From the Desk – June 2012
Since the inception of the internet, the access to information has become so much easier. I guess that’s why the adjective – “the information super highway” has been used by many to describe the web. It never ceases to amaze me how I can find an answer to almost anything by using my best friend, Mr Google. This ease of gathering information can be attributed to those who readily post the information through various fora and websites. And to those people who post accurate information – thank you.
In my own circumstance, I have a wide range of interest and sufficient knowledge to be an active contributor to debates or discussion within some of these fora. I have also played the mentor role to those new or novice people entering these fields of interest. This mentoring I take seriously and frequently advise that one needs to be critical in assessing and discriminating between good and bad information.
In fact, what has prompted this theme in From the Desk – were two separate instances – one being my need to find technical information for a project I am currently working on. Thankfully this information was found and used to assist. The other instance was yet another email promoting a “cure” for MD. I average at least on of these emails or website links on a weekly basis.
The downside of the internet used for gathering information from sources such as Wikipaedia is that much of this information has been posted and “self-edited” without scrutiny and veracity of its accuracy.
I can list the various and different “cures” for MD I have received, ranging from:
Milk being the cause of MD, sleeping on hundreds of fridge magnets to “realign muscle cells”, using snake venom, royal jelly, injection of “stem cells” and the list goes on.
These peddlers or false prophets, build up artificial hope, invariably fleece or con tens of thousands of dollars for miracle cures and cause so much harm in a soul-destroying way when the cure does not work.
Any information claiming “cure” from non-accredited sources should be read with a bag-full of salt!!!
Boris M Struk
It is the norm or accepted scientific practice for ALL medical treatments or cures to stand the test of many trials, results published in peer review journals and subjected to the most critical scrutiny and review to ensure that the science has been proved and it does work! Once the information and treatment has passed this rigorous test, then and only then, would credible organisations such as our MDA, would publish and promote this treatment to the wider community.
We have no desire to “hide” these miracle cures for the people we most care about. We want to protect you from false prophets and we want to prevent you from being financially fleeced while desperately in search of a cure.
Rely on your MDA for this information, we can check its accuracy by talking to our scientists at the National Muscular Dystrophy Research Centre or one of many clinicians we work with.
Rest assured, the minute there is a scientifically proven treatment for MD, we will let you know!
Until next time,