Guest guest Posted October 11, 2005 Report Share Posted October 11, 2005 Hi all, Since my last post ... 1) I emailed the National Health & Medical Research Council on 5th October. In response to my questions I was advised responsibility rests with the Therapeutic Goods Administration (TGA). 2) As you'll recall I last emailed the TGA on 26 September. To date I've not received a response. I followed up with another email to TGA on 8th October (see below). Again, will let you know of any progress worthy of note. Regards, Cris Cris KerrAdministratorCase Health - Health Success StoriesURL: www.casehealth.com.au & www.casehealth.comWebsite Email: Online formatAustralia About 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. Sent 8.10.05 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 Quote Link to comment Share on other sites More sharing options...
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