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Topic: CH and Self-Help (Read 368 times) |
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JoeKen
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CH and Self-Help
« on: Apr 15th, 2003, 3:07pm » |
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Hi folks,
As any one who has read my postings before, I try to be original with my thoughts, so far without success, but I will struggle on.
Having gained universal confirmation, (from the 2 or 3 that responded to my previous posting), that this capitalist civilisation (?) that we live in is more interested in selling us many, many expensive doses of something to treat the symptoms, rather than one dose to effect a cure, perhaps something can be gained by trying to help ourselves a little more (than this very helpful web-site already does).
It's probably not much consolation to you, like it wasn't to me, but my GP once said that only the very intelligent get migraines. Based on my limited experience of reading this message board, the same could probably be said about CH sufferers, with one or two noticeable exceptions - no names, no pack drill!! It also goes without saying that we all have some sort of access to computers and the web.
Is it possible that someone with more 'puter savvy than me could put together a very large data base, somewhere on the Web, with a Questionnaire form which would automatically fill in the appropriate boxes on the data base. This could list questions on all the things that might have a bearing on our attacks, frequency, periodicity (?), severity etc, age, sex, age at onset of CH, etc, etc, etc. This data base could then be analysed statistically to try to identify significant indicators.
I hope that some of you think this may have some merit, and if it has aready been considered before and discounted, can i apologise in advance, (particularly to Jonny, he has a cruel tongue but a kind heart I suspect, but don't spread it around, he may get upset again.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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Bob P
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Re: CH and Self-Help
« Reply #1 on: Apr 15th, 2003, 3:35pm » |
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Click the survey button to the left and see the responses of over 12,000 clusterheads.
Also visit the Surveys page at the OUCH site where we're trying to get a little more specific re the things in the CH.com survey. Always open for suggestions for more useful surveys.
Our numbers are our best resource. With surveys we provide a valuable tool for medical researchers. As you all talk with your doctors and specialists, make sure they know we are willing to host any surveys on our site if it will help in their research.
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| « Last Edit: Apr 15th, 2003, 3:39pm 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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JoeKen
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Re: CH and Self-Help
« Reply #2 on: Apr 15th, 2003, 4:11pm » |
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Hi Bob,
Thanks for the pointer towards the Survey pages. I am no mathematician but they are both very basic. I had in mind something much more detailed, perhaps based on M/S Access or something similar, where significant combinations of symptoms or factors could be identified, and from which some meaningful statistics could be obtained, As an example, the column headings could be a list of all the various factors that CH sufferers think may have a bearing on their case - there would probably be hundreds of column headings, and most of them would probably be irrelevant, but until we ask the questions we ain't gonna get no answers. At the risk of stating the obvious, the line headings could be, for example, the sufferer's log-in name. This way we could identify the members of any particularly interesting cluster (no pun intended) of participants for further information requests.
As you rightly say, our numbers are our best resource, so let's use it. I dont have the ability myself, to set up the data base, but I am a great believer in statistics, particularly when we are faced with a plethora of apparently unrelated facts.
Anybody else out there with any thoughts on the subject?
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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catlind
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Re: CH and Self-Help
« Reply #3 on: Apr 15th, 2003, 4:57pm » |
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As a lover of database programming I could try to get something going. The amount of tables and the relationships would be massive. Not sure I can handle something that extensive, but I can try to set something up in either zim or oracle, or in access. I understand what you are differentiating between the existing survey and a database. At least I think I do. You are wanting a database of information that can be queried for several different connections. Our surveys show the raw numbers but can't be manipulated via queries (unless they are already done in a RDBMS format)
Bob, is it all done in a relational db or is it an enclosed entity?
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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jonny
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Cat,
Speak english will ya......LOL ;D
...........................jonny 
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catlind
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Re: CH and Self-Help
« Reply #5 on: Apr 15th, 2003, 5:05pm » |
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LMAO Jonny!!!
If I spell out RDBMS as Relational Data Base Management System will that help? LOL
Short of that, it's an electronic filing cabinet of information that includes EVERY symptom from everyone, only once, and then matched up with others.
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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jonny
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on Apr 15th, 2003, 5:05pm, catlind wrote:
Short of that, it's an electronic filing cabinet of information that includes EVERY symptom from everyone, only once, and then matched up with others. |
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So your saying it would weed out the Meegrainers? ;D
................................jonny
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catlind
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Re: CH and Self-Help
« Reply #7 on: Apr 15th, 2003, 5:24pm » |
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LOL yeah sumthin like that Jonny! Of course, I'm a meegrainer too 
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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brain_cramps
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Re: CH and Self-Help
« Reply #8 on: Apr 15th, 2003, 6:13pm » |
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on Apr 15th, 2003, 5:05pm, catlind wrote:| Short of that, it's an electronic filing cabinet of information that includes EVERY symptom from everyone, only once, and then matched up with others. |
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Cat
Don't over-simplify relational databases (or relational theory) or I could be out of work soon. 
Wait!!! I AM out of work. 
RDBMS guru ;D
grant
Oracle, MS-SQL Server, Sybase, Pervasive-SQL and some MS-Access (not really a RDBMS, more of a kiddies toy  )
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| « Last Edit: Apr 15th, 2003, 6:16pm by brain_cramps » |
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catlind
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Re: CH and Self-Help
« Reply #9 on: Apr 15th, 2003, 6:15pm » |
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ROFLMAO Grant!!!!!!!!!!
You're the guru, how bout you do the job? hehe
Cat whos not a guru just a wannabe
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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brain_cramps
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Re: CH and Self-Help
« Reply #10 on: Apr 15th, 2003, 6:18pm » |
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on Apr 15th, 2003, 6:15pm, catlind wrote:| You're the guru, how bout you do the job? hehe |
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I'd love to! (will it pay the rent? -- currently too busy looking for work )
grant 
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JoeKen
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Re: CH and Self-Help
« Reply #11 on: Apr 16th, 2003, 4:04pm » |
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To Catlind,
Now know what a RDMS is!! - thanks.
What you described sounds exactly what I had in mind, all we need now is someone learned enough and under-occupied enough to put it together. I can see that the task would be massive - I wonder if we can get some sort of grant from any of the Medical Charities to fund a Statistics Graduates to work it all out and design the questionnaire from which the data is automatically entered into the data base immediately the CH sufferer clicks the 'Submit' button - it would also make a great research topic for someone to earn their PhD or something similar.
Thanks for taking it seriously and offering to get involved - I am afraid that I only know just about enough on the subject (like most others) to be dangerous, so there is not a lot that I could do to help.
JoeKen.
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Not sure I should be here, but it's as near as I'm going to get to finding out what is the correct name for my condition. Usually KIP 5 or below but last up to 16 hours and always one-sided, behind the eye, usually right but ocassionally left.
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echo
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Re: CH and Self-Help
« Reply #12 on: Apr 16th, 2003, 4:07pm » |
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on Apr 15th, 2003, 6:13pm, brain_cramps wrote:
Cat
Don't over-simplify relational databases (or relational theory) or I could be out of work soon.
Wait!!! I AM out of work.
RDBMS guru ;D
grant
Oracle, MS-SQL Server, Sybase, Pervasive-SQL and some MS-Access (not really a RDBMS, more of a kiddies toy )
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Oh yah! I can change the sparkplug on a lawn mower! ;D ;D
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"If you love something, let it go. If it doesn't come back, hunt it down and kill it".
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Roxy
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Re: CH and Self-Help
« Reply #13 on: Apr 16th, 2003, 4:10pm » |
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on Apr 16th, 2003, 4:04pm, JoeKen wrote:
all we need now is someone learned enough and under-occupied enough to put it together |
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on Apr 15th, 2003, 6:13pm, brain_cramps wrote:
Don't over-simplify relational databases (or relational theory) or I could be out of work soon.
Wait!!! I AM out of work.
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Sounds like a perfect match to me...... ;D ;D ;D
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
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Big Dan
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Re: CH and Self-Help
« Reply #14 on: Apr 16th, 2003, 4:15pm » |
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What a buncha geeks....
.... seriously though, wouldn't it be nice to be able to change one's answers, or at least amend them, if say you're cycles or triggers, etc. change?...
-Big Dan
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Not going anywhere for a while?...
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brain_cramps
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Re: CH and Self-Help
« Reply #15 on: Apr 16th, 2003, 4:15pm » |
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on Apr 15th, 2003, 6:18pm, brain_cramps wrote:| I'd love to! (will it pay the rent? -- currently too busy looking for work ) |
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Nice try, Tracey. shoulda read on...
actually, I'm working on this in my free time while finishing up my OLD contract.
grant
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brain_cramps
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Re: CH and Self-Help
« Reply #16 on: Apr 16th, 2003, 4:18pm » |
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on Apr 16th, 2003, 4:15pm, Big_Dan wrote:| What a buncha geeks.... |
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got that right, Dan
on Apr 16th, 2003, 4:15pm, Big_Dan wrote:
Cycles (unused CPU time)
Triggers (see your relational theory text, kids!!!)
grant
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| « Last Edit: Apr 16th, 2003, 4:21pm by brain_cramps » |
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Roxy
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Re: CH and Self-Help
« Reply #17 on: Apr 16th, 2003, 4:30pm » |
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on Apr 16th, 2003, 4:15pm, brain_cramps wrote:
Nice try, Tracey. shoulda read on... |
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I did read on.......I just ignored that part. ;D
on Apr 16th, 2003, 4:15pm, brain_cramps wrote:
actually, I'm working on this in my free time while finishing up my OLD contract.
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That's awfully nice of you to do. Clusterheads worldwide will thank you.....
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Only two things are infinite, the universe and human stupidity, and I'm not sure about the former. (Einstein)
I used to have a handle on life....but it broke.
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catlind
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Re: CH and Self-Help
« Reply #18 on: Apr 16th, 2003, 5:15pm » |
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Isn't he sweet to do this and put up with me at the same time? LOL
Nothing like a guru that happily deals with a wannabe
Cat
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Bob P
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Re: CH and Self-Help
« Reply #19 on: Apr 16th, 2003, 5:28pm » |
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Cat,
They surveys give us the raw numbers shown in the bar charts and a delineated text file of the responses that can be imported in Excel and filtered for various responses. I'm no whiz on database stuff (the SQL version of this message board that I had on the CalOUCH site freaked me out). Doesn't sound like the surveys we currently use pump out enough Btu's to do what you're looking 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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brain_cramps
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Re: CH and Self-Help
« Reply #20 on: Apr 16th, 2003, 5:35pm » |
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on Apr 16th, 2003, 5:28pm, Bob P wrote:| a delineated text file of the responses that can be imported in Excel |
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OK... where do I get one?
grant
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Bob P
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Re: CH and Self-Help
« Reply #21 on: Apr 16th, 2003, 6:06pm » |
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They have to be downloaded from the server by the web master. I can get the ones from the 4 surveys on the OUCH site but the ones here at CH.com are DJ's domain (and I'm assuming they also give him the delineated file like the ones I run at OUCH do).
Sounds like you want a much more extensive survey though.
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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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brain_cramps
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Re: CH and Self-Help
« Reply #22 on: Apr 16th, 2003, 6:20pm » |
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on Apr 16th, 2003, 6:06pm, Bob P wrote:| Sounds like you want a much more extensive survey though. |
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scalable, extensible app!!!
actually, should be able to use data from either/both surveys
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catlind
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Re: CH and Self-Help
« Reply #23 on: Apr 16th, 2003, 6:21pm » |
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Bob, yes in the end a much more extensive survey is what we want. But we have to start somewhere
Or rather, Grant does
Cat
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A true friend is someone who reaches for your hand and touches your heart
If yer gonna be stupid, ya gotta be tough
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suzy617
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Re: CH and Self-Help
« Reply #24 on: Apr 16th, 2003, 6:49pm » |
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Wow, think I need to sign up for some puter lessons. ???
And I thought the puter was just for chatting and playing games...
suzy
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When God measures men, He puts the tape around the heart, not the head.
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