“Perhaps there is no false hope, but only hope.” ~ Barack Obama
The subject line caught my eye. They had me at the word cure. So I opened the e-mail. The first line said, “This message contains information about an experimental therapy the government doesn’t want you to know about.”
So I examined a few paragraphs and was directed to hit a link that would lead me to more data.
I didn’t do it. But I can’t help but feel silly for entertaining the thought of following the link. I should know by now, miracles don’t come in spam emails.
Lately I seem to be getting a large amount of these types of messages. Last week I received a social media advertisement promoting a nutritional regime cure-all. For some reason I took the bait. I followed the link to a website that informed me I was consuming the wrong types of foods. The site began highlighting the benefits of eating large amounts of broccoli, spinach and other leafy greens. This unique food combining technique was advertised as a cure for cancer, multiple sclerosis and other afflictions.
It was so condescending and essentially blamed me for making myself sick. It then offered a remedy that could only be obtained by purchasing a book containing a rigid meal plan.
I know these types of magic potion treatments have no scientific evidence to back their claims. They are simply manipulations that exploit our vulnerabilities. A promised miracle when there is no known cure. And just like most schemes, they are based on false hope.
Nevertheless, I find myself wanting to believe the testimonies and personal stories I receive in my email. I still sometimes glance at articles explaining the benefits of various experimental therapies that reverse symptoms. And I can’t help but be amazed by the before and after pictures posted on social media.
I think I’m a pretty smart person. I understand my circumstance is out of my control. No amount of broccoli can make me well again. And because there is no known cure, the best I can do is work with my healthcare team to manage disease activity, ease exacerbations and perhaps slow progression.
I know hope is not a strategy. But no matter how skeptical, doubtful and cynical I am, for some reason, I keep falling for their nonsense. Hitting every link that promises me a cure. I can’t stop myself from looking. It’s just so tempting.
I keep thinking, “Maybe. Just maybe. This is the answer I’ve been looking for.”
But it always turns out to be a lie. That’s why I have to make sure I can recognize the difference between “false hope” and “real hope”. So my curiosity doesn’t have me believing in treatments based on wishful dreams and baseless information.
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False Hope— Combining a hopeful outlook with a distorted reality. An unshakable faith your problem will be solved with no need to know any more information.
Real Hope— Combining a hopeful outlook with an accurate reality. To fully understand the difficulties and know you can prevail in the end. To be encouraged, despite the hard challenges that lie ahead.
Yeah, like you, I should know better. But, like you, I hold out a tiny bit of hope that there might actually be something out there that will help. And, knowing better, I still click. And find myself disappointed every time.
hello, my mother has MS. i am constantly looking for any way to help. i have been to a few support groups. i dont think there is ” one size fits all. when i come across anything to do with MS i read it and share it with my mother. Like Stephen my mom and our family are still very hope full. Sending love and positve vibes to anyone going through this and their loves ones
Hi Nicole! I’ve missed seeing your blog and was getting concerned. I look forward to your blogs. Thank you for putting into words what so many of us deal with everyday. We know what funding and efforts are going if into finding a cure and although most of us know that a “cure” for some will not be a cure for everyone, we can’t help but hope that someday….
Blessings on you and all who are working toward and hoping for that cure for MS.
Yeah, it can be a roller-coaster of emotions. I’m optimistic that we’ll see a resolution to our current situation.
I fell for some news of treatment earlier this year. HBOT (Hyperbaric Oxygen Therapy). There was news out of LSU in New Orleans that a child nearly drown but was left with brain damage. Doctors were able to place the child in a Hyperbaric chamber and her brain miraculously repaired itself.
I was riding that high for a couple of days. Then when I came to reality I hit rock bottom. I understand what you mean. Hope is awesome for the time that it lasts.
Anyone still remember the “‘CCSVI-Miracle”” ?/
Life is hard enough without schemers, who just want to heal their own bank account
Totally agree with you Nicole,
Take care
I asked my Neuro about getting on one of the HSCT trials theyare doing in Australia. Nup, not eligible. Diabetes, Asthma & MS. A perfect storm apparently
Really insightful Nicole, thanks. As a veteran neuroscientist – now living with a progressive form of MS – I keep telling people that anything written regarding a degenerative brain disease that features the word “breakthrough” or “cure” is not likely to be authentic. Scientists just don’t use those kinds of words in describing their results. But, “improvement”, “development”, “progress”, are words that are used, and describe things that do happen, we shouldn’t forget that. But neurodegenerative diseases, and the humans that get them, are far too complex to be solved by one (or two or ten) clever experiments. I’m glad you get that – so many don’t. Still, sometimes mere progress is enough to improve our lives, so I haven’t stopped watching and hoping. Stay strong.
You pressed the key! I’m a neuroscientist doing reasearch on MS for the past 9 years and get so heartbroken when people follow these scams. Seriously, are we going to spent our lives and taxpayers money finding a “cure” and then hide it under the rug or inside a dark closet? True, I love science, but the main drive why we do biomedical research is because we want to save lives and improve the quality of life of people, like Nicole and many others that share with us their burden. I love to read My New Normals, it reminds me of the reason I go to the lab everyday.
Thanks for reading. You are why I created this blog.
Pam, I asked my neurologist about stem cell transplants and he said since I was unwilling to try the drugs he suggested that had gone through clinical trials, why would he recommend something that hadn’t. End of discussion.
I’ve been dealing with MS since 1984. I figure if they find a cure someone will send me an email. Tongue in cheek. Hope for a good day, a few good hours, a nice lunch with friends, or a phone call from my sister is enough to keep me going.
I definitely relate to your experience. Remaining hopeful based firmly in reality is a constant challenge. Doing so while remaining positive is also a challenge. I appreciate my circle of support helping keep me focused and realistically hopeful – I know that you have the same!
Hi Nicole. I feel sometimes that hope is all we have. On a good day, its a wonderful feeling (for me), I do my best daily to stay positive and hopeful. Of course, some days are easier than others. What are your thoughts about a stem cell transplant? Have you ever considered it? I was excited when this first came about . Then I read about the process and now I am a little leery. Still hopeful, just unsure if this would be the right course for me. Take care