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Title: Very Good News from O.U.C.H. Post by Batch on Sep 23rd, 2007, 8:56am On behalf of President and the Board of Directors of O.U.C.H. USA, we are pleased to announce that Dr. Todd Rozen, MD, Director of Outpatient Services, Headache Division, at the Michigan Headache & Neurological Institute, Ann Arbor, MI, has agreed to be the Chief Medical Advisor for an O.U.C.H. USA initiative to conduct an international study of Very High Flow Rate Oxygen Therapy for Cluster Headaches. This study, initiated by the O2 User’s Support Team, will be conducted in regulated clinical environments in order to shape the future of cluster headache abortive therapy. More to follow… V/R, Batch |
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Title: Re: Very Good News from O.U.C.H. Post by UN solved on Sep 23rd, 2007, 9:02am Dr. Rozen is a great doc ! I haven't seen him for awhile. I may be calling him again soon. BTW, I thought he already did a study on high flow 02 for CH [smiley=huh.gif]... I Know he published some writing about it. UNsolved |
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Title: Re: Very Good News from O.U.C.H. Post by barry_sword on Sep 23rd, 2007, 9:03am [smiley=thumbsup.gif] [smiley=thumbsup.gif] That is very good news Batch. Barry |
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Title: Re: Very Good News from O.U.C.H. Post by DennisM1045 on Sep 23rd, 2007, 9:36am This is awesome news Batch! Keep up the good work. You guys are amazing. -Dennis- |
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Title: Re: Very Good News from O.U.C.H. Post by JenniferD on Sep 23rd, 2007, 9:40am Awesome news Pete! :D |
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Title: Re: Very Good News from O.U.C.H. Post by chewy on Sep 23rd, 2007, 10:18am http://www.mhni.com/faqs_high_oxygen.aspx#oxygen |
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Title: Re: Very Good News from O.U.C.H. Post by DennisM1045 on Sep 23rd, 2007, 10:31am on 09/23/07 at 09:02:55, UN solved wrote:
He did. This is a new study at rates higher than 15lpm. I'll let Pete follow up with more details. -Dennis- |
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Title: Re: Very Good News from O.U.C.H. Post by nani on Sep 23rd, 2007, 10:33am I'm looking forward to seeing the protocol, and particulars. Didn't Peter Goadsby just complete a clinical trial on high flow O2? |
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Title: Re: Very Good News from O.U.C.H. Post by kayarr on Sep 23rd, 2007, 12:18pm on 09/23/07 at 10:18:21, chewy wrote:
do you know of any oxygen saturation numbers taken at the time of a headache pre-oxygen therapy? |
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Title: Re: Very Good News from O.U.C.H. Post by sandie99 on Sep 23rd, 2007, 12:50pm Great news! |
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Title: Re: Very Good News from O.U.C.H. Post by DonnaH on Sep 23rd, 2007, 1:21pm Were'nt some of our own clusterheads here on the mb (years ago) the first to suggest using oxygen in the first place? If I remember correctly ( and am probably wrong, but) WE introduced this idea at our convention and the doctor speakers took it from there. |
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Title: Re: Very Good News from O.U.C.H. Post by Brewcrew on Sep 23rd, 2007, 2:19pm Was there an announcement similar to this on the OUCH board? If there was, I missed it. |
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Title: Re: Very Good News from O.U.C.H. Post by chewy on Sep 23rd, 2007, 2:41pm on 09/23/07 at 14:19:52, Brewcrew wrote:
LMAO! Your kidding right? Quote:
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Title: Re: Very Good News from O.U.C.H. Post by Rosybabe on Sep 23rd, 2007, 3:37pm Great, great just great! 8) |
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Title: Re: Very Good News from O.U.C.H. Post by Batch on Sep 23rd, 2007, 6:53pm Hey All, There's a lot more good news coming... It's just going to take a bit, and no, I've not posted the original announcement on the O.U.C.H. board as yet... had to catch a flight. I should have that posted by tonight. For now... go ahead and shoot the messenger. Thanks to a few of you for the keen eyes and corporate memory in pointing out links to Dr. Rozen's and Dr. Goadsbey's previous work on High Flow Oxygen Therapy. In the words from Strother Martin from the 1967 classic, Cool Hand Luke. “What we have here… is failure… to communicate.” Please note the title of our international clinical study, and in particular, the operable word “Very.” More to follow… Take Care, V/R, Batch |
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Title: Re: Very Good News from O.U.C.H. Post by Ree on Sep 23rd, 2007, 7:36pm on 09/23/07 at 13:21:17, DonnaH wrote:
That would not surprise me Donna...We have taught the Neurologists alot about CH... weren't we told in NY that they only study 5 hours on Ch in the course of their study to become Neurologists...Daves Neuro asks him all kinds of questions and gives Dave whatever he wants. He also takes notes and I'm sure uses what he learns from Dave and other patients to use in the future. We are so fortunate to find Dr Andre since we lost our beloved Dr Dewitt to Utah a few years back. She was awesome. Ree |
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Title: Re: Very Good News from O.U.C.H. Post by ClusterChuck on Sep 24th, 2007, 3:37am on 09/23/07 at 08:56:20, Batch wrote:
Please notice this is VERY high flow rate ... And who better to run this study, than the one who ran the High Flow Rate study? I think this is a VERY impressive step forward for O.U.C.H. Hats off to the team! Congratulations! Chuck |
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Title: Re: Very Good News from O.U.C.H. Post by sandie99 on Sep 24th, 2007, 6:36am As soon as you guys have some new information which can be openly shared, I'd love to share it with our fellow sufferers here in Finland. Finland's Migraine Assosiation - which clusterheads are part if in here - is pretty useless what comes to sharing any information about ch. They did publish a new leaflet this year, but its 02 info recommends just 7-10 lpm. I have the contact information of the neuro who did that leaflet, so when something can be shared, let me know. That neuro seems to be quite open to new studies, so I'm sure that this study and the results in particular would interest him. After all, he did recommend 7-10 lpm based on clinical research results. I do think that other Finns should be informed more about O2; it's common knowledge in this site that O2 users should use 15lpm at least, but I bet that its not known here in Finland. I didn't get O2 myself, because "the best HA neuro in town" doesn't believe that it helps... Sanna |
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Title: Re: Very Good News from O.U.C.H. Post by purpleydog on Sep 24th, 2007, 8:08am on 09/23/07 at 18:53:53, Batch wrote:
I would think this would have been posted on the OUCH board first, along with more pertinent information, before any mention was made on CH.com. You know, so people could have their questions answered from the appropriate website. |
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Title: Re: Very Good News from O.U.C.H. Post by UN solved on Sep 24th, 2007, 11:20am The info (and any other ouch info) needs to be posted here where people will actually see it. No one goes to the ouch boards. Sorry, but it's a dead board. I once posted a question there and I don't think it's been answered yet !! As Don pointed out ... board last updated 3/25/2007 UNsolved |
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Title: Re: Very Good News from O.U.C.H. Post by aloneuk on Sep 24th, 2007, 11:44am [smiley=thumbsup.gif] [smiley=thumbsup.gif] |
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Title: Re: Very Good News from O.U.C.H. Post by Guiseppi on Sep 24th, 2007, 1:14pm Awesome work Batch......but then it's what we've come to expect from you! Guiseppi |
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Title: Re: Very Good News from O.U.C.H. Post by wildhaus on Sep 24th, 2007, 3:16pm I would like to add for all some things: The effort is an effort to help CH’ers, OUCH member or not….!!! We (pete and myself) decided to post the announcement on CH.com to reach a large audience quicker. You can only imagine how excited we were to share the good news and the progress of all our hard work in this forum We appreciate your criticism as to the nature and the manner in which we (Pete and my self) have posted this announcement... and perhaps you are correct... In the future we will refrain from making such announcements in this forum and Use the O.U.C.H board as the method and place for such. And provide you with the appropriate link to the O.U.C.H. board on CH.com. If you do have any questions or comments about this efforts, or any other matter concerning o2 please use this link http://www.ouch-us.org/medications/oxygen/o2info.shtml There you will find an: O2 User’s Support Team Question & Feedback Form. I assure you that all comments will be read and all questions will be answered. We take our mission very seriously and believe we are out there to help any one with CH! Be it a simple question about o2 use or an inquiry about equipment, or funding for research. We do this for the benefit of CH sufferers. Michael |
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Title: Re: Very Good News from O.U.C.H. Post by chewy on Sep 24th, 2007, 4:00pm Good to see that there are at least two BOD members who are not asleep at the wheel. |
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Title: Re: Very Good News from O.U.C.H. Post by Jimi on Sep 24th, 2007, 4:18pm We very much appreciate all the work that you and Batch have put into this. I am proud of you both. |
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Title: Re: Very Good News from O.U.C.H. Post by Guiseppi on Sep 24th, 2007, 4:33pm I know Linda has gotten angry with me in the past for going off...so I will remain civil. ;;DBut I gotta tell you, I'm looking at hundreds of hours....of volunteer work....from some very dedicated, hard working, decent people...with absolutely nothing to gain.....so when I see ANY sort of political responses as to which board they should "properly announce" the fruition of all of this hard work............well the vast majority of my responses are what Linda would refer to as "most uncivil." So in keeping with my new policy of not "going off" I won't suggest any of you perform the solo carnal act that springs to my mind ::).........but until any of you put forth the work Batch has......well refrain from posting as I doubt very many people are interested in your negative comments. Just Guiseppi's 2 cents worth... ;;D |
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Title: Re: Very Good News from O.U.C.H. Post by Jimi on Sep 24th, 2007, 6:15pm Give'em hell Sarge. Just keep the taser on your belt. I know how you like to use that thing. ;) |
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Title: Re: Very Good News from O.U.C.H. Post by purpleydog on Sep 24th, 2007, 6:25pm on 09/24/07 at 16:33:34, Guiseppi wrote:
Well, I won't suggest you get your head out of your ass, until you are more familiar with the past and present BoD of OUCH. Just my [smiley=twocents.gif] |
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Title: Re: Very Good News from O.U.C.H. Post by kcopelin on Sep 24th, 2007, 6:29pm Can't wait for more info....wondering how high VERY high is-maybe that's why O2 stopped working for me-and others-stopped at 15....O2 saturation is a concern-I thinnk back on the battle I had with the VA to get O2-they made me listen to a safety briefing ::) and then they still delivered a little bitty regulator-no prob-clustermask and e-bay to the rescue....can only imagine what they would say to going higher. Batch, Tony, Mike, thank you from one whose life was changed by this board and by OUCH. Good on y'all, we need a kick butt BoD! PFDAN y'all, kathy P.S. Ummm, Joe, if y'all are gonna use the taser, try to avoid video cams okay. |
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Title: Re: Very Good News from O.U.C.H. Post by BMoneeTheMoneeMan on Sep 24th, 2007, 8:23pm on 09/24/07 at 18:29:17, kcopelin wrote:
Not trying to hijack the thread, but, Kathy, earlier this year O2 stopped working for me also at 15lpm with a clustermasx. I boosted my set up and now I use up to 30lpm. It works much better for me now. Much more effective and more rapid relief. Unfortunately, I dont know about O2 saturation. I hope that will be researched also. PF to ya! B$ |
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Title: Re: Very Good News from O.U.C.H. Post by Not4Hire on Sep 24th, 2007, 8:54pm Quote:
8) |
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Title: Re: Very Good News from O.U.C.H. Post by Batch on Sep 25th, 2007, 5:05am Per Michael's note, I have posted an update to this exciting thread on the O.U.C.H board in the O2 Committee section at the following url: http://www.ouch-us.org/members/cgi-bin/yabb/YaBB.cgi?num=1190728561/0#1 Take care, V/R, Batch |
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Title: Re: Very Good News from O.U.C.H. Post by catlind on Sep 25th, 2007, 7:43am on 09/23/07 at 12:18:15, kayarr wrote:
Mine's been checked, not as part of a study, but because the nurses couldn't understand why I needed O2 - my sats were 98% about 5 min. into the attack. Cat |
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Title: Re: Very Good News from O.U.C.H. Post by Brewcrew on Sep 25th, 2007, 7:45am on 09/25/07 at 05:05:20, Batch wrote:
Thanks, Pete! But when I click on your link I get the message "You are not allowed to access this section." Hmmmm.... |
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Title: Re: Very Good News from O.U.C.H. Post by pattik on Sep 25th, 2007, 8:19am on 09/25/07 at 07:45:16, Brewcrew wrote:
The only board on the OUCH site that doesn't require special "permission" to enter is the volunteer lounge, news, and special election boards. Everything is on a need-to-know basis. That's why most of us won't be able to access Pete's information. Patti |
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Title: Re: Very Good News from O.U.C.H. Post by chewy on Sep 25th, 2007, 9:52am Quote:
Thats correct and OUCH members have no need to know anything. Batch, can you have the webmaster at OUCH put it in maybe the clinical trials section. Then it will be accessable. |
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Title: Re: Very Good News from O.U.C.H. Post by Batch on Sep 25th, 2007, 10:02am Ooops.... IFU. Bad bulbs and not enough sleep. Please try the link again... Y'all take care V/R, Batch |
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Title: Re: Very Good News from O.U.C.H. Post by Linda_Howell on Sep 25th, 2007, 1:13pm Quote:
and YOU were a part of that past, so what are you saying that you did a bad job when YOU were there? ::) Telling Guiseppi to get his head out of his ass was totally uncalled for, disrespectful and rude beyond belief. He has always been the most gentle and supportive person to everyone here. His comment about the 02 study showed his class and his character. |
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Title: Re: Very Good News from O.U.C.H. Post by purpleydog on Sep 25th, 2007, 7:26pm on 09/25/07 at 13:13:59, Linda_Howell wrote:
Exactly, Linda, i was part of that past, and Guisseppi obviously didn't take time to note that fact. From his post, I understood him to mean that no one should have an opinion about OUCH, and how they do things unless they have worked as hard as Batch. Well, you know exactly how hard we worked when I was there, and I am perfectly entitled to my opinion in this case, according to Joe. Also, thank you for your opinion on my post being rude. I also thought Joe's post saying Quote:
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Title: Re: Very Good News from O.U.C.H. Post by cathip on Sep 25th, 2007, 7:49pm No good deed goes unpunished...... For the love of Uriah, gang, you ask and ask, demand, wheedle and puff up about "getting nothing from OUCH"....and now, you HAVE something, yet you gripe and criticize....and, yes, you served....and you hated it, so you left... could this be why? Grumpy, grouchy, self-righteous, know-it-all people...........and YES, I have been here long enough to know that a position on the BOD of OUCH is kinda like putting your head in the stockade- unavoidable torture......from the swearing, swirling masses with bared teeth, watching and waiting in Clusterville. Now,let's back the truck up, take a look at this news, and KNOW that this is a step in the right direction.... thank you, Batch, for the news......... and Guiseppi didn't start it, Chris......go back and read..... One small step for Clusterville, one GIANT leap for gangfighting.. Cathi |
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Title: Re: Very Good News from O.U.C.H. Post by Jonny on Sep 25th, 2007, 7:52pm on 09/24/07 at 18:15:39, Jimi wrote:
http://www.tshirthell.com/shirts/products/a992/a992_bm.gif .....;;D |
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Title: Re: Very Good News from O.U.C.H. Post by Kevin_M on Sep 25th, 2007, 9:20pm on 09/25/07 at 19:49:51, cathip wrote:
Cath, I don't think Batch's post was a message griped about or criticized. Quote:
Also, I know that probably no one here has worked customer relations for a highly inept airline like I did 40 hours a week but any pressure I've seen leveled at OUCH was stuff knocked off while eating lunch. The frame of mind reflected in the above statements wasn't business. There are solutions. Quote:
Yes, thanks. :) Quote:
Opinions with OUCH are ok and definitely not gangfighting. |
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Title: Re: Very Good News from O.U.C.H. Post by purpleydog on Sep 25th, 2007, 9:28pm on 09/25/07 at 19:49:51, cathip wrote:
Who are you talking about here? I'd be interested in knowing. People have left OUCH since it's inception for various reasons. But I don't recall anyone who hated it, unless a former BoD told you that in confidence, and you've posted it here. |
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Title: Re: Very Good News from O.U.C.H. Post by Batch on Sep 26th, 2007, 3:36am Hey All, As the O.U.C.H. US spokesperson, nothing would give me greater pleasure than to tell you about everything we’ve accomplished, what is in work, and what we are planning. We understand the need for transparency in keeping members informed, but at this point, with respect to most of these very important opportunities, that’s not an option. What I can say is we’ve taken the first few steps on a journey that will benefit cluster headache sufferers around the world. In a sense, we’ve built a better mousetrap, and now we need to take it to market. That is a disciplined business process that by necessity must be held close. For now, know that the Officers and Board of Directors of O.U.C.H. are working hard in several areas on the behalf of cluster headache sufferers everywhere. That is our mission and vision. When the time is right, we’ll start laying cards on the table. Until then, it’s hold’em. We cannot jeopardize some very important opportunities that will benefit so many just to satisfy the curiosity of a few. Please trust me when I say this will be well worth the wait. For you folks having problems aborting your cluster headache attacks with oxygen therapy, Michael posted the link to the O.U.C.H. O2 User’s Support Team. I’ve posted that link below. http://www.ouch-us.org/medications/oxygen/o2info.shtml We also have a link that you can use to send us your questions and comments, so I’ve posted that link as well. http://www.ouch-us.org/medications/oxygen/o2comment.htm Alternatively, you can email us directly with your questions at the following email address: o2help@ouch-us.org To my knowledge, we’ve responded to every question and comment sent using this link. If you’re having problems aborting your cluster headache attacks with oxygen therapy, please use this link to let us know about your problem. Michael and I take our responsibilities as Co-Chairman of the O2 User’s Support Team seriously and we will make every effort to provide you the best information possible in private, so you can discuss it with your doctor, and hopefully solve your problem. For those of you concerned about the effects of oxygen saturation, please consider the following. "Do No Harm" is foremost in our thoughts and actions. U.S. Navy and Marine Corps pilots have been breathing 100% oxygen for over 60 years on all missions from takeoff to touchdown. These missions frequently last two hours or more in duration, and many times during these missions, they consume 100% oxygen at very high flow rates. This is an important fact that cannot be overlooked. It takes over 18 months of flight training costing more that $1.5 million dollars to qualify as a Naval Aviator and earn the wings of gold. It can take another 12 to 18 months of additional flight training to qualify them to fly aircraft like the F/A-18 costing well over $30 million dollars, on and off an aircraft carrier. During all this flight training, the Navy requires them to breathe 100% oxygen. Ask yourself, why would the Navy make an investment like this while knowingly risking lives and equipment if 100% oxygen was a health hazard? Accordingly, we see the risk-reward aspect of oxygen therapy for cluster headaches strongly favoring reward while minimizing risk. As a matter of procedure, Navy and Marine Corps pilots routinely man their aircraft and strap on their oxygen masks 10 to 15 minutes prior to start engines for a night flight. They do this in order to pre-oxygenate (read saturate) to improve their night vision. So… long answer made short, oxygen saturation at 1 atmosphere pressure (1 ATA) is not an issue or a health risk as long as you have healthy heart, lung, liver, and kidney functions. See your doctor for details. If you’re still interested and want additional information on this topic, please go to the following URL on the O.U.C.H. O2 User’s Support Team web page. http://www.ouch-us.org/medications/oxygen/o2links.htm You’ll find the Supplemental Guide To Using O2 and an Information Paper on the same topic along with other useful information on O2 therapy. The Supplemental Guide and Information Paper also include sections on the side effects and risks associated with breathing 100 % O2. Finally, the protocol we’re developing is not approved for use and it’s now under Dr. Rozen’s control, so it would be inappropriate to discuss it in an open forum at this time. In addition, Dr. Goadsby’s recent studies have been focused on the risks of arrhythmias while taking verapamil, as well as the benefits of triptans and high-dose oxygen therapy at 12 LPM as a cluster headache abortive. It just keeps getting better, and there will be more to follow on a number of exciting initiatives... Take care, V/R, Batch |
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Title: Re: Very Good News from O.U.C.H. Post by cathip on Sep 26th, 2007, 8:08am Chris, Were you not a BOD member?? Did you not leave before your term was over? I am not privy to anything that goes on at the OUCH BOD, nor do I choose to entertain gossip. If your hackles are up, that's your problem. I still say, Guiseppi did not instigate that attack, nor did he deserve your response. Cathi |
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Title: Re: Very Good News from O.U.C.H. Post by purpleydog on Sep 26th, 2007, 12:01pm on 09/26/07 at 08:08:05, cathip wrote:
Why yes Cathi, I WAS an officer of OUCH. And no, I did not leave before my term was over. Where did you get that info? And as I posted previously, my response was my opinion, and I found Joe's response distasteful, to say the least. And you have your opinion. That's your problem. |
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Title: Re: Very Good News from O.U.C.H. Post by ClusterChuck on Sep 27th, 2007, 1:13pm All the bickering and bullshit aside (I refuse to add or reply to any of it), GREAT WORK Pete and Michael! Ya done good! Keep up the good work. All clusterheads may be singing your praise! Chuck |
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