X posted @ Sarcinfo

[Guest guest]

Open Letter - Please read, respect and move on!

This was posted by Gwydion on Trevors forum to once and for all STOP

the crap from being posted here, there, everywhere and privately

about everything to do with us and them. This includes us and them.

Please respect it. None of us need anymore stress.

Thank you.

Aisha.

______

This is an open letter addressed to Trevor and to all of you who've

seen fit to join the Neurosarcoidosis Support Group hosted by

Elderwyn.com - you know who you are.

Many of the people from this forum who've joined our group have gone

to great lengths both publicly and privately to promote their view

that all the research here is absolutely right and everything

published on our list is dangerous and wrong.

We make no secret of the fact that we disagree with some of your

research. That's our right. Some of you disagree with the medical

advice given on our group. That's your right. But NOBODY has the

right to harrass, intimidate or defame under the banner of trying

to " help " or " enlighten " other people.

To quote from the most recent letter received from Meg Mangin, R.N.

who I'm sure many of you know ...

" Aisha is a dangerous person. No one who follows her advice is getting

better and some are dying " .

ENOUGH IS ENOUGH. I will NOT tolerate personal attacks on any

member of our list.

Trevor - I applaud you for doing research at all, but you need to be

aware of the behaviour of some people who are happy to present

themselves as associates of yours. It does nothing for your personal

reputation or to advance the cause of your research.

This " war " that is developing stops NOW. We are happy for our

members to be aware of your research, but apparently some of your

members need to be reminded that what works for some does not

necessarily work for all.

I wish you all good health, regardless of how you achieve it.

Sincerely,

Gwydion Elderwyn