The misleading headline Meet the Cambridge Scientist on Verge of Curing Multiple Sclerosis caused some hysteria in the MS community this week. I was sent several private messages, texts and emails from people who love and care about my welfare. Their thoughtfulness touched my heart.
The story was about a Cambridge scientist who sees a solution to the disease using nanotechnology which has garnered some interest from two large pharmaceutical companies and the hope that investors will help fund the “ambitious” target date of 2020 to begin clinical trials. (If you are interested click here to see their pre-clinical trial results.)
A cure from this therapy is not around the corner, if at all, yet the media decided to exploit the MS community with their headlines. This caused quite a stir for hopeful patients crossing their fingers.
Shame on the media for putting aside journalistic integrity in favor of higher viewership.
In the era of fake news and alternative facts we must be careful with our words. They matter. Headlines and books written at the expense of other’s misfortune are cruel and offensive.
It makes me crazy to read some of the empty promises lining the sponsored ads of my Facebook newsfeed. I’ve cured myself! I’m symptom free! You can beat this!
To get a therapy approved researchers must test them in laboratories. The most promising ones move onto clinical trials to learn more about treatment, risks and effectiveness. There are then three phases to clinical trials and in Phase 4, after the therapy is approved and made available to the public, the therapy continues to be tracked for safety, risks, benefits and optimal use. The amount of time it takes to complete a clinical trial varies. It can take from 10 – 15 years to complete the first three phases even before the therapy is licensed.
Over the years I’ve been told to try bee venom, remove amalgam fillings in my mouth, use magnet therapy, go on a low-fat (and high-fat) diet, have my spine manipulated, use a large amount of supplements including minerals and coral calcium and drink aloe juice to ease the symptoms or cure myself from MS. I’ve done none of these.
Some CAM (complementary and alternative medicine) are regulated by the FDA but many are not.
Be wary. Do your research. Ask questions. Reach out to others. Talk to your doctor.
I reached out to fellow advocates who I now call friends to discuss this latest claim. I knew what I thought but wanted to hear their opinions. They didn’t disappoint.
This blog post is one girl’s opinion about the state of cures, scams and journalistic pride and integrity. If you agree or disagree I’d love to hear your constructive opinions. After all, it takes a village.
Here’s to your good health.