Myodil Action Group (UK)

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Speech given by Ursula Coxhead at the inaugral meeting of the Parliamentary All Party Myodil Action Group

What is adhesive Arachnoiditis: Adhesive Arachnoiditis is characterized by severe scarring around spinal nerves. Individuals with severe scarring are typically those who have the clinical problems, disability and incapacitation. The pain is very cruel because it is constant and resistant to therapy. In the 20" century the most common cause of adhesive Arachnoiditis appears to be related to the use of "oil" based substances for the purpose of Myelography.

What is a Myelogram: A needle is inserted into the spine in order to inject a dye .The patient is then X-rayed. Myodil is used to perform such X-rays. Myodil is an oil-base substance and is highly toxic. Glaxo recommends the use of glass syringes to inject Myodil, because Myodil melts plastic!

In 1944 the Food and Drug administration in America wrote following letter to Lafayette (manufacturer of Pantopaque (Myodil is the same).'The clinical reports, which have been submitted, leave one with the impression that a rather larger number of reactions of varying degrees of severity have been observed with the use of this material. We are aware that some of these reactions may be accounted for by the fact that investigators failed to remove the material following examination of the patient! Myodil is manufactured by Glaxo UK; Pantopaque is manufactured by Lafayette USA. Both Products derived from Iophendilate which is a contrast agent originally manufactured by Eastman Kodak for photography.

I started the MAG after I was dismissed from litigation in 1995. The MRI scan, which was used for litigation, stated that 1 suffered from Arachnoiditis. A Doctor who examined me stated in his medical report that only 50% of the pains in my back are due to Arachnoiditis. Up to this day I haven't found another illness, which could make up the other 50% of pains in my back. I realized what was going on, so 1 asked many people who where in the same position to kindly send me their medical reports and MRI scans. Many of these people where dismissed for all the wrong reasons.l0% of sufferers received a small pay out for around £10'000. I contacted Dr. Burton, Director of the Institute for Low Back and Neck Care in Minneapolis. He kindly agreed to look at some of the MRI scans and medical reports which where used for past litigation. He was very upset by the findings and his words proved my suspicion.

1 complained to many departments regarding past litigation, it fell on deaf ears. My colleagues and I wrote letter after letter to the legal Aid Dept. the Health Dept. MP's etc. etc. We had meetings With Baroness Jay, submitted evidence which was very important only to find that every time we where rejected. Miss Jewell stated in a debate in the House of Commons on the 25/3/98 that Myodil was withdrawn by Glaxo from the market in late 1987.This was not the case. A letter from Glaxo states to the Dept. of Health: I wish to notify you that the product Myodil has been discontinued in the UK for commercial reasons. They wish to retain the product license in force, issued in June 1987, as the product is not being discontinued worldwide. The letter is dated 19.9.1988. Miss Jewell mislead the House in the debate.

There are five deaths recorded by Glaxo's ADR reports that have not been included in the MCA ADR drug analyses print. Doctors make their judgment based on knowledge presented to them from the Yellow Card Scheme.

We have papers obtained from the MCA on the licence of Myodil; we can prove that the licence was not valid. The MCA also wrote to us regarding lost papers on Myodil (licence): we have not, despite an extensive search within the MCA been able to locate all the relevant papers which the CRM would have had before it when it considered Myodil in 1987.How was it possible for Glaxo (Operations) UK Ltd. To obtain a PLR for Myodil fourteen month after the registration period had ended? When the PLR for Myodil was granted on the 19/11/73, who signed the papers, documentation's and licence? No answer was available on this matter.

Most of our members Hospital records regarding a Myelogram have been lost or destroyed, or in my opinion just simply flown out the window.

I have obtained papers on toxicity studies on Pantopaque I.E. (Myodil) on Walkerhounds. These studies proved that Pantopaque I.E. Myodil was to toxic and these papers where kept secret and never published. Japan withdrew Myodil in 1970, Sweden didn't use it, and Russia also banned the substance.

I asked Dr.. Burton, were you at any time approached by Solicitors Alexander Harris regarding the criteria for litigation. Yes he replied, we all have been invited to the mad Hatter's Tea Party and the result of the deliberations is pure rubbish. The real issue is not Arachnoiditis; it is adhesive Arachnoiditis, which is a serious disease entity. All individuals who have experienced Myodil Myelography have some adhesive Arachnoiditis. What matters is the degree of the inflammatory response and the time it takes to develop. The criteria for the Group action read as follows: The patient should have been injected with Myodil. There should be radiological evidence of Arachnoiditis not just at the site of the initial pathology or surgery, but also at other levels. Dr. Burton states: Arachnoiditis had to be distinguished from ordinary Arachnoiditis. Post myelographic Arachnoiditis was typically adhesive. Since Myelography was a prelude to spine surgery, it would not be surprising if adhesive Arachnoiditis was in proximity to the surgical site Glaxo recommended in 1972 to remove Myodil after examination I.E. X-ray. It is not possible to remove oil substance from spinal fluid altogether.

Doctors do not understand our condition and very often use other treatments, which will only add to insult. My final statement must be: Would you feel that a Myelographic agent that causes irritation, meningitis in the brain and spinal cord, is a good Myelographic Agent? Do you feel that this knowledge should be disseminated to the public so the doctor has a choice as to whether to use it or not?

Well I believe the answer to that would be that if it caused irritation of the spinal cord and meaninges and other areas of the subarachnoid space, then that information should be disseminated. It would depend upon the level, if it was one in a million then it may not be necessary, but if it's something that is a significant level, then it should be. It is estimated that millions of people throughout the world are suffering from a.A. having had a Myelogram.

A full public enquiry into the use of Myodil itís licensing and the cover up by the MCA and Glaxo needs to be implemented.

Presentation speech for AGM all Party-Group meeting on Myodil 2.4.2003 House of Commons

Author U.Coxhead chairperson MAG

On behalf of all MAG members I would like to express our gratitude to Mr. T. Collins MP for his work to set up the all-Party Group on Myodil. We will miss him as our chairperson for the Group. May I say many thanks for his support and understanding and giving us hope for justice.