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Topic: OUCH (UK) (Read 7415 times) |
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Chuffy
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Re: OUCH (UK)
« Reply #100 on: Dec 27th, 2005, 1:19pm » |
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A big pisser for me, and a few other people no doubt, is that buying one of Ben's masks was on my New Year 'to do' list, thanks for that OUCH (UK) 
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www.site full of PF idiots.com
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dennisoc
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Posts: 72
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Re: OUCH (UK)
« Reply #101 on: Jan 9th, 2006, 1:36pm » |
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bump
Let noone be without full knowledge and access to all Cluster treatments.
den
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Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
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Re: OUCH (UK)
« Reply #102 on: Jan 11th, 2006, 7:02am » |
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Can we move on from ranting?
I've stayed away till I learnt more - and do think there's a middle ground now.
Nothing's perfect. Ouch UK said it could have handled the mask business better, but rather than these people being the spawn of Satan they're mostly overworked volunteers and sufferers simply motivated to help fellow CH sufferers.
I've posted about my success with alternatives on the board - and (some of) the posts are still there. The new message board still has alternatives listed (of the seeds variety) and even a post on Albert Hoffman's big birthday which referenced Andrew Sewell's work on CH @ Harvard with LSD and psilocybin.
Thing is before Xmas when their board last fell over the alternative remedy section (seeds) had more views by an order of magnitude than just about any other section.
As long as I'm posting there the information will get out to UK sufferers to make their own minds up. Of course I'd like to see links to the clusterbusters website on there now - but if this Harvard stuff gains traction and Peter Goadsby gets more enthusiatic on record it's getting more likely to happen.
As long as Clusterbusters keeps its No 1 Google ranking as the alternative CH therapy - people will find it. I did.
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| « Last Edit: Jan 11th, 2006, 9:08am by Beastfodder » |
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O2 and clusterbusters - naturally
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vig
CH.com Alumnus
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CHit Happens
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Re: OUCH (UK)
« Reply #103 on: Jan 11th, 2006, 10:12am » |
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good work to all!
keep fighting the good fight.
everyone will benefit from the free flow of information.
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never, Never, NEVER quit. -Winston Churchill
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SteveY
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Pain is a state of mind, my mind says it F** Hurts
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Re: OUCH (UK)
« Reply #104 on: Jan 11th, 2006, 11:05am » |
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Free flow of information is exactly what we are NOT getting on OUCH UK.
You wouldn't believe it.
Steve
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Roxy
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Re: OUCH (UK)
« Reply #105 on: Jan 11th, 2006, 11:47am » |
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It seems that ranting and raving and trying to make changes in OUCH UK doesn't work.....why don't the members that aren't happy just LEAVE!
Join OUCH US. We can sure use some active members. Show your displeasure by deserting in droves.
Start an underground email campaign, actively encourage members to withdraw their memberships and join an OUCH site which welcomes any and all participation......and allows discussion about all topics which might remotely help this condition.
Just my stupid thoughts on the matter.
Roxy
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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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Beastfodder
New Board Old Timer
O2 and clusterbusters - naturally
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Re: OUCH (UK)
« Reply #106 on: Jan 11th, 2006, 3:55pm » |
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on Jan 11th, 2006, 11:05am, SteveY wrote:Free flow of information is exactly what we are NOT getting on OUCH UK.
You wouldn't believe it.
Steve |
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I think every poor sod who's suffered with these threads knows this by now.
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O2 and clusterbusters - naturally
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Flash
Guest
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FYI - I am no longer a member of Clusterbusters as I would not like my outspoken criticism of OUCH (UK) to reflect badly on that organisation.
***
The BOT OUCH UK will be delighted to note that this is my last post on this (or any CH related) subject. You win Mo! Keep up the good work 
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This is how the situation has concluded:
OUCH (UK) has issued a statement this time prohibiting all talk of LSA, RC seeds, HWB seeds, and MG seeds in addition to mushrooms and LSD.
They also (inadvertantly) acknowledged that 1/3rd of their membership do not have Internet access.
The have stated that if 50 people were to compile detailed DAILY diaries of their LSA usage over a 3 year period, then they'd pass these on to Goadsby to review, and depending on the outcome they might change their minds and support this treatment. LMAO.
Where do they expect to get 50 people with LSA experience from, when nobody is permitted to mention LSA???
They have repeated their trick of sending a letter to the Home Office, and posting the reply along with their interpretation of that reply, yet ommitting the original letter.
They've done likewise with reference to MS charities, although it should be noted that cannabis is now a legal a prescribed drug for MS in the UK... thanks mainly to MS campaingers, so that statement is somewhat null and void.
You may also be interested to know that OUCH UK had 1600 members. Given that a third of them do not have Internet access then that's AT LEAST 500 PEOPLE THAT OUCH UK IS WITHOLDING INFORMATION ON A PROMISING TREATMENT FROM. What if one (or more) of those 500 people were to take their own life?
Word on the street is that their next step will be to ban all proponents of this treatment from their membership.
So, back to square one.
To reiterate (just one last time), my personal issues with this are:
1) The BOT at OUCH UK are self appointed, and there is no means of deselecting them unless they choose to resign. There are no elections.
2) OUCH UK pertains to be the official mouthpiece for CH in the UK. Yet they do nothing to support this promising treatment, and if anything they appear to do everything to undermine it.
3) They have banned their own members.
4) As has been demonstrated, there is no legal issue whatsoever with discussing this treatment on an Internet forum. This is a matter of fact not a matter of opinion.
5) As has also been previously demonstrated, charities in the UK already exist to promote the use of illegal drugs, and to campaign for changes in the law. Campaigning for research on these substances, would not risk OUCH UK's charitable status. That is also a matter of fact not a matter of opinion.
Now, to all you lurkers from the UK, who contact me by phone, email, or PM... it's time to stand up and be counted. I refuse to do this anymore. Fight your own battles.
DJ - please delete my account like I previously PM'd asking you to. I really mean it. I have nothing constructive left to offer the world of cluster headaches. Thank You.
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| « Last Edit: Jan 19th, 2006, 2:27pm by Flash » |
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Peppermint
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Work it out baby!
 
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Re: OUCH (UK)
« Reply #108 on: Jan 19th, 2006, 2:41pm » |
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Flash -
on Jan 19th, 2006, 2:25pm, Flash wrote:| DJ - please delete my account like I previously PM'd asking you to. I really mean it. I have nothing constructive left to offer the world of cluster headaches. Thank You. |
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I will digress from your statement just to say this: You have put a lot of informational posts on the board. Asking DJ to delete your account will make it hard for those who are interested in your posts and findings, and cannot find their voice to express it as many do not, to access your posts.
If you want to leave, then so be it, but to pull the rug out from all those that believe in or are interested to know your methods.....
look in your heart and think that one over.
PFDAN's to all,
Pep
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You like apples? How ya like them apples?
When playing in the gym, beware of steel beams. - M. Amyx
Carve your name on hearts, and not on marble. - Charles H. Spurgeon
FYI - I am NOT a clusterhead.
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Bob P
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Shut up Bob!
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Re: OUCH (UK)
« Reply #109 on: Jan 19th, 2006, 3:06pm » |
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Flash - just click on "Profile" at the top of the page, scroll to the bottom of your profile page and click on "delete user".
It's good to do for oneself.
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| « Last Edit: Jan 19th, 2006, 3:06pm 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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nani
CH.com Alumnus
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Re: OUCH (UK)
« Reply #110 on: Jan 19th, 2006, 7:56pm » |
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I'm with Patti, Flash. Stick around so those who need your knowledge can get it.
Onward and upward...
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Others may come and go, but MY power is MINE.
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Sandy_C
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Burn that bra!
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Re: OUCH (UK)
« Reply #111 on: Jan 19th, 2006, 8:24pm » |
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Flash, I don't give a rats a$$ what OUCH UK says or does. All I know is that you have given me so much great information that is helping right now, this very minute. I've dosed with rc seeds trying to ward off a cycle, as you said it might help. Well, Goddamnit! It's working. Since you've helped me, I think you need to stick around so that others can be helped too.
Just my 
And that's four, just in case you can't count.
Sandy
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Lean on me when you're not strong
And I'll be your friend
I'll help you carry on
For it won't be long
Till I'm gonna need
Somebody to lean on
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fubar
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Re: OUCH (UK)
« Reply #112 on: Mar 14th, 2006, 7:56pm » |
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I'm just bumping this to:
1) find out if anything has changed wrt OUCH UK
2) to irritate those who would keep it the same as in the past
any news?
-Shawn
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Linda_Howell
CH.com Alumnus
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Re: OUCH (UK)
« Reply #113 on: Mar 14th, 2006, 8:20pm » |
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I'm waiting to see if anyone can answer Roxys question above.
I thought it was a good one.
Linda
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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Jonny
CH.com Alumnus
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Re: OUCH (UK)
« Reply #114 on: Mar 14th, 2006, 8:31pm » |
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Just a waste of bandwith rehashing this!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
- Guiseppi
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fubar
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Re: OUCH (UK)
« Reply #115 on: Mar 14th, 2006, 8:44pm » |
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No offense Jonny, but I worry about our brothers and sisters in the UK that are subjected to to this kind of righteous information denial that OUCH (UK) perpetrates on them. They suffer as much as we do, they *are* worth talking about, and if anybody should be bitching about it, we should. That's my opinion, and luckily I am free to express it here. And bandwidth never gets 'wasted' in the process anyway. People here are free to read it or not. In my opinion, this topic is WAY more relevant to CH than other things we talk about here.
-Shawn
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"He who has a why to live for can bear almost any how." -- Friedrich Nietzsche
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Lizzie2
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Re: OUCH (UK)
« Reply #116 on: Mar 14th, 2006, 8:52pm » |
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As far as I know, people had been able to talk about things a lot more openly on OUCH UK, but I haven't been on the site in awhile. I know there were some active threads when I was there before about alternatives, though.
Carrie
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MJ
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Re: OUCH (UK)
« Reply #117 on: Mar 14th, 2006, 8:59pm » |
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on Mar 14th, 2006, 8:44pm, fubar wrote: People here are free to read it or not. In my opinion, this topic is WAY more relevant to CH than other things we talk about here.
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Amen Fubar.
Seems to me that more understanding and knowledge has come out of threads like this than many others.
Some see them as counterproductive but I find them otherwise.
Miss ya Flash and appreciated your knowledge in the past.
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MJ
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