Hyping MS Headlines Is Uncool

Ed Tobias avatar

by Ed Tobias |

Share this article:

Share article via email
annuity payments, occupational therapy

MS_Wire_Ed_Tobias
Once again, over the past couple of weeks, we’ve been blasted with headlines trumpeting a new MS discovery. Last month there were headlines about an inexpensive acne drug that supposedly could be used to reduce the symptoms of early MS. This month it’s headlines about a “cure” that’s just down the road.

“Meet the Cambridge scientist on verge of curing Multiple Sclerosis” was the headline I saw most frequently. It first appeared in the Cambridge News newspaper and website in the U.K., reprinting an article from the Cambridge Business Magazine, but I also found it on YouTube, Pinterest and many other online venues.

The Mirror carried a slightly different version: “Brit scientist could be about to CURE multiple sclerosis and provide hope for millions.”

And of course, we shared the story right here on Multiple Sclerosis News Today: “Scientist at Cambridge University May Be Close to Finding a Cure for MS.”

The stories are all about Dr. Su Metcalfe, who has discovered a small binary switch, controlled by a LIF. A LIF is a stem cell particle that regulates an immune cell. The LIF is able to switch off that cell to prevent it from attacking your own body, but it also can be switched on to allow it to attack an invader. In MS, it would prevent immune cells from attacking myelin while allowing them to perform their normal protective functions, and that sounds very promising.

However, when headlines above MS stories use phrases such as “on the verge of,” “could be about to” and “may be close to finding” a cure, they always raise a red flag with me as a journalist. (And they did this time). So I dug a little deeper, and found a few things that curbed my enthusiasm about the way this research is being presented.

While Dr. Metcalfe has a PhD in pathology from the University of Cambridge, she is also a businesswoman. Metcalfe founded, and is chief scientific officer, of LIFNano Therapeutics. She and her partners are looking for venture capitalists to invest in their business. They don’t expect to be able to raise enough cash and obtain the necessary government approvals to begin clinical trials until 2020 at the earliest.

While I applaud any potential advances in the search for an MS cure, and the content of the articles written about Dr. Metcalfe’s work appears to be accurate, what’s written lacks some support. And, I have to strongly criticize those headlines. The website Multiple Sclerosis Trust, based in the U.K., is correct when it used the word “premature” to describe the hopes for a quick cure, and it goes on to list these reasons:

  • This article originally appeared in Cambridge Business Magazine and in the business section of the Cambridge News and is intended to attract investment.
  • As is sadly quite common, the headlines make a bold claim that isn’t entirely backed up by the article.
  • The technology has not yet been trialled in humans and won’t be until 2020 at the earliest.

So, reporters, writers, and bloggers: Please be discerning when you write, or copy and paste headlines that aren’t fully supported by the story that follows. Above all, stop misleading your readers and MS patients with headlines that are hyped. We all have an obligation to write responsibly.

(You’re invited to follow my personal blog at: www.themswire.com)

***

Note: Multiple Sclerosis 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 Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Kyle Warendorf avatar

Kyle Warendorf

I have many well meaning friends. Knowing that I have MS, they eagerly forwarded "Dr. Su" articles from many sources. I love them all but as soon as I see verge/cure/solve I take out my huge grain of salt :-)

Reply
Ed Tobias avatar

Ed Tobias

Hi Kyle,

I should get a huge salt shaker. Why didn't I think of that long ago?

Ed

Reply
Karl Gross avatar

Karl Gross

Thank you for your clear article and wise words- unfortunately "hype" sells, but we can expect responsible websites to at least tone down their rhetoric!

Reply
Ed Tobias avatar

Ed Tobias

Hi Karl,

I'm pleased that you liked what I wrote. Yes, web sites need to present information accurately and responsibly but readers also have a responsibility to question what they read. Too much information is consumed by people who fail to think about, and question, that info.

Ed

Reply
Phil Longford avatar

Phil Longford

One day, hopefully, someone will come up with a cure, but we are right to be cynical. J K Rowling has provided millions to fund research, and hopefully a cure (her mother had MS), and I would trust her results, rather than someone solely out for profit. Watch 'The Fugitive'.

Reply
Kurt Skinner avatar

Kurt Skinner

I can be naive but want to believe articles written about MS. I have PPMS diagnosed about 15 years ago. The first splash of information about Ocrevus hailed it, especially regarding PPMS. A real PPMS therapy could make big news and heaps of free advertising for the big pharma maker.

I suppose I want to remain innocent. My excitement over first "breaking news" on Ocrevus, Primary Progressive and FDA approval had me daydreaming of physical health, energy, being able to travel and regain my once high quality life.

It took a while to get the truth behind the hyped Primary Progressive approval.

It's nice to feel hope but learning the truth via further investigation was a serious disappointment. Yep, I could try Ocrevus and risk so much to maybe gain a few extra months before needing a wheelchair. I could also die of cancer.

Still the FDA did approve this essentially redressed, old, well known drug and the maker was willing to create fake news designed to create high visibility. There wasn't really anything to advertise.

The news did make me excited and happy and even anticipating. For a 24 hour period I believed something good was on the PPMS horizon.

I'm sure the press was great for the drug maker, especially on some old RRMS drug with a changed line of code, a new name and a new patent, a new dazzlingly high price and new FDA approval.

Fake news made me very happy for a whole day.

Reply
Carmela avatar

Carmela

There are so many of these and then the stories die and there is no follow-up. I do not get excited anymore but those around me without MS think so many cures have been found and so why am I not cured!

Reply
Jana Morgan avatar

Jana Morgan

The high a proposed cure gives is wonderful but the low when you find out it is a lie is awful. I think I would rather no news!!

Reply
Ceegee avatar

Ceegee

Ditto, ditto, ditto.
That was a great article and the comments - well just so true.
I understand what Kurt Skinner is saying about appreciating his day of hope. I've been there but have since become much more critical about what I read regarding progressive ms. I have to protect myself from unnecessary disappointment.

Reply
Ed Tobias avatar

Ed Tobias

Thanks for the comment, Ceegee.

It would be nice if we were all critical readers (and viewers and listeners) when it comes to the information we receive. Being well informed requires being a pro-active information consumer.

Reply
Paul A Dye avatar

Paul A Dye

This and others like it prey on those of us who suffer the disease because we have very little hope. MS is a MonSter thief that pig pharma understands what a cash crop we sick folks can be. The aforementioned article is another one in a long list of them. Critical thinking skills are difficult for people with cognitive decline and the greedy "industry" we've become know this.

Reply
DAR avatar

DAR

👍

Reply
Ben Jones avatar

Ben Jones

As someone who has been "battling" MS for nearly 20 years, I find this type of article discouraging. Exaggerated claims with vague information, as usual. Also, the dreaded "animal model" of MS rears its ugly head. The mouse disease used in early trials is NOT EVEN RELATED to MS. I do not know of a single "promising" mouse trial for MS treatments that ever lead to a successful treatment, much less a cure. I agree that this was irresponsible journalism at best and hype to raise money at worst. Here we go again. I want a cure as much as anyone but saying you're "on the verge" of a cure when human trials are still years off is irresponsible at best.

Reply
Deborah Haygarth avatar

Deborah Haygarth

Bad heading but interesting reading. She has published in scientific journals. This seems to be the way treatments are going. Stem cells, nano particles. It's pre clinical trial stage so funding is needed. I wouldn't write it off just yet. I have secondary progressive ms.

Reply
Mar avatar

Mar

Me too. I used to be so vibrant, loved life. Now, MS sucks the life out of me. In my eyes, this article allows me to dream I am a lively daughter, wife and mom. Not with MS. I could barely walk now.

Reply
Tina avatar

Tina

For all this hype, nothing has come of this news story. It's been, what 4 months and no updates, nothing. For people like me who have this horrible disease, our MS doesn't just stop when there is no news to report.

I think we should only pay after a cure is found. Work for free, find the cure, and then we pay you. Yeah, that's what should happen. Cures would be fast then.

Reply
Ed Tobias avatar

Ed Tobias

Hi Tina,

Good point, though it's been nearly 3 years, not just 4 months, since I wrote about this. I'll look around and see what I can dig up.

Ed

Reply
nero avatar

nero

any news?

Reply
Ed Tobias avatar

Ed Tobias

They were supposed to start clinical trials this year but, as far as I can tell, that hasn't happened. Also, as far as I can tell, there's no cure for MS.

Ed

Reply
Daniel avatar

Daniel

I have also said that people with all Neurological diseases need answers not. I have had RRMS for 18 years and counting....but we need to find a lifeline for our
own sanity be it family, friends, or pets whomever and till a 'cure' is found. Not 'hype'but answers.

Reply
Daniel avatar

Daniel

I too have RRMS and have it for almost 20 years. Don't tell US (MS patients) that there is a cure on its "way". We have been waiting days, months, years for some good news just all we get is hype! I look for news every day via websites, tv news, etc... And will do this no more. I feel it's my addiction. I feel for those who have MS and those who have a neurological disease to find a cure NOT hype!

Reply
Ed Tobias avatar

Ed Tobias

Hi Daniel,

Thanks for your thoughts. I think it's unwise to ignore news, medical or otherwise, but we need to be alert to hype and educated about what we read. Get your information from sources that have proved themselves to be reliable and be sure to read beyond the headlines...as I'm sure you do.

Ed

Reply

Leave a comment

Fill in the required fields to post. Your email address will not be published.

Dancing Doodle

Did you know some of the news and columns on Multiple Sclerosis News Today are recorded and available for listening on SoundCloud? These flash briefings give our readers an alternative option for accessing information important for them.

Listen Here

Survey Icon

Video