Below are all the Arachnoiditis Support Sites and links to them that I can find on the Internet which are still operating. They relate to the too toxic positive ionic x-ray dye known as Iophendylate Pantopaque – Myodil and other causes especially ESI.
Plus the other 19 Iophendylate brand names used
within the 107 countries where it was sold.
BLOGS. http://pantopaque.wordpress.com [USA/WW]
If I have missed anyone my apologies and if you wish to be included please make contact.
On the other hand if you do NOT wish to be on here, please also let me know.
At the bottom of this page as I pointed out earlier you will find a link to the best ESI website for those that sadly have been injured this way, others most welcome.
My direct email to this site is
click on graphic for link.
First an overview of Adhesive Arachnoiditis written by Doctor Sarah who not only suffers from this man-made disease, but is a friend and work colleague since the 90s. This 262 page article is very informative and has been of great help to those coming to deal with this disease. PLEASE NOTE, you will NOT develop all the secondary conditions/symptoms listed in this article this depends on a range of variables which are individual in nature.
I also wish to point out this was written in 2003 so all that’s within, may not be up to date and I cannot be held responsible for any errors found within this article. Please speak to your Doctor for any concerns or queries you may have. This site, is a site linking as many related sites as possible and is NOT responsible for the content or views shared within these links.
I will place the front page here and the full article via a PDF below it.
Click on graphic’s below for link
CIAA. GREAT BRITAIN.
I would like to at this time, list below some of the following Support Groups, Societies and Associations from Around the World that are no longer operating due to many reasons, mainly due to the small group or individuals running them becoming too sick to continue, and no one to pick up the reins. I have had the pleasure to have known or worked with these wonderful people running these organisations for more than 20 years, who in their own way have ‘TRIED’ to get this story out,
Cheryl Ahearn, David Propst and Co of the Arachnoiditis Information and Support Network. Ballwin MO. USA 1985>,
John Huntley Founder, Lynn and Co from A.S.A.M Society in New Zealand 1990>,
Lisa Rowe Founder, and Co of the Arachnoiditis Trust UK 1990> Liz Nelson and Co of the Arachnoiditis Self Help group Dorset UK 1992>
Derek & Robyn Morrison of the Chemically Induced Adhesive Arachnoiditis Sufferers of Australia 1993 – 2006.
Joh, from The Dutch Organization for Victims of Medical Contrast Medium 1995>,
Sarah and Robert from The South African United Front for Arachnoiditis Sufferers 1997>,
Dave and Sue and the crew from Arachnoiditis Sufferers of Europe 2002>,
Haro and Keiko くも膜炎グループジャパン [Arachnoiditis group Japan] 2008>
and finally Doc. Sarah, Kim and Ann from The A Word 2000>
Finally, I wish to thank all those that helped my wife [at that time] and myself create in 1993 an Association known as C.I.A.A.S.A. [Chemically Induced Adhesive Arachnoiditis Sufferers of Australia] and 47 Support Groups which was formed and became operational throughout Australia with over 14,000 ‘non-paying’ members. Sadly, like a similar Association in New Zealand both were taken over, today both are no more taken over by “those that knew better“.
These same 2 people formed a new Australian Arachnoiditis Association however from 14,000+ members and 47 support groups membership at C.I.A.A.S.A. this “support Group” members today now stands less than 50.
“Ego is a Curse“.
Shame on you M.Mc & P.G.
Finally, I would also thank our local churches that assisted my wife and I to not only hold a group [CIAA] Vigil outside our Australian Federal Parliament House in Canberra, but also assisting in providing me with transport for all our display material and Banners 15 x 30 ft later for the Rally we held at the 2000 Olympics held in Sydney now 15 years ago, time flies.
To those I have missed my apologies, please make contact so I can acknowledge your ‘tireless’ work trying to get ‘others to listen.