Cathy Chester | An Empowered Spirit

How Words Like “Cure” Can Exploit A Community

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.)

cure

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!  

Nope.

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.

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15 thoughts on “How Words Like “Cure” Can Exploit A Community

  1. Cathy Sikorski

    I saw that and thought the same thing. Truthfully, I didn’t even read it. I knew I was getting sucked in. As you know, those with MS are near and dear to my heart, but this is true for all chronic sufferers. We so want to find the magic and alas are sucked in to so much. Yes, speak out and continue to do so. It helps us all. Love to you, dear friend!
    Cathy Sikorski recently posted…Fun and Games with Lisa………..My Profile

  2. pia

    Cure can be a dirty word. A man I know went to India to have his Nonverbal learning disorder “cured” with his own stem cells—the doctor made holes in his brain.

    Many people in the community began to “hate” me because I read “the research” the man provided. It was all press releases–not one real research paper, forget peer reviewed.

    After he had the operation he said he was cured; that he could never think as clearly. People were actually going to go and have the operation or their children were. Some of us begged them to wait a year, and fortunately the cost to get to India and for the operation was enough for people to think.

    We haven’t heard from this man since.

    I understand desperation. But I kept saying that if this really worked wouldn’t there be actual research about it? Doctors talking? Newspaper articles? People had answers for everything I said–not nice answers.

    We can never take hope away from people but we need to use critical thinking when talking about “cures.”

    Thanks Cathy for this very important post.

  3. Liane Kupferberg Carter

    Cathy, this is such an important piece. We see something so similar in the autism community. There’s a whole cottage industry of snake oil salesmen peddling so-called miracle cures and taking advantage of people’s desperation. Some of what they offer is pricey but essentially harmless, like vitamin/mineral supplements, but much of it is downright dangerous — chelation to remove heavy metals, hyperbaric chamber sessions to oxygenate the brain, stem cell transplants, bleach enemas, etc. As you said, caveat emptor. Do your research, discuss it with your doctors, ask lots of questions, and network with people in the same situation. Thanks so much for writing and sharing this piece. xo

  4. Mary Gerdt

    Thanks for raising awareness. Medical info is hard to untangle. We all want a cure. We all want eradication of MS. It can’t be as simple as the news sellers would have you believe.

  5. Jennifer

    With a title like that , sounds like they are only trying to rank high in SEO without considering how it sounds or the impact it will have on people.

  6. Jo Ann Maxwell

    I’m so glad you wrote this is! I hope fellow MS’ers heed your words! It is very frustrating when people come up to you or email or phone and say so-and-so got cured because of this. Not only is it incorrect but it breeds a false sense of hope.
    Jo Ann Maxwell recently posted…Friday Roundup – 9th JuneMy Profile

  7. Jim

    I’ve never been one to try diet, massage, supplements or other non-medically demonstrated therapies to treat my MS in the 11 years since my diagnosis. Well meaning, kind friends and acquaintances are convinced that if I only eliminated gluten from my diet, ate like a cave person (do we really know what cave people ate?), or followed the advice of a practitioner of traditional Chinese medicine, my MS would be cured. I am all for anything that makes a person with MS feel better. I am never critical of those who feel better or even “cured” by any method they try. But I agree with you: be very, very cautious when you hear or read the word “cure.”

  8. Helene Cohen Bludman

    It is so wrong to prematurely hype treatments like this when the outcomes are still unknown. Really unprofessional. In these days of click bait, though, it’s become common, and I hate it. Thanks for sharing your perspective, Cathy. I agree with you completely.

  9. Ruth Curran

    Oh I feel you on this Cathy! False hope is so dangerous and claims of wonderous cures, even when coming from a place of hope, can just plain hurt. I saw the study, thought of you and our other dear friend, read it, and saw how even though this is an amazing delivery system and a complete game changer, it is highly doubtful that they will figure out how to test it in humans in our lifetime. Promise is great but sometimes promise mascarades as false hope. I love that “one girl’s opinion” and point of view! You and your voice are a gift and a valuable source of thought provoking information.

  10. Lisa McKenzie

    Once I got to text of the article, I came to think this researcher is doing interesting work; that hyperbolic headline doesn’t help her, either. When she, inevitably, produces something less than a cure, whatever progress she makes might be framed as a failure.
    Lisa McKenzie recently posted…What’s Wrong With This Picture?My Profile

  11. janet tancredi

    for some reason, every time I comment it comes back to me saying, ” You’ve said that already.” So before I comment again, please let me know if you get this, and if so I will submit my comment. Thank you!

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