re COCHRANE COLLABORATION: MULTIPLE SCLEROSIS REVIEW GROUP

[Guest guest]

Multiple Sclerosis GroupMrs Liliana Coco Unit of EpidemiologyIstituto Nazionale Neurologico C. BestaVia Celoria 11Milano 20133ItalyPhone 1: +39-02-2394 2201Fax: +39-02-2394 2713Email: neuroepidemiologia@...

http://www.cochrane.org/cochrane/revabstr/MSAbstractIndex.htm

http://www.cochrane.org/contact/entities.htm#CRGLIST

Dear Mrs Coco,

Re Cochrane Collaboration: Multiple Sclerosis Review Group

For your information I enclose a copy of an email sent recently to the Therapeutic Goods Administration (TGA) in Australia. The email is self-explanatory.

I'm hoping your group will be able to review the anecdotal evidence @ ldninfo.org, and; continuing discussions @ health./group/low dose naltrexone.

Following review of the anecdotal evidence; I respectfully propose a discussion on 'Prescribing Low Dose Naltrexone (LDN) for Multiple Sclerosis' by the review group.

If this proposal is feasible, please advise.

Thank you,

Cris Kerr

Cris KerrAdministrator'Case Health - Health Success Stories' websiteURL: casehealth.com.au & casehealth.comWebsite Email: Online formatckerr@... & casehealth@...55 Webb Street, Stafford Qld 4053

Tel 0423 259 306AustraliaAbout Case Health ... 'Case Health - Health Success Stories' is a non-income-earning community website providing a free health information-sharing service based on visitor's anecdotal stories of health success. The online database also contains a selection of successful research results. Any visitor can submit their own non-identifying health success story, or; search the database for other health success stories of WHAT WORKS then discuss this information with their doctor. Free searches by condition, symptom, or treatment. Don't have time to enter a story via the online submission form? Submit via the email contact form. We'll do the rest. We can also notify you of new stories. Case Health is a safe surfing site and does not ... sell anything, generate SPAM, spy, or conduct any other intrusions.HONcode accredited website.

FOLLOW-UP on email of Monday, 26 September 2005 re Clinical Trial - Naltrexone - Management of Multiple Sclerosis

Dear Sir or Madam,

re Clinical Trial - Naltrexone for the Management of Multiple Sclerosis (MS)My name is Cris Kerr and I've been administering the 'Case Health - Health Success Stories' website for the past four years. The website provides a free community service; facilitating the collection and sharing of health success stories.Through the website I became aware of a drug responsible for improving the quality of life of many Multiple Sclerosis (MS) sufferers. The drug is Naltrexone and there is a growing body of compelling anecdotal evidence (health success stories) for its efficacy. Dr Bihari (USA), a long advocate and prescriber of Naltrexone has alleviated the symptoms and/or progression of MS sufferers by prescribing Low Dose Naltrexone (LDN). Word is spreading and a conference dedicated to LDN was held in New York (ldninfo.org). It should be noted Dr Bihari is now only one of a growing number of physicians who are prescribing Naltrexone to minimize both progression and symptoms of MS for their patients.MS sufferers whose symptoms have been alleviated with LDN therapy are very dedicated to spreading the word and are striving to help fellow MS sufferers (health./group/low dose naltrexone) via information-sharing, emotional support, and promoting clinical trial fund-raising.In addition there's inference LDN may have application for a broader range of chronic diseases.Naltrexone is yet to achieve acceptance as a mainstream treatment option for MS due to absence of clinical trial data. A fund-raising appeal was launched following the New York LDN Conference for the purpose of raising sufficient funds for a clinical trial, however; sufficient funds are not yet available.It is my understanding Naltrexone is an approved drug for the treatment of alcoholism and drug addiction though treatment doses are much higher than the very low doses being prescribed successfully in the management of MS.

Whilst there's growing anecdotal evidence that LDN is a successful and economic treatment option in the management of MS, the absence of clinical trial data means the majority of general practitioners will not prescribe Naltrexone to MS sufferers.

On the surface a clinical trial utilising LDN in the management (minimization of symptoms and progression) of MS appears justified due to;

a) anecdotal evidence of enhanced quality of life;

anecdotal evidence of halting disease progression, and;

c) many associated economic benefits.

I therefore seek your advice:

1) Which organisation is responsible for collecting, analysing, making recommendations, or acting on this type of evidence on behalf of Australians, and; how are recommendations or actions prioritised?

2) If responsibility does not rest with one central organisation, which organisations are equipped to collect, analyse, recommend, or act on this type of evidence on behalf of Australians?

This email represents a follow-up on my earlier email communication of Monday, 26 September 2005.

I look forward to your response.Sincerely,Cris Kerr