Click this link to read a post I like on the clusterheadaches.com message board...

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Re: WTF O.U.C.H. ??
Reply #25 - Jul 3^rd, 2009 at 3:25pm

First, a "thank you" to Chuck for bringing this to the forefront.

Second, this is not an attack on anyone from the BOD of OUCH, nor should it be constued as one.

I am one of those who has never been able to participate in OUCH. I don't know why, but no matter how many times I have tried to register since the message board was shut down I cannot get on. I have tried under different names, passwords, etc, but have not been able to participate in any way.

I understand those who serve on the board also have a life to live outside OUCH, and I understand they have for the most part done a pretty good job working to get us the attention we need from the medical community. I am not unappreciative at all. That being said, it was alluded to earlier that only 70 people voted in the last election. I would have made 71 if I had been allowed to participate.

Jerry

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Re: WTF O.U.C.H. ??
Reply #26 - Jul 3^rd, 2009 at 3:30pm

Carl, I need to clarify a little; Thank you for your comments, as I didn't realize they might be seen as not wanting the discussion to begin;

I agree entirely that the discussion needs to be had. The AGM in St. Louis is the logical place and time for that discussion to begin and take place.

My concern is that, as stated in the OUCH BB Post (I've quoted it at the end of this post) is that not only will the discussion begin in St. Louis, but the desire is to begin AND complete the discussion. With only 43 listed attendees, I find it alarming that so few members will have the ultimate say in the future of OUCH (specifically if OUCH is to be dissolved) ;

I would think that there are other potential solutions for engaging more than the 43 convention registered members in the discussion; especially when the topic of discussion is of major significance to all members, and CHers in the US.

Cat

This is quoted from the OUCH Business Board on 06/08/09 at 11:02:31

Quote:

Below is a notice from the Board of Directors on the Agenda at this year's Convention. This will be the opportunity for Members participate in the planning of the future of OUCH.

Jim Welch
Treasurer
Convention Chair

Notice to OUCH Membership

The OUCH Board of Directors reminds all OUCH Members that discussions on the “Future of OUCH” will be held on Friday and Saturday at Convention 2009.

To be discussed:
Should OUCH continue to operate? OR.. How should OUCH continue to operate?

Please plan to Register and attend to voice your opinion and your suggestions.

Back ground –
OUCH has been unable to progress since its inception, and it becomes more difficult each year. Every administration has served while under attack. Some administrations lasted only months, one lasted two years. None has made any significant progress. Behind the scenes issues and online open attacks have paralyzed every administration from accomplishing anything beyond planning the next convention. There have been lots of proposals, suggestions, ideas and starts, but no completions of any consequence, save for a couple of convention grants. Every administration has been hampered by some Board members that would not perform and by individuals that would volunteer for committees or tasks then do nothing and lots of kibitzers (Those looking in from the outside throwing suggestions or complaints but not willing to get involved themselves). This unfortunately diminishes the few real efforts that have been given.

The Options -
1) OUCH could continue as in the past. (But then - who would be willing to be attacked at every effort. And is that just stalling the inevitable?)
2) OUCH could try to reorganize. (But who has the background and willingness to do it, what would be the changes and who would support the changes.)
3) OUCH could shut down. (Anyone could organize ‘Meet & Greets’ as that really seems to be the prime interest of most members.) (If OUCH folds it must then turn over its funds to another legal 501(c)(3) nonprofit organization, preferably in a like field.)

We wish all OUCH Members could participate. It is a very important subject; the conversation will undoubtedly have many twists and turns and thus, will require face-to-face sharing. We respectfully ask that this be an in-person at Convention discussion. We are planning on this being moderated to enable an orderly and a semi-formal meeting. We must agree on the outcome for OUCH by convention’s end.

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Re: WTF O.U.C.H. ??
Reply #27 - Jul 3^rd, 2009 at 4:07pm

I couldnt get onto OUCH to read this, but I have to say that I am sorry I read this thread. I have not gotten very excited to go to St Louis this time and now I am almost sad to be going.. I am so excited to see some people and very sad I wont see others but this kind of stuff makes me sick.

I want to say thank you to the OUCH people who work very hard. I havent done any work for the group, so I can not complain about anything you all have done or havent done.

I have no ideas on what to do with OUCh, but I hope to show up with open ears, an open mind, and open heart after a visit to the ego closet, where I hope I can check my ego and focus on the best interest of the group.

For those of you who cant go, I wonder if we can work with skype to make you all involved. I will try and tweet at the conference. I will be at the conference from Friday on (assuming travel goes well), so you can follow my tweets, however that works....

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Anyway, thats all I got.

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FrankF CH.com Alumnus Offline Posts: 397 Simi Valley, CA, USA Gender:	Re: WTF O.U.C.H. ?? Reply #28 - Jul 3^rd, 2009 at 5:35pm I joined OUCH when it was just forming, when it still had an anything goes messageboard that was inhabited mostly by some high school kids from this board. If the new OUCH is anything like the original OUCH, I think it should be allowed to die.
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seaworthy

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Re: WTF O.U.C.H. ??
Reply #29 - Jul 3^rd, 2009 at 5:41pm

Quote:

Back ground –
OUCH has been unable to progress since its inception, and it becomes more difficult each year.

You've got to be kidding me? Unable to progress since inception?

If my history is correct OUCH started in a garage. Wasn't last years speaker Prof. Goadsby?

Unable to progress?

Quote:

O.U.C.H. Website Ranked #1 Cluster Headache Website

A study published Nov 13, 2007 in "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors. While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.

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Re: WTF O.U.C.H. ??
Reply #30 - Jul 3^rd, 2009 at 6:27pm

catlind wrote on Jul 3^rd, 2009 at 3:30pm:

This is quoted from the OUCH Business Board on 06/08/09 at 11:02:31

Quote:

Below is a notice from the Board of Directors on the Agenda at this year's Convention. This will be the opportunity for Members participate in the planning of the future of OUCH.

Jim Welch
Treasurer
Convention Chair

Notice to OUCH Membership

The OUCH Board of Directors reminds all OUCH Members that discussions on the “Future of OUCH” will be held on Friday and Saturday at Convention 2009.

To be discussed:
Should OUCH continue to operate? OR.. How should OUCH continue to operate?

Please plan to Register and attend to voice your opinion and your suggestions.

Back ground –
OUCH has been unable to progress since its inception, and it becomes more difficult each year. Every administration has served while under attack. Some administrations lasted only months, one lasted two years. None has made any significant progress. Behind the scenes issues and online open attacks have paralyzed every administration from accomplishing anything beyond planning the next convention. There have been lots of proposals, suggestions, ideas and starts, but no completions of any consequence, save for a couple of convention grants. Every administration has been hampered by some Board members that would not perform and by individuals that would volunteer for committees or tasks then do nothing and lots of kibitzers (Those looking in from the outside throwing suggestions or complaints but not willing to get involved themselves). This unfortunately diminishes the few real efforts that have been given.

The Options -
1) OUCH could continue as in the past. (But then - who would be willing to be attacked at every effort. And is that just stalling the inevitable?)
2) OUCH could try to reorganize. (But who has the background and willingness to do it, what would be the changes and who would support the changes.)
3) OUCH could shut down. (Anyone could organize ‘Meet & Greets’ as that really seems to be the prime interest of most members.) (If OUCH folds it must then turn over its funds to another legal 501(c)(3) nonprofit organization, preferably in a like field.)

We wish all OUCH Members could participate. It is a very important subject; the conversation will undoubtedly have many twists and turns and thus, will require face-to-face sharing. We respectfully ask that this be an in-person at Convention discussion. We are planning on this being moderated to enable an orderly and a semi-formal meeting. We must agree on the outcome for OUCH by convention’s end.

I'm sorry. I have submitted my desire to volunteer, filling out the forms and all information three times over the last several years and have not had the courtesy of a simple reply from Ouch. I have donated t-shirts, cash to Ouch. At one convention, I found I could not attend at the last minute and donated my registration to Ouch so someone else could use it.

I, too, can no longer log in to Ouch. YET -

In the last two years, I have been asked twice to run for a BOD office. I really gave it thought, but decided not to run, mainly because since the general membership cannot access regular information, only info that the BOD cares to share, I felt I might be getting into something I was not able to handle, given my personal job/financial/ personal circumstances. So I politely had to decline.

I cannot attend St. Louis this year - every weekend in July is booked solid with frivolous things like my granddaughter's first birthday, my best friend's wedding where I am matron of honor, the wedding of our neighbor's son who have been friends for 25 years., and of course, this weekend, Independence Day. And, most importantly - I flat out cannot afford it.

All OUCH members SHOULD be allowed to participate in this meeting - someone figure out how to do it live time via internet. We've all been members, we've paid our dues, we participate when we can, we donate. We have no voice.

And DJ, please accept my apologies.

SandyC

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deltadarlin

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Re: WTF O.U.C.H. ??
Reply #31 - Jul 3^rd, 2009 at 7:19pm

seaworthy wrote on Jul 3^rd, 2009 at 5:41pm:

Quote:

Back ground –
OUCH has been unable to progress since its inception, and it becomes more difficult each year.

You've got to be kidding me? Unable to progress since inception?

If my history is correct OUCH started in a garage. Wasn't last years speaker Prof. Goadsby?

Unable to progress?

Quote:

O.U.C.H. Website Ranked #1 Cluster Headache Website

A study published Nov 13, 2007 in "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors. While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.

My thoughts exactly.

Sandy, I know where you are coming from, been down both roads (volunteering and never being contacted or, as in one case, turned down).

Borrowing a quote from the 2008 convention report, submitted by Mike Day, OUCH president, "The official convention activities were closed out with a reminder of the words of Professor Goadsby, “If you guys don’t get involved, nothing’s going to happen. It’s just not going to happen.”
".

Taken from the July 2008 edition of the OUCH newsletter, "I woukld like to thank our sponsor, The Linde Group, known here in the US as LifeGas......Not only have they provided funding for this past convention, but are working to help clusterheadache sufferers by sponsoring one of the most comprehensive online surveys every put together. Their organization is also working with cluster headache sufferers to develop oxygen delivery equipment better suited to our needs."

Now, I don't know about anybody else, but it seems that OUCH, and it's supporters have accomplished some pretty amazing things.

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Re: WTF O.U.C.H. ??
Reply #32 - Jul 3^rd, 2009 at 9:33pm

Many of you have pointed to short comings, and there have been many. Many of you have pointed to the successes that have occurred and there have been some. I will not try to provide explanations or excuses for short comings or try to clarify or validate the background presented in the notice.

This meeting is the legal and official Annual Meeting of OUCH, INC. Like General Motors, or AAA, or any other corporation, an annual meeting is held and those members/stockholders that can attend – do, and those that can’t attend – don’t. We are open to providing a ‘broadcast’ of sorts via the internet for all members to see – but real time to take questions and comments will most likely stagnate the meeting and block progress and we may not have enough time to allow two way communications. I do not have the technology to make this happen. So if someone that is attending has the technology – contact me and we will work it out – IF IT IS POSSIBLE.

There is a need to come to a ‘conclusion’ by the end of the convention as to the outcome and future of OUCH. THAT ‘CONCLUSION’ MIGHT BE TO OPEN AN ‘OPEN MESSAGE THREAD’ on the OUCH website FOR THE SPECIFIC PURPOSE OF CONTINUING THE DISCUSSION OF THE FUTURE OF OUCH. It doesn’t have to be – ‘Close OUCH’ or ‘Start over’ or …

Many of you have been involved with OUCH at different times. Some of you saw the good, some saw the other. But during the past few years there has been no real direction, no goals. As such, things happened; O2; Dr Goadsby attended the convention last year and other projects have occurred, yes. But these have for the most part occurred in spite of us without real direction or goals.

Let’s have a great convention that ends with a new vitality for OUCH. Isn’t it time to move on and start working on the future? Who will get involved and stay involved?

Jim Welch
Treasurer
Convention Chair
Board of Directors
convention@ouch-us.org
treasurer@ouch-us.org

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Re: WTF O.U.C.H. ??
Reply #33 - Jul 3^rd, 2009 at 9:43pm

Please, everyone respect DJ's constant reproach to everyone that he would prefer to keep this off ch.com. ch.com is NOT ouch.

Jim has given you all his e-mail addy if anyone needs or wants to give up their technology in helping others to see what is going on at the convention to discuss this via a live stream, etc. All are welcome to e-mail him with that.

Linda

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seaworthy

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Re: WTF O.U.C.H. ??
Reply #34 - Jul 3^rd, 2009 at 10:43pm

Quote:

This meeting is the legal and official Annual Meeting of OUCH, INC. Like General Motors, or AAA, or any other corporation

Except its not General Motors or AAA. Its an all volunteer organization made up of a bunch of headache sufferers and nothing more.

Get back to the roots , get off the high horse, shitcan all the lawyers that got involved, and focus on the mission statement.

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wildhaus

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Re: WTF O.U.C.H. ??
Reply #35 - Jul 5^th, 2009 at 6:41am

Linda_Howell wrote on Jul 3^rd, 2009 at 9:43pm:

Please, everyone respect DJ's constant reproach to everyone that he would prefer to keep this off ch.com. ch.com is NOT ouch.

(.......)

Linda

Linda, with all due respect, unless I have missed some thing along the way, I can’t recall DJ or Stephanie mentioning that we should avoid / refrain from discussing OUCH on CH.com, but as I say I might be wrong.......

To the point..... unless OUCH can provide us members, with a proper venue to discuss OUCH matters, the way I think under these circumstances, would be very welcome and good!
CH.com is my first choice as a communication alternative.....
I do use other alternatives..... but these are not public....

As I understand CH.com, and do correct me if I am wrong, is a (virtual) meeting place
where we all can discuss, from Cluster Headache Help and Support to Daily Chat.

OUCH is very important (for me)! and I believe for many....... I don’t see what is the
problem with us discussing OUCH on CH.com..... and I do grasp and differentiate
between CH.com and OUCH........

I can see that a discussion on ch.com could be very uncomfortable, and most likely annoying for some officials in OUCH...... and I understand it.....
but as uncomfortable as it is, a discussion is a welcome thing.... and most likely productive, it might even fruit some good ideas..... how and what to do with OUCH!

And as Cat (catlind) posted not all of us can attend the convention...... for what ever reasons...

l find it necessary and right to express my thoughts and engage in a discussion about OUCH!
Providing the discussion is carried out in a proper manner..... and with respect....... and without ego loaded personal anecdotes.....

Further..... I do not find e-mailing a proper way for discussion, and with all my respect to Jim Welch, I do feel I would like to know how the members feel about OUCH and the future of OUCH, and that can be done only on a public opened board, and not through filtered venue…. such as e-mail……

I do thank Chuck for bringing this up on the Boards….. It is a very important issue and
needs a very open and constrictive discussion…. for the good of OUCH!

Michael

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Re: WTF O.U.C.H. ??
Reply #36 - Jul 5^th, 2009 at 10:02am

Yes, he has Michael. The latest being back in Nov. 08

Quote:

Quote:
This is an OUCH business matter and it needs to be taken to the OUCH webiste. It doesn't have anything to do with ch.com and I'm tired of reading about it.

DJ

That said, DJ has just informed me that as long as it remains respectful, he will allow this discussion/venting to continue here this time.

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wildhaus CH.com Alumnus Offline Posts: 860 Wildhaus\|Switzerland Gender:	Re: WTF O.U.C.H. ?? Reply #37 - Jul 5^th, 2009 at 10:26am Linda_Howell wrote on Jul 5^th, 2009 at 10:02am: That said, DJ has just informed me that as long as it remains respectful, he will allow this discussion/venting to continue here this time. As you post linda, the key is, not only for OUCH matters..... but for any post and thread...... WITH RESPECT……. Michael
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seaworthy

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Re: WTF O.U.C.H. ??
Reply #38 - Jul 5^th, 2009 at 1:01pm

Thank you Deej.

OUCH has a management issue. Attempted to grow to large for its own boots.

From my perspective the minute OUCH starting envisioning itself a corporation such as General Motors or AAA was the minute of it's decline and ineffectiveness. OUCH hopefully has discovered that to develop and sustain that level of incorporation is unmanagable by a group of volunteers.

How many ineffective committees is OUCH attempting to manage? I dont know because like so many others I cant access the website. I would reccomend that if a committee hasn't accomplished anything in the last year then simply dismantle it. Be done with it. Focus on other areas. (Like fixing the website and responding to member requests ??)
Focua on the basics.

In the past many people stepped up to assume a title and then did nothing to support the organizations afforts. Ask them to step up or step down. Remove them if need be.

There seems to be a lot of cooks in the kitchen with grand ideas but the kitchen is stagnate because no one has anything cooking.

I suggest the next convention be held in a garage with 2-3 days of reflecting on what OUCH was intended to be. I'm pretty sure it wasn't intended to be comparable to General Motors.

Downsizing is not always a bad thing. Just heard an interesting comment regarding Sarah Pahlin. "If she wants to be President she needs to be less Northern Exposure and more C-Span".

Ouch needs to be less C-span and more "Northern Exposure"

(Modifyied due to dyslexic fingers causing spelling errors)

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Re: WTF O.U.C.H. ??
Reply #39 - Jul 5^th, 2009 at 1:33pm

To correct a flawed time line.....

seaworthy wrote on Jul 5^th, 2009 at 1:01pm:

From my perspective the minute OUCH starting envisioning itself a corporation such as General Motors or AAA was the minute of it's decline and ineffectiveness.

The events you mention below were done AFTER the org was brought in to compliance legally, not modeled after a large corporation. Part of the legal requirements is to have an annual meeting. After that, the comparisons to a bankrupt automaker are flawed.

seaworthy wrote on Jul 3^rd, 2009 at 5:41pm:

You've got to be kidding me? Unable to progress since inception?

If my history is correct OUCH started in a garage. Wasn't last years speaker Prof. Goadsby?

Unable to progress?

Quote:

O.U.C.H. Website Ranked #1 Cluster Headache Website

A study published Nov 13, 2007 in "Headache - The Journal of Head and Face Pain," entitled "An Analysis of Cluster Headache Information Provided on Internet Websites" evaluated the quality of websites providing information on cluster headache to patients and doctors. While we can't post the full text of the article here, due to copyright issues, we are proud to report that the OUCH-US website was ranked as the overall number one website for providing cluster headache information to patients and doctors.

Quote:

Ouch needs to be less C-span and more "Northern Exposure"

Even the fictional residents of Cicely, Alaska knew when to bring in an outsider to benefit the town. Then again, after watching every episode I didn't see a large healthcare concern show up offering to partner with the town to assist in the care of it's citizens.

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deltadarlin CH.com Alumnus Offline I love YaBB 1G - SP1! Posts: 3823 Downsville LA Gender:	Re: WTF O.U.C.H. ?? Reply #40 - Jul 5^th, 2009 at 3:00pm I might suggest that any OUCH members read the by-laws of OUCH to get a better understanding of the workings of said group. Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Re: WTF O.U.C.H. ??
Reply #41 - Jul 5^th, 2009 at 3:22pm

Quote:

The events you mention below were done AFTER the org was brought in to compliance legally, not modeled after a large corporation.

I didn't mention any specific events. I was refering to vision.

Quote:

After that, the comparisons to a bankrupt automaker are flawed.

The original referance to a large corporation was made by an OUCH board member. Not me.

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catlind

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Re: WTF O.U.C.H. ??
Reply #42 - Jul 5^th, 2009 at 5:40pm

Personally I think the best use of this thread will be to discover a means of allowing as many members as possible access to the discussions at the convention meetings regarding OUCH's future; Little in the way off effective good comes from comparisons, declarations of failures, and/or deeming any present or past OUCH volunteer as having done a good/bad job.

What has happened in the past is in the past; I'm fairly sure that every single person who has ever volunteered with OUCH has someone out there who can find flaws, faults and failures of each one, myself included; the past can't be changed, but it can be learned from. What is needed is constructive effective discussion on how to allow participation of the greatest numbers of members in the upcoming discussions for OUCH and it's future.

Involvement of the membership is needed; ideas for the best interest of the organization and the members who benefit from their work is needed; I do not have the ability to broadcast the meetings as I won't be in attendance. If there is anyone who will be attending the meetings, or who can provide the technology for the meetings to be attended virtually, now is the time to please step forward and volunteer.

We all know it can be done, a great number of us attended DJ and Stephanie's wedding through the technology of virtual viewing. We just need someone to be able to provide that same technology for the OUCH meetings.

Cat

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andrewjb

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Re: WTF O.U.C.H. ??
Reply #43 - Jul 5^th, 2009 at 6:20pm

Hear, hear.

.

catlind wrote on Jul 5^th, 2009 at 5:40pm:

Personally I think the best use of this thread will be to discover a means of allowing as many members as possible access to the discussions at the convention meetings regarding OUCH's future; Little in the way off effective good comes from comparisons, declarations of failures, and/or deeming any present or past OUCH volunteer as having done a good/bad job.

What has happened in the past is in the past; I'm fairly sure that every single person who has ever volunteered with OUCH has someone out there who can find flaws, faults and failures of each one, myself included; the past can't be changed, but it can be learned from. What is needed is constructive effective discussion on how to allow participation of the greatest numbers of members in the upcoming discussions for OUCH and it's future.

Involvement of the membership is needed; ideas for the best interest of the organization and the members who benefit from their work is needed; I do not have the ability to broadcast the meetings as I won't be in attendance. If there is anyone who will be attending the meetings, or who can provide the technology for the meetings to be attended virtually, now is the time to please step forward and volunteer.

We all know it can be done, a great number of us attended DJ and Stephanie's wedding through the technology of virtual viewing. We just need someone to be able to provide that same technology for the OUCH meetings.

Cat

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Re: WTF O.U.C.H. ??
Reply #44 - Jul 5^th, 2009 at 6:34pm

It has to be two-way communication, not just people who are not in attendance viewing the goings-on.

Establishing some kind of chat room, to be operated during the member meeting sessions, is the idea. I'm not sure, however, how successful the group in St. Louis would be in being able to stick to the agenda with the potential for hundreds of remote members wanting to be heard. Plus, an online chat room can only display so many responses before it scrolls past things that haven't yet been addressed.

Just some things to think about.

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andrewjb CH.com Hall of Famer Offline when the love of power becomes the power of love ! Posts: 1612 x1\|london\|England\|europe\|185\|238\| Gender:	Re: WTF O.U.C.H. ?? Reply #45 - Jul 5^th, 2009 at 6:43pm to attempt to add to the debate, the enforced ''slow downs'' could be used as breathing space, a ''resolve'' could take a while. Andrew.
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seaworthy CH.com Hall of Famer Offline Posts: 706	Re: WTF O.U.C.H. ?? Reply #46 - Jul 5^th, 2009 at 7:21pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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deltadarlin

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I love YaBB 1G - SP1!

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Re: WTF O.U.C.H. ??
Reply #47 - Jul 5^th, 2009 at 7:50pm

Webinar is good and my company has used it. It still doesn't address the issue of those not in attendance being able to view and hear the board meeting, not unless we use Skype to broadcast (which would also provide another venue for participation by members).

What will be needed in either event is one person or perhaps two or more, depending on how many people want to attend via the internet, will have to act as their *voices*.

I'm going to e-mail a friend of mine who is a *wizard* at these types of things. He's an expert with electronics.

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Brew

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Re: WTF O.U.C.H. ??
Reply #48 - Jul 5^th, 2009 at 9:28pm

I've consulted with DJ, and he has graciously offered to allow OUCH to utilize the clusterheadaches.com chat room as an alternate or backup option during the meeting in St. Louis. He figured that most members will be using Skype, like normal.

He is also looking into some options for OUCH to do some streaming via this website as well.

Thanks, Deej.

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DJ YaBB Administrator Offline Boyz Rule! Posts: 7480456 Wichita, KS Gender:	Re: WTF O.U.C.H. ?? Reply #49 - Jul 5^th, 2009 at 9:33pm I haven't tried it out, but here is another webinar option: Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or DJ
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