Anecdotal evidence points to relief for MS sufferers

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.