I’m promoting a different kind of ALS awareness this month

I love learning about all the great activities happening during ALS Awareness Month, but I also worry that we’re attracting the attention of unscrupulous health advocates and clinics who target vulnerable ALS patients and their families. My health-fraud antenna is on high alert.

Spending 30 years managing the first hospital-based complementary and alternative medicine center in Iowa helped me fine-tune the skill of knowing if a therapy was legitimate or not. If there was valid research confirming the benefits of an alternative therapy, we were allowed to offer it. Thus, I learned how to read research documents inside and out.

Lately, I’ve seen an increasing number of nontraditional ALS treatments that claim to be legitimate being offered. After flying under the radar for years, these dodgy health advocates have built professional websites and offer webinars, newsletters, and more, just to sell their “cures” to unsuspecting ALS patients.

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Why are we so vulnerable?

It’s a loss of trust in the medical system, and I’ve felt it, too. When I noticed my walking was off balance, and after a few falls, I visited my doctor. I had always trusted my doctors to tell me what was wrong, how to fix it, and when I could get back into the swing of life.

After going through an arduous diagnosis process, my doctor told me it was ALS. But there’s still no prevention or cure, and it might be a long time before scientists discover one.

Like many ALS patients, I felt like the rug was pulled out from under me. The same feelings of shock surface when we’re told the ebbs and flows of symptom progression make it difficult to create a long-term medical plan. We’re told, “Let’s wait and see if anything changes in a couple of months.”

This is where many patients feel frustration and desperation. Their body clock is ticking and they can’t wait months or years. They need help now and they tell themselves, “By golly, I’m going to find out how to fix it myself.”

Who shows up?

Ranging from well-intentioned health practitioners to totally unscrupulous “experts,” they offer a sense of hope to ALS patients that the medical world can’t compete with.

I’ve read the websites of practitioners who became passionate about a theory. Even though that theory was rejected by mainstream medicine, they found a way to open a business and offer their proposed treatment to desperate patients.

Then there are the totally dishonest businesses that don’t see patients as human beings but as dollar signs. Their online articles and testimonials sound convincing. They lead readers through a convoluted concept of basic nutrition, digestion, and physical science and hope to tap into patients’ beliefs that they can be miraculously cured.

I’ve been amazed to read that I supposedly have brain fungus, a leaky gut, liver disease, low chi, and my body is overflowing with toxins! I must be the healthiest feeling sick person ever.

Nevertheless, ALS patients have had their dental fillings removed, paid for expensive blood tests, and loaded their kitchen counters with vitamins and powders. It’s visual, it’s comforting, and patients convince themselves that they’re doing something.

How to avoid the health frauds

Let’s start with the fact that if and when a cure for ALS is discovered, you will not hear about it first on Facebook, Twitter, YouTube, or the spam folder of your email. It will, however, be plastered on the evening news and in mainstream media.

According to an ALS Association fact sheet titled “FYI: Be a Careful Internet User,” the third most common reason people use the internet is to seek health information. I encourage you to read this guide, which lists warning signs to look for when considering a form of treatment or therapy.

Another excellent resource is ALSUntangled. This website lists proposed, current, and completed reviews for hundreds of alternative and off-label ALS treatments.

If you are considering any alternative or off-label treatment, always do a thorough research of the business, peer-published articles in respectable medical journals, online complaints, and so on. Again, if something sounds too good to be true, it probably is.

Enjoy the ALS awareness activities during the month of May and support authentic organizations and research facilities. Together we can help fund a cure for ALS and at the same time learn how to live well with it.

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to ALS.