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Title: CH and Self-Help Post by JoeKen on Apr 15th, 2003, 3:07pm :) 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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Title: Re: CH and Self-Help Post by Bob P on Apr 15th, 2003, 3:35pm 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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Title: Re: CH and Self-Help Post by JoeKen on Apr 15th, 2003, 4:11pm :) 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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Title: Re: CH and Self-Help Post by catlind on Apr 15th, 2003, 4:57pm 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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Title: Re: CH and Self-Help Post by jonny on Apr 15th, 2003, 4:59pm Cat, Speak english will ya......LOL ;D ...........................jonny :D |
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Title: Re: CH and Self-Help Post by catlind on Apr 15th, 2003, 5:05pm 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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Title: Re: CH and Self-Help Post by jonny on Apr 15th, 2003, 5:16pm on 04/15/03 at 17:05:11, catlind wrote:
So your saying it would weed out the Meegrainers? ;D ................................jonny |
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Title: Re: CH and Self-Help Post by catlind on Apr 15th, 2003, 5:24pm LOL yeah sumthin like that Jonny! Of course, I'm a meegrainer too ;) Cat |
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Title: Re: CH and Self-Help Post by brain_cramps on Apr 15th, 2003, 6:13pm on 04/15/03 at 17:05:11, catlind wrote:
Cat Don't over-simplify relational databases (or relational theory) or I could be out of work soon. :o 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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Title: Re: CH and Self-Help Post by catlind on Apr 15th, 2003, 6:15pm 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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Title: Re: CH and Self-Help Post by brain_cramps on Apr 15th, 2003, 6:18pm on 04/15/03 at 18:15:59, catlind wrote:
I'd love to! (will it pay the rent? ;) -- currently too busy looking for work >:() grant 8) |
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Title: Re: CH and Self-Help Post by JoeKen on Apr 16th, 2003, 4:04pm :) To Catlind, Now I 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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Title: Re: CH and Self-Help Post by echo on Apr 16th, 2003, 4:07pm on 04/15/03 at 18:13:36, brain_cramps wrote:
Oh yah! I can change the sparkplug on a lawn mower! ;D ;D |
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Title: Re: CH and Self-Help Post by Roxy on Apr 16th, 2003, 4:10pm on 04/16/03 at 16:04:14, JoeKen wrote:
on 04/15/03 at 18:13:36, brain_cramps wrote:
Sounds like a perfect match to me...... ;D ;D ;D |
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Title: Re: CH and Self-Help Post by Big_Dan on Apr 16th, 2003, 4:15pm 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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Title: Re: CH and Self-Help Post by brain_cramps on Apr 16th, 2003, 4:15pm on 04/15/03 at 18:18:31, brain_cramps wrote:
Nice try, Tracey. shoulda read on... ::) actually, I'm working on this in my free time while finishing up my OLD contract. grant 8) |
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Title: Re: CH and Self-Help Post by brain_cramps on Apr 16th, 2003, 4:18pm on 04/16/03 at 16:15:47, Big_Dan wrote:
got that right, Dan on 04/16/03 at 16:15:47, Big_Dan wrote:
Cycles (unused CPU time) Triggers (see your relational theory text, kids!!!) grant |
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Title: Re: CH and Self-Help Post by Roxy on Apr 16th, 2003, 4:30pm on 04/16/03 at 16:15:57, brain_cramps wrote:
I did read on.......I just ignored that part. ;D on 04/16/03 at 16:15:57, brain_cramps wrote:
That's awfully nice of you to do. Clusterheads worldwide will thank you..... ;) |
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Title: Re: CH and Self-Help Post by catlind on Apr 16th, 2003, 5:15pm 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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Title: Re: CH and Self-Help Post by Bob P on Apr 16th, 2003, 5:28pm 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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Title: Re: CH and Self-Help Post by brain_cramps on Apr 16th, 2003, 5:35pm on 04/16/03 at 17:28:01, Bob P wrote:
OK... where do I get one? grant |
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Title: Re: CH and Self-Help Post by Bob P on Apr 16th, 2003, 6:06pm 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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Title: Re: CH and Self-Help Post by brain_cramps on Apr 16th, 2003, 6:20pm on 04/16/03 at 18:06:19, Bob P wrote:
scalable, extensible app!!! actually, should be able to use data from either/both surveys |
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Title: Re: CH and Self-Help Post by catlind on Apr 16th, 2003, 6:21pm 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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Title: Re: CH and Self-Help Post by suzy617 on Apr 16th, 2003, 6:49pm 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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