts were just personal thoughts made mostly to quell my physical pain. the Whole Idea of this CH thing is new to me as are the websites. Like I said I'm getting there.
I tend to spout off at the mouth, and I wish no one any harm or ill intentions I just want answers to questions that no one can answer it seems. You seem to be one of those that understands this. So if I can help in some way pls let me know but to save face I will more or less disappear and deal with my pain on my own from now on. Apparantly the need to understand escapes some of those who reside here.
I have read a great deal of literature on the subject of CH and a great deal of it still escapes my understanding.
I am not a politician, lobbyist, or anything more than a highly upset opinionated individual who cares for the well being of others but I need to vent and when people dismiss me without regard for personal experiences and or culture I get pissed.
I want help exposing this to the world as much as the next guy/gal but I am also an Artist and have very little experience beyond the visual arts. I have been a Loner for quite some time now, besides my family, and was elated to know that what I am going through was not just me and was happening to others as well, even Ueli , but at the same time horrified for everyone who experiences this pain. I am angry that I have CH and venting is one of my ways of coping.
Am I feeling sorry for myself? NO...I feel more sorry for my wife and kids they are the ones that have to deal with me on a daily basis. Heck....I probably even deserve to have this horrible pain inflicted upon me.
If I can help let me know, but, I won't post anymore cause I don't want to spoil everyone's little "click" but I'll be around its a big world.
for the rest of you who don't get it, all I can say is .....go figure, par for the course.
Capt. R.D. Brown
To those who offered words of support and encouragement....Thank you...you know who you are and It was fun while it lasted.
Cerebus
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I would rather face the end with terror than terror without end. - (Deitrich Sawatsky 194?)
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Slammy
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Re: Food for thought....!?
« Reply #16 on: Nov 18th, 2002, 6:11pm » |
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Hey Capt'n
Just because I disagreed with your premise, doesn't mean I don't respect your right to post it, much less believe in it. Don't let that prevent you from posting....our thoughts and positions on this mb change and evolve over time as we gain more knowledge and understanding of each other that reside here. Don't give up so easily....
Slammy
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That's it! Everyone out of the pool!
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Bob P
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Shut up Bob!
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Re: Food for thought....!?
« Reply #17 on: Nov 18th, 2002, 6:14pm » |
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I do have differnet feelings about educating the public. I don't think that Joe Blow, on the street, who doesn't have CH and doesn't know anyone with CH, gives nor will ever give a rats ass about clusters.
I think we need to pick our targets.
We need to keep hitting the drug companies (BTW, when I was talking Glaxo out of that $2,500 grant, they mentioned how they had hoped some of the other companies would have joined in the development of an injectable triptan so the cost of R&D would be shared some). But not just hit them up for money but also get them to lobby the insurance companies to supply us with the quantity we need. I've tried throwing the CH numbers at them (based on 0.1% of the population having CH). Telling them how many sales they are losing because the insurance co's won't let us have the meds. How they need to train Dr's to prescribe the stuff and force the ins. co's to supply it.
We need to train the docs, like in Don's med student liaison person suggestion. I think OUCH needs to commit right now to pay Don's way to the IHS symposium next year. At least he can run around in an OUCH t-shirt and get us noticed. Sure wouldn't hurt to have our Prez rubbing elbows with the big wigs (Goadsby, Kudrow, Dodick, etc.)
We need public exposure for one reason only. To find the other sufferers out there that don't know they can come here and get help. To help the ones who don't know what they have, get a correct diagnosis, even if they have to diagnose themselves.
I don't think big business running the country has anything to do with anything. Heck, this country was founded on free commerce. No reason to hate the guys who were successful at it.
BTW - Where does the Capt. come from? Military? Law enforcement? Seafarer?
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Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
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SFChris
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Re: Food for thought....!?
« Reply #18 on: Nov 18th, 2002, 6:17pm » |
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This has been one of the more interesting debates (positive and funny) I have seen here in a while...
Chris
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don
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Re: Food for thought....!?
« Reply #19 on: Nov 18th, 2002, 6:18pm » |
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Are you kidden me? Milktoast is the key to our happiness.
Women love that mutt!
Quote:| Don, can find a project for ya. |
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1st project...........build us a boat
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| « Last Edit: Nov 18th, 2002, 6:20pm by don » |
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jonny
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Re: Food for thought....!?
« Reply #20 on: Nov 18th, 2002, 6:24pm » |
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"I wont post anymore".......LOL
girl thingy!!!!
Cry baby!!!!!
Wake up will ya?
...........................jonny
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Weldon
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Re: Food for thought....!?
« Reply #21 on: Nov 18th, 2002, 7:30pm » |
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Hey Capt. Ive got some dr.s that are friends of mine and they feel the same as you . Weldon
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Charlie
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Re: Food for thought....!?
« Reply #22 on: Nov 18th, 2002, 8:32pm » |
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A lot of what is posted here is right or thoughtful. Some of it just ranting. Most of it interesting, especially the picture of Don and Jonny stranded on a mosquito infested, volcanic, Caribbean test range. Poor Mildred has to stay here though.
Just don't get too serious. The silly part keeps us alert.
Charlie
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There is nothing more satisfying than being shot at without result---Winston Churchill
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