Posted by MOB (62.252.224.4) on August 27, 2001 at 07:47:31:
OUCH (UK) was formed by six people who were sick of the treatment that Cluster sufferers were receiving in the UK.
This feeling started on the Ukch website and then grew into a purpose at a meeting in Rugby. Hearing all those
people saying the same things about lack of support from the medical profession etc, basically made us angry.
So we decided to do something about it, some provided recourses. some time and energy but all provided total commitment, and thus OUCH (UK) was born.
We have very good relations with the Migraine Action Association because we wanted it that way.
What are a lot of CH'ers misdiagnosed with ?? "Migraines" !!
So where would be a good place to start looking for poor lost CH'ers ?? Migraine Groups etc.
I was a member of Migraine Action many, many years ago before Ch.com and OUCH were even thought of. They were the only people that were doing
anything over here to try and help CH'ers. Another trustee "Susi" is still a member, and why not they helped her first.
Simon approached them about helping each other (as long as we were not stepping on each others toes) and they gladly agreed.
You see, they had a group a CH'ers that they had been kindly trying to help for some years, funny that !!
They offered us any kind of help that we wanted, resources, office space, etc, etc, etc, and they also allowed us to hijack their
annual CLUSTER HEADACHE meeting in London. This we then used as a platform to launch OUCH (UK) the charity.
You see they cared about their CH'ers and wanted what was best for them. So they gladly pointed their CH'ers in our direction
because they knew we could and would help them. That is what OUCH is about in any country.
People with Migraines are not the enemy, Migraine Organisations are not the enemy, the Medical Profession IS !!.
If you kindly send any lost Migrainers to a Migraine site, it stands to reason that any poor lost CH'ers on a Migraine site
will be directed towards the people who can help them the best, OUCH - whatever org.
I did not really want to get involved in this but felt that the issue of OUCH (UK) and Migraine Action Association needed clarification.
But I do find myself agreeing with some of Dave H's points. If you sit back and think about it, Migraine sites have achieved what
we "OUCH" want to achieve. So would it not stand to reason that we can learn from them and how they accomplished what they have.
I am a member of OUCH (UK), I am a Trustee of OUCH (UK), I am a member of OUCH as are other Trustee's of OUCH (UK). I will also
be a member of VCH-OUCH (When I send Eberhard the check eventually - sorry Bro :) and. I will join any other OUCH charity the forms
anywhere in the world. Because quite frankly, we need all the help we can get - whatever the source.
This was supposed to be a clarification but looks like it turned into a novel :) - sorry.
Best Wishes,
Michael (MOB)
NB: I must state that these are my personal views and do not necessarily reflect the views of OUCH (UK)