You know you are in for a story when someone, usually a stranger or the next best thing such as a very casual acquaintance, tells you ‘my aunt had MS but she cured it with ________ (fill in your choice of ‘cures’).
I’ve had cures recommended to me often – and have heard about bee stings, hyperbaric oxygen, and chronic cerebrospinal venous insufficiency (CCSVI), more than is necessary. In spite of the rigorous scientific evidence that these don’t work for multiple sclerosis, these supposed cures just won’t go away.
I remember my own aunt who lived with MS for over 50 years talking about bee venom therapy and opting to not try it, even though this was long before the disease modifying therapy drug options were available. Even though the idea that getting stung hundreds and thousands of times by honey bees will stimulate the immune system to beat multiple sclerosis is not proven effective, people still talk about it.
There is a great explanation from the Science Based Medicine Organization about how anecdotal stories, those without proof, grow into a larger phenomenon. Due to the relapsing/remitting nature of MS, it is quite probable that the few people who believe they have experienced relief from BVT are just in a remitting stage, with no noticeable MS activity. It would be easy to believe that bee stings cured me if I had them happen as my body went into a remission. Of the thousands of people who have tried BVT, there are only a handful of people who claim to have controlled their MS through this treatment; we rarely hear from all the other who try something different and it doesn’t work, including the thousands who put their hope in bee stings. The NMSS sponsored research into BVT and found no evidence it works – and that was in 1998. Almost twenty years later there are people who want to believe bee stings will help me.
Hyperbaric oxygen therapy for MS research was promoted as a cure even earlier than bee venom therapy and it was also a failure in studies. There is no proof that spending extended periods of time for multiple days and even weeks in a hyperbaric oxygen chamber improves MS. There have been even more studies done on this form of alternative treatment than bee stings, according to a search of PubMed.
The verdict is out on stem cells therapy – it is still much too early in the studies to say self-donated transplants work, which means it is still even more too early to hop on an airplane and fly to a third world country or remote island in the Caribbean or to India or Russia, to have a stem cell transplant. If this is a treatment that works there, it will also work here in the US once the studies that are underway are completed in another few years but for now there can be significant risks. Recently an acquaintance told us about the daughter-in-law of a friend of his parents who had been in a wheelchair from her MS and could barely walk until she made a trip to a clinic in Mexico for stem cell therapy. The version I was told had a happy ending but I have since found out the reality is there was no miracle cure for her and she was out a lot of money for a three week stay in a Mexican clinic.
What has me thinking about all these supposed cures again? Just when I thought this story about another fix for MS had finally died down, it’s back in the news again and I have had several people ask if I had heard of this cure……
A current ad on Facebook proclaims an Italian doctor has found ‘a surprisingly simple’ cure for MS. Of course I had to click to follow the link, only to find it was a story from 2014 about CCSVI. There have also been a number of well meaning friends and acquaintances excited by these ads, contacting me to be sure I had seen this cure. I’m not sure why it is making the rounds, but it sure is getting people to notice it and keep the talk going about this “liberation” procedure that hasn’t been proven.
CCSVI is perhaps the best example of how the vocal crowds can create such a demand for something that resources are diverted from elsewhere to study it even though there was no proof to base further research upon. Millions of critical research dollars for MS was used to look into the CCSVI, thanks to the anecdotal stories of a few patients and the very loud demand from people with MS that this must be the cure.
What we know about CCSVI comes mainly from a few positive patient stories such as the Science Based Medicine’s explanation of why bee venom theory took hold, but we don’t hear from all of the people who have had this done and were disappointed in the results. There has even been a study done on the effects of these anecdotal stories and the use of social media to promote CCSVI. To the best of my knowledge all of the rigorous scientific research studies done to test the CCSVI theory show there is no correlation between blockages and MS.
In addition to not being proven as effective for multiple sclerosis, another key thing all of these treatments have in common is they can cost significant money to the patient and are not covered by insurance. The cost of travel as well as the treatment itself can run into tens of thousands of dollars.
More significant, though, is these treatments are potentially harmful.
• Bee stings can cause a person to go into shock from an allergic reaction to the venom.
• Complications from Hyperbaric oxygen therapy are rare but could include burst eardrums, change in vision or even seizures.
• Organ damage, failure to work as proposed and even death are known side effects of stem cell therapy.
• The FDA reports for CCSVI lists complications such as death, stroke and migration of stents placed in the procedure as the major risks
Of course we all hope for the cure that will be simple and relatively accessible to everyone, but there isn’t one for MS yet. Instead of trying any of these unproven treatments, you would be better off taking your money and enjoying a day at a spa or a longer vacation – stress free time to relax has been shown to be more beneficial than any of these other methods.
Wishing you well,
Vitamin D plays a part in regulating the immune system in the human body. As Multiple Sclerosis is an immune disease, Vit D could have a protective/modulating effect that influences the disease positively. read more New Australian study showed again the link between too less sunlight / Vit D Deficiency and Multiple Sclerosis.