Anecdotal evidence points to relief for MS sufferers

Through my website I became aware of a drug that has stopped the progression of Multiple Sclerosis and enhanced quality of life for many Multiple Sclerosis (MS) sufferers. The drug is Naltrexone (also known as ReVia) and my Health Success Stories database contains a growing body of compelling anecdotal evidence that it works, and it works well - but, sufferers can’t get it.

Dr Bernard Bihari (from the US), a long advocate and prescriber of Naltrexone, has alleviated the symptoms and or progression of MS sufferers by prescribing low doses of Naltrexone (LDN). His groundbreaking work, commenced in the mid 1980s, has resulted in a small but growing number of physicians prescribing Naltrexone to minimise both progression and symptoms of MS for their patients.

MS is not the only disease Dr Bihari has treated successfully with low doses of Naltrexone. LDN is cited as being beneficial across a broad range of chronic diseases such as HIV-AIDS, lupus, Parkinson’s, Crohn’s disease, breast and other cancers, and even fibromyalgia. If you’re wondering how these diseases are linked look no further than an errant immune system.

Due to the wonder that is the Internet, word is spreading. A maiden conference dedicated to LDN was held in New York earlier this year, with a second planned for 2006.

MS sufferers whose symptoms or progression have been alleviated by treatment with LDN have formed support groups and are dedicated to spreading the word. They’re striving to help fellow MS sufferers via information sharing, emotional support and fundraising for clinical trials.

At this time Naltrexone is only “officially” approved as a treatment for alcohol or drug dependence, at doses much higher (around 50mg) than the very low doses (up to 4.5mg) prescribed for the management of MS or other diseases.

Naltrexone has not achieved mainstream acceptance as a treatment option for MS due to absence of clinical trial data. While a handful of doctors will prescribe LDN for MS (if pressed), most are too cautious to prescribe a treatment they perceive as clinically unproven.

Clinical trials answer the “who, what, why, where, how, and when” questions that must be answered to establish patient profile, efficacy, optimum dose, safety and so on. Clinical trials establish evidence of successful, safe outcomes or unsuccessful, unsafe outcomes. Doctors therefore, quite rightly, base treatment decisions on clinical trials because this is the safest system to follow and patients wouldn’t want it any other way.

Health success stories written by patients and attributed to LDN are growing exponentially. The many stories from MS sufferers who’ve improved or halted progression of their disease after taking LDN are building a compelling case, but these stories represent only one facet of evidence. Health success stories alone don’t provide sufficient evidence for most doctors to prescribe LDN.

A large number of health success stories does, however; and provides sufficient evidence to advocate a clinical trial.

Clinical trials cost money and are typically initiated or sponsored by those who expect to recoup the cost outlaid for the trial by commercialising its successful results. That’s business and how it should be. If an organisation is prepared to fund the very high cost of research, development and clinical trials, then they are entitled to view the costs as an investment that will turn a profit.

However, Naltrexone has long passed its patent protection period. Drugs outside patent protection are classed as “generic” or “orphan” drugs, because they no longer have a sponsor. A clinical trial, therefore, does not present an attractive commercial proposition for those sponsoring organisations that have traditionally initiated clinical trials - because they wouldn’t gain exclusive rights (and subsequent profits) from a successful outcome. So regardless of the promise Naltrexone holds, nothing happens.

At his practice Dr Bernard Bihari has been trialling Naltrexone since the mid 1980s, resulting in a growing number of health success stories linked to low doses of Naltrexone.

Testimonials appear on core LDN supporter sites: In the US, Dr David Gluck, a childhood friend of Dr Bihari and LDN advocate, with the help of his son, manages the website www.lowdosenaltrexone.org and its sub-site www.ldninfo.org. An LDN for MS Research Fund, sponsored by the Accelerated Cure Project for MS and initiated by four individuals with a keen interest in LDN, is publicised on this site. You'll also find the Foundation for Integrative Research, now known as the Foundation For Immunologic Research (FFIR), founded in 1989 by Bernard Bihari and two colleagues to raise trial funds for the broader range of LDN's promising applications.

In the UK, LDN Research Trust was founded by Linda Elsegood, herself an MS sufferer who takes LDN. Linda’s monthly newsletter contains LDN testimonials. The patients who’ve been helped by LDN are doing what they can to raise awareness and funds for clinical trials … the hard way. You can’t help but be impressed when you see MS sufferers raising funds and contributing to support groups in the interest of helping other MS sufferers.

While there's growing anecdotal evidence that LDN could be the most effective and economic treatment option in the management of MS (for both the patient and the health system), the absence of clinical trial data means the majority of practitioners are still not prescribing Naltrexone. Those that could be helped are not being helped.

When you read LDN stories on my site or others I’ve mentioned here, the first thing you’ll notice is a consistent thread of optimism running through this ever-growing body of health successes:

… I have been on LDN for a little over seven months now and it has given me a lot of my life back. For the first time in many years, the progression of disability has stopped …

… I have had NO new symptoms and NO further progression since starting LDN six years ago. I still drive and do all my own shopping, cleaning, etc. I feel certain, had I not been on LDN, I would not be as active as I am, nor as mobile. I wish every MSer had the chance to try LDN to see if they are one of the ones who would benefit …

The second thing you’ll notice is the extraordinary lengths MS sufferers are forced to go to try Naltrexone. MS is a debilitating condition with multiple adverse symptoms. People with MS are already suffering. You can’t help becoming indignant at the injustice:

… I phoned the neuro … to see if she would give me the Low Dose Naltrexone (LDN) treatment. She had never heard about it … she was so excited about this … she had to clear it with the legal dept … A week later she phoned to tell me the lawyers said no! … My health was being decided by a group of lawyers!! … September 4, 2005: I am happy to report a small but significant improvement. Last night for the first time in years I was able to lift my left foot and take a couple of heal to toe steps ... instead of dragging my foot or walking toe to heal. ...

Research, drug development and clinical trials are commercially-driven by sponsors, but there’s no recognised body that can officially step up to the plate to speak and act on behalf of patients. I know this because I’ve tried, without success, to find an authority that is sanctioned to do so.

The present system is unjust and inequitable. It doesn’t place sufficient value on patient health success stories. It doesn’t place sufficient value on advocating for the patient. It doesn’t place sufficient value on patient-driven research or clinical trials. If it did, there would be a body sanctioned to speak and act on a promising body of testimonials.

How many stories similar to the LDN story are out there? We don’t know, because they haven’t all been collected, stored and shared. A single health success story doesn't register on the public health radar: it is not considered evidence. But the growing volume of related health success stories, however, can no longer be ignored.

The collective LDN story is an excellent example of why “the system” needs to change, why we need to re-balance the scales and give more weight and credibility to patient testimony. We need an organisation chartered to act on this type of evidence: an organisation that values patient testimony and can make recommendations (without prejudice) on behalf of patients from all corners of the globe.

Governments throughout the world could prove they value and give credence to patient testimony by implementing official bodies and processes chartered to act on compelling evidence in the form of health success stories.