me again...

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Posted by Simon ( on January 05, 2000 at 21:15:45:

Itís been a little while since I put virtual pen to paper but I was provoked to thinking by a rare visit to the
MGH neurology site, where weíre currently being slated. There are clearly one or two unhappy people who
are badmouthing what goes on here.

First thing I would suggest, by all means have a look, but no matter how incensed one is, please donít post
there about it unless one is regular contributor at that site already - think how we would feel if someone
brought their battles elsewhere to

However, it does raise an issue which is very close to my heart, that of inclusivity. Thatís not to say that should be a home for any waif or stray with a pain in the head, (I absolutely agree with drummer and
all the others that the site is, and must remain, for ch sufferers only). If someone has ch, though, they must
be encouraged to stay. Any suggestion of a rival site is a nonsense - surely weíre all trying to achieve help
for each other, and the maximum possible number of sufferers here will help that, and, in the long term, put
pressure on the medical and research communities to see that we need help.

We managed again (this time with Rod) to do what we should be avoiding. Yes, he did take the wrong
approach, and maybe he is an arsehole (I donít know - especially as I donít know what went on in e-mails
off the board). I canít now check all our responses, as theyíve been deleted, but my memory is that we
immediately went on the offensive. I know some of us get very cross with what we perceive as scams, and
react accordingly, BUT, as Iíve said several times before, no matter what our personal feelings may be, we
must consider the impression we create. I have to say, it wasnít very attractive to the newcomers, of whom
there are, unfortunately, more all the time.

What is worrying is that there was little genuine encouragement for him to reveal his secret remedy. If he has
something which works for him, it MIGHT work for others. Even if it only helped one other it would have
been worth encouraging him to reveal it. That was never going to be achieved by the confrontational

Losing him, in itself, is not really the issue however. The fact that he and others can legitimately (at least in
their eyes) slam what goes on here does matter, even when they (as seems usual) hide behind a cloak of
anonymity. If I had found the MGH board first, and formed my opinions from that, I would be reluctant to
stay around here.

For those of you who ARE new, do stick around. Some of the posts may seem strange. We do contemplate
our own navels an awful lot. We do have silly conversations which out-surreal the Blessed Monty Python.
But from day to day there is little that is earth-shattering in medical terms that will help us. We try to enjoy
life as much as we can, and help others when we can. It works - nearly 35000 messages (even if 1000 of
those are about the supposed physical abnormalities of some of our number!) show that the site is doing

For those of us who have been here a while (oh, isnít it fun being chronic?), rather than putting people off,
letís encourage them to visit and stay. We get very focused on the message board. I visited the guestbook
for the first time in ages the other day, and was amazed to see messages from hundreds of people whoíve
never been near the board. I saw about eight in one month from the UK, and e-mailed to suggest they drop
in here. Perhaps we could all do that to those in our local area - it helps. But if the first thing they see when
they pop in is ď***** YOU *****Ē, are they going to come back?

A final thought - is it likely that Rodís posts would have had to be deleted were they just politely commented
upon, or ignored? I think not. Do we help ourselves when we have to censor things? Again, no - we just
play into the hands of those who want to be able to claim we are cliquish and unwilling to accept another
view. This site is for clusterheads whether we like them or not!


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