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Topic: O.U.C.H. Question (Read 496 times) |
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ClusterChuck
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O.U.C.H. Question
« on: Apr 3rd, 2004, 4:31am » |
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I did not want to shanghi another thread, and this is important enough to have its own thread.
These quotes are from the other thread, and the last two are from a thread on OUCH board:
on Apr 2nd, 2004, 5:10pm, Mr.Happy wrote:
just don't let this go to committee for discussion, recommendations, member input, open vote and BOD approval. Let's just Put `Em in the Mail......quick. |
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on Apr 2nd, 2004, 5:22pm, Charlie wrote:| Get it in the friggin mail. It's not something that needs committee approval......just an address. |
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on Apr 2nd, 2004, 5:37pm, Melissa wrote:
Cripes! OUCH is not gonna look for committee approval! Is this how OUCH is really perceived? Like a bunch of red tape, confusion and clutteredness?? I sure as hell hope not. We just wanna send out a professional letter, that's all. You know, I do take offense to the above quoted remarks because they supposedly reflect on my abilites, as I do work for OUCH.
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on Apr 2nd, 2004, 2:41pm, Melissa (in OUCH) wrote:| Now, as for writing it up, I will contact Ken Olson, the Media Committee Chair, to see what he thinks about this. I'll get back to you as soon as I can! |
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on Apr 2nd, 2004, 2:48pm, Melissa (in OUCH) wrote:| OK, I've sent an email to Ken with the link to this thread, and also the one at CH.COM. Now comes the waiting part. |
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Now for the question and then, I hope, discussion:
Is this the way OUCH is perceived?
Speaking for myself, YES! (unfortunately)
Melissa, please dont take offense at this. You and the rest of the officers and BoD members are good hardworking individuals, and I am GLAD to have each of you there. And, Melissa, you brought up the question, and I thought it a good one, and I want to see how the others feel about it. I want to help OUCH (and ultimately, all of us) in finding problem areas, and see what can be done to correct them. This is suppose to be a constructive thread. I do not mean this in a nasty or spiteful way.
How do the rest of you feel? Is this how you perceive OUCH?
Chuck
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KingOfPain
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Re: O.U.C.H. Question
« Reply #1 on: Apr 3rd, 2004, 5:15am » |
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Yes.
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pubgirl
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Yes
This is not a criticism as I am in no place to criticise as although I am a member and do post occasionally with ideas/comments I do not do any work. It is more a perception, and one perhaps more based on history than current state.
The smaller OUCHes probably find it easier to be more controlled, directed and focused.
The main OUCH message board here seems enormous, unwieldy, and on occasions the behaviour is unbusinesslike which is very offputting.
I would post this there, but since you ask Chuck.........
Wendy
Added to:
Is it just me, or would at least 8 committees confuse anyone and make it harder to keep track of things?
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| « Last Edit: Apr 3rd, 2004, 9:14am by pubgirl » |
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Melissa
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Ok Chuck, that's fair enough. I notice that for those on the outside looking in, things seem disheveled and uncaring. Now for those of us on the inside looking out, we are completely aware of the memberships frustrations, which is quite disheartening because we DO know the inner workings and what's going on. I think that all these things will eventually merge, once we get the legal thing taken care of, and we'll be free to speak more in detail without repercussions.
Just my opinion on this subject!
 Melissa
Modified to add: that we have to remember this is all being done on the internet, and not in person. Sometimes things can get confusing because we are not talking face to face.
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| « Last Edit: Apr 3rd, 2004, 9:24am by Melissa » |
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snyder
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Re: O.U.C.H. Question
« Reply #4 on: Apr 3rd, 2004, 8:43am » |
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I have found an idea swimming around in my head between attacks once in awhile about OUCH. When I log in there to the boards, no matter which one, I feel I am joining the middle of something and find I can't get a clear handle about what is being discussed so I give up. If there were a summary available, even i f just an outline, that I could use as a catch up I could get more involved. I know this is more work, but I am developing enough energy, since finding this board and joining OUCH, that I could see myself doing some of that summarization in the future perhaps.
It's only an idea. Maybe such summaries already exist and I just haven't found them yet.
Bill
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brain_cramps
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Re: O.U.C.H. Question
« Reply #5 on: Apr 3rd, 2004, 10:07am » |
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IMHO... Unfortunately, Yes.
Please realize this is NOT intended to be overly critical. Instead, it is simply a PERSONAL OBSERVATION.
While I realize there are a number of legal issues that the "principals" are trying to resolve, most members do not realize this. (Like most, I don't know the details and, in all fairness, they are none of my business.)
Having said that, a lot of seemingly simple decisions seem to go through the following process and take considerable time to resolve:
on Apr 2nd, 2004, 5:10pm, Mr.Happy wrote:| ...go to committee for discussion, recommendations, member input, open vote and BOD approval... |
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Note that I qualified the above statement with "seemingly simple decisions"... The emphasis being on "seemingly". Obviously, not all decisions being made are simple ones, but some that are seem to take quite a while to be agreed on.
Also, I think it might be beneficial for the "principals" to show a little more unity in their appearance to members, and the public in general. There always seems to be an argument or "bickering" of one type or another. As it is done with most businesses, couldn't the majority of that be worked out before being presented in a public forum? Shareholders in a company would run, and run fast, if they publicly saw that type of disagreement.
I know that I am not really in a position to be critical. I would like to be more involved but that is not currently possible. Hopefully, at some point in the not too distant future, I will be better able to.
Again, I'm not trying to be overly critical. These are only my personal observations.
Grant
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Prense
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Re: O.U.C.H. Question
« Reply #6 on: Apr 3rd, 2004, 10:29am » |
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yep...
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Mr. Happy
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Re: O.U.C.H. Question
« Reply #7 on: Apr 3rd, 2004, 11:22am » |
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No.
I've never seen OUCH better organized and working as a team, with definable goals on the table.
Quote:We've developed a cluster screening tool.
We have speakers lined up for the convention.
There is a new study being done on chronics.
There is talk of a new study for different dosages for imitrex.
The zomig nasal spray trials are almost ready to go live.
We have the Grant templates set up and ready to go.
We met and had extensive discussions with Glaxo.
We have done a sampling for $$ and triptan usage for Glaxo.
We have set up the outlines for education sessions.
We have set up the affiliation with the NECH and OUCH.
We met and had brief discussions with the Pfizer reps.
I am building an ongoing cluster library.
I have contact information for ACHE and AHS and info to resolve the conflict of information regarding the drip movie.
There was discussion regarding being on Oprah.
There was discussion on uniformity of chapters and they were particularly pleased with the PANJ set up.
The NECH suggested we reinstate dues.
We discussed the quality of life survey.
There is a CME cd called Migraine Blues with a cluster song/video on it that we have copies of.
There was discussion on an epidemiology and prevalance study for cluster headaches. |
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Looks good to me,
RJ
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pubgirl
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That's what I mean about the likelihood of it being historical.
Recently I have heard and read good things, but it still seems that the processes are making life harder for the people doing the work.
If we vote them in, they should have the power to act without agreeing every detail or asking the membership's view on everything or feeling they have to discuss it publicly.
If we don't like what they do, that's what elections are for!
I may not always agree with what the OUCH UK trustees do in every respect, but I support utterly their right to do what they think is in the best interests of OUCH.
Wendy
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| « Last Edit: Apr 3rd, 2004, 11:49am by pubgirl » |
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brain_cramps
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Re: O.U.C.H. Question
« Reply #9 on: Apr 3rd, 2004, 12:09pm » |
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Randy
While I realize that is a valid list and a LOT is being done, I was simply answering the question that was posed:
on Apr 3rd, 2004, 4:31am, ClusterChuck wrote:| Is this the way OUCH is perceived? |
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My assumption was that this question was relating to the preceding quotes in Chuck's post.
As far as your "joke" yesterday is concerned:
on Apr 2nd, 2004, 5:10pm, Mr.Happy wrote:| ...just don't let this go to committee for discussion, recommendations, member input, open vote and BOD approval... |
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In a LOT of cases (obviously NOT all), that seems to be closer to reality than most would admit.
just my perception,
grant
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Jackie
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Re: O.U.C.H. Question
« Reply #10 on: Apr 3rd, 2004, 12:21pm » |
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on Apr 3rd, 2004, 11:48am, pubgirl wrote:If we vote them in, they should have the power to act without agreeing every detail or asking the membership's view on everything or feeling they have to discuss it publicly.
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Wendy,
I agree with you 100%.
I see our officers and directors as hard working, dedicated people. Their job is a very difficult one. One of the problems they have is trying to please ALL the membership. That is impossible. Plus they have to conduct business via the net, phones, emails and chat. This has to be a slow going process.
They are working to get the foundation of OUCH where is needs to be so they can proceed with what the organization is really all about. Let's remember.....they have only been in office a few weeks. Once the OUCH house is in order they will rock and roll.
Jacks 
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Linda_Howell
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Re: O.U.C.H. Question
« Reply #11 on: Apr 3rd, 2004, 12:23pm » |
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Some members have CHaracterized the Board and its committees as disorganized and directionless, and other identifiers. Yet the Board is really just representative of the membership. They have differring opinions and are expressing them. Would you want less? It is important that all sides are discussed and hammered out. Then, the Board comes to an agreed option, as close to meeting the needs of all as is possible.
With the large membership that OUCH has it will never be possible to work the way each member would see it work; nor, could the Board decide in a way that will meet each persons preference 100 % of the time.
So, has the Board lost its way? Not at all. However, it is a lot like the story of 3 blind people standing next to an elephant, one holding a leg - thinking it is a tree, one holding the tail - thinking it is a snake, and one holding the trunk - thinking it is hose. It takes time to put pieces together and correctly identify and build the elephant/organization.
The members input is valued by the Board, bringing additional ideas that help formate the solutions. Do not lose that opportunity to participate. Also, do not misunderstand responsible deliberation and healthy discussion prior to voting, for something it is not.
Now, A good Cat fight. There's something I can get behind. Any takers? 
Lin-duh
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BobG
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Re: O.U.C.H. Question
« Reply #12 on: Apr 3rd, 2004, 8:13pm » |
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No.
And ditto what Mr.Happy, Jackie and Linda_Howell said.
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Mark C
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Re: O.U.C.H. Question
« Reply #13 on: Apr 3rd, 2004, 9:38pm » |
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Perceptions can be deceiving.
Your BOD has been working their butts off to do the members bidding. This is not an easy task for any involved nor do I believe any of your nominated and elected servants or appointed committee chairs. Cyberspace does not lend itself to communication the way sitting around a big ole conference table does.
As previously stated we, as a board, are not only aware of member frustrations, we share them. We are in the same boat.
I am frustrated to be so passionate and wanting so bad to do the right thing for the membership that it is a little dishearten to read so many posts perceiving the board as disorganized. You know, maybe we are a little disorganized, but it is organizing very fast. We learn quick and we have to learn how to do this on the fly...that’s OK too.
I am very proud of the work accomplished so far by your current BOD and you should be too. Great things are happening.....we are doing what you elected us to do.
At time it seems we are damned no matter what we do and we have also determined that no matter what we do not all will be happy. So be it. Again, as stated before complete satisfaction across the membership spectrum is an unrealistic goal and we do not harbor such a fantasy in your BOD. However, we DO strive to make the best-informed decisions we can and at times that is a process. This whole thing is a process that will not cease until a cure for Clusterheadaches is found, and it will be found, and when it is we can say we had a small part in aiding that. I hope to be a part of OUCH being disbanded one day because we are no longer needed.
I sit on your BOD and I have trouble keeping up with all that is going on and keeping contacts handy and who is doing what. We work hard folks...this is a job. I think we knew that when we accepted your nomination and you elected us. There was a reason you elected us and we are doing our best.
In an effort to remedy some of the communication problems I started this thread to make your BOD and Officers avaliable. Current email address, home adresss and even personal phone numbers are posted in the public area for ALL to see. Even this seeming harmless gesture was met with some controversy. Again I say, this is work. Please contact your BOD for any concern about any OUCH business, we have an open door (or in-box) policy.
In closing, we share your frustration. We are only doing what we, as a board, see as what is best for the membership.....and we could use a little support every now and then. Pats on the back go a long way in something like this. And if you think it's easy, come on down and join a commitee or even run for OUCH prez.....I for one would be glad to have a hundred people working on this with us.
In loving service,
Mark Cox BOD
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ClusterChuck
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Re: O.U.C.H. Question
« Reply #14 on: Apr 3rd, 2004, 10:08pm » |
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I started this thread because I felt Melissa had asked a very valid question. I wanted to see what the "perception" of the OUCH leadership was. I felt the officers and BoD should see what the "perception" is. I put it here in ch.com and not on OUCH, because I wanted to get wider readership. Unfortunately, not enought clusterheads go to OUCH. I feel that this erroneous "perception" is part of the reason.
I answered YES to the question of the "perception" of OUCH. I DO NOT think they are as percived. I have spoken with some of the officials on the phone, and through email. I know how hard they work. I know many of the problems they are dealing with. This thread was not to bad mouth the organization or the current office holders. I am proud of the work and dedication they all have. Do I want ANY of them to be replaced? NO FREEKING WAY!!!!! Am I happy with everything they have done? No, nor will I ever be, nor will anyone else. Do I think they are doing the best they can for what they believe to be the best for the organization, and its goals? Absolutely!
Mark brought up a VERY valid point. They all deserve a pat on the back. It is a difficult and many times thankless job. I think all of you are doing the best that you can, with the restrictions, problems, and road blocks that are thrown into the mixture. If I was smart enough, I would be able to find a smiley giving a pat on the back for each and everyone of you, but as I am not as good as KOP, I will just use these:
 
Now, what can any or all of us do to correct this misconception of the officers and BoD?
Chuck
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jonny
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All I have to say is bring back the $25 membership fee and lets see who pays for 32 (Not including myself) people to join.
I did, would you?
Do you hear me bitching?
Man, if you hired me to do a job and then started bitching id throw the material in your face.....These people do not get paid....Get IT?
................................jonny
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Kevin_M
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Re: O.U.C.H. Question
« Reply #16 on: Apr 3rd, 2004, 10:44pm » |
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on Apr 3rd, 2004, 10:34pm, jonny wrote:Do you hear me bitching?
These people do not get paid....Get IT?
................................jonny |
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My so far unsaid thoughts.
Just getting to know them recently by posts only, I have
confidence in them. Damn good people, willing to take
the reins, putting their time where their mouths are means something.
*edit*
and putting your money there too jonny also.
Kevin M
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| « Last Edit: Apr 3rd, 2004, 10:48pm by Kevin_M » |
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Mikey
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Re: O.U.C.H. Question
« Reply #17 on: Apr 4th, 2004, 1:21am » |
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I'm on the fence rail about this one.
Atleast to me, it seems that way at times, and not at others......
I agree with Wendy, they shouldn't have to ask every member, about every little thing!! The Organization should be able to make it's decisions without this, that is what we elected them for, but on the other hand, when it comes to something extremely big, and possibly could cost O.U.C.H a great deal of heart ache in some form or another, then maybe we would need to involve everyone in the organization on the matter.
My 
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Charlie
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Re: O.U.C.H. Question
« Reply #18 on: Apr 4th, 2004, 6:29am » |
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The people are great......with our group, it's almost a given and this is healthy. There have been a couple of times over the years where "bylaws" had to be consulted for everything. No they don't. I'm not active on the committee so things look better.
Charlie
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KingOfPain
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Re: O.U.C.H. Question
« Reply #19 on: Apr 4th, 2004, 12:24pm » |
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on Apr 3rd, 2004, 10:08pm, ClusterChuck wrote:
I would be able to find a smiley giving a pat on the back |
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Here you go Chuck, use as you wish.
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| « Last Edit: Apr 4th, 2004, 12:31pm by KingOfPain » |
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Arrived August, 1999.
We swallow greedily any lie that flatters us, but we sip only little by little at a truth we find bitter.
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Real friendship is shown in times of trouble; prosperity is full of friends. - Euripides
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