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Posted by Simon ( on October 29, 2000 at 04:15:46:

Hello everybody - if you've been missing me (fat chance!) I've been on a very soggy half-term holiday to Scotland. Back in the warm now.

As you may know, one of the problems over here (UK) is that we may be able to get oxygen prescribed, but normally cannot get the high-flow regulators we need. I contacted British Oxygen a while back on behalf of OUCH, to see if tehy would sponsor us in providing some. People could then try them out to see if O2 worked before purchasing them themselves.

When I got back from holiday I had an e-mail saying they could give us TEN of them - cost to BOC around 1100 ($1500?) - which is brilliant and extremely generous.

However they asked me how many belonged to our organisation, and now I feel embarrassed. I just checked the OUCH list and there are 110 of us. Why so few?

We keep asking for new members, and from the hundreds who post here in an average month, an enormous percentage are not "in the club". Is it because you don't see any benefits? We're working on it - but we need the support of numbers to be truly effective.

Is it because you can't afford it? $25 is not a lot to most, but if the need is genuine, there are always people who will help - post on the board, or if you're embarrassed to do that, get in touch with one of the officers or board members, and we'll see what we can do.

Questions are asked here occasionally about funding/supporting research. That is an aim of OUCH but to do it we need members. A lot of research is being done, and we need an organisation to be the contact point. A website, whether this one, HSG, UKCH or any of the others, no matter how good, is really a talking shop rather than a campaigning group.

I am informed by Goadsby's team at Queen's Square that the number of sufferers is comparable to those who have MS. Do we think that awareness of that condition is as high as it is because the sufferers sat down and wrote to, or whatever? I doubt it very much.

Come on folks - think. If you don't like OUCH for some reason, get in there and make it do what you want. The organisation is there for me, you, the medical profession and everyone affected by ch. (Remember there are doctors out there who are just as frustrated with things as we are - but why should they bother if 99% of us don't. There are 1646 people listed on's "where we live" page. We're less than 7% of that at the moment - and not everyone who visits has put their location up!)

But whatever you do, don't just leave it, otherwise the chances we're trying to create will simpy evaporate and we'll be back at square one.


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