Media, stop calling it a cure when it’s not even clinically trialled yet!

Finger on lips

There are only so many times you can tolerate certain immoral opinions or attitudes before you get sick and tired of it.

Sick‘: You wake up from, for example, stabbing facial pain because you turned over in your sleep, with the bad side of your face resting on your pillow. Three painkillers later, you’re still awake.

Tired’ is, as such, equally dastardly in its premise.

Now, I don’t pretend to speak for the world as my voice doesn’t carry that weight, and never will. What I’m to write about, though, is something that many of those living with MS have to confront each time they read newspaper/wellness website articles about any combination of the following words:

Could be. About to. Close to. On the verge of.

Extreme. Miracle. Controversial. Wonder.

And the most important word to people living with multiple sclerosis: ‘cure’.

If a profanity-meter would have been attached to my tongue three weeks ago, it would have been booked for speeding backwards — Fast & Furious style, of course — up and down a cul-de-sac, which doesn’t happen all that often. The instigator? Traditional and certain social media republishing things like, “Doctor on the verge of finding a cure for MS.”

It began after receiving a link in Facebook to this

Meet the Cambridge Scientist on Verge of Curing Multiple Sclerosis – The Hearty Soul on January 29, 2019 at 8:24 pm

It could just as well have been this link:

Scientist close to finding cure for MS which could help 2.3 million people  – Newsner, January 16, 2019

Or, this one:

MEET SU METCALFE, THE CAMBRIDGE SCIENTIST ON VERGE OF CURING MULTIPLE SCLEROSIS, Healthy Living Idea, March 26, 2019

And, also in 2019, published on shared.com, who despite their own guidelines and ethics (“We research and double-check everything we put on our site”) posted this:

Cambridge Scientist Close To Finding Cure For Multiple Sclerosis, Could Be A Revolutionary Breakthrough, Shared, February 18, 2019 by Indu Thomas

Note that the above articles went online in 2019, while the original article by Matt Gooding below did on June 4th, 2017 and on June 6th, 2017 respectively on Cambrigdeshire Live and on the UK Mirror paper:

Meet the Cambridge scientist on verge of curing Multiple Sclerosis: This amazing work could literally change the world – Cambridgeshire Live, June 4th 2017 by Matt Gooding

Brit scientist could be about to CURE multiple sclerosis and provide hope for millions – UK Mirror Online, June 6th, 2017 by Matt Gooding

Six times the same newspaper article, nearly all the same words, nothing more added, and all published between 2017 and 2019.

Who, what, why?

In 2017, Dr Su Metcalfe, a Senior Neuroscience Research Associate at Cambridge University together with her team at LIFNano believed they were “on the verge of a step-change in medicine by using nanotechnology to healthcare – nano-medicine – is now recognised worldwide as a new era in clinical medicine.”

The only catch?

At the time of the publication of the original newspaper article in June 2017, Dr Metcalfe spoke of two major funding partners. She added, “The 2020 date is ambitious, but with the funding we’ve got and the funding we’re hoping to raise, it should be possible.”

In 2018, four funding partners were engaged with LIFNano, but republished old articles do not mention if other partners were found, and if so, who it might be. They did have this to say in 2018:

“Currently, two trials are planned, the first Phase Ib, to confirm safety in patients. The second Phase IIa, looking for benefits in people recently diagnosed with MS. However, we also are fully aware of the needs of all MS sufferers. Therefore, there are other trials planned that may be fast-tracked, these will build on the knowledge gained from the initial trials, and will be guided by our expert panel.”
(The Pathway of Clinical Trials, LifNano, May 2018)

Regardless of how many financial partners LIFNano has to date, it seems they still have a way to go before clinical trials can begin.

So, not enough funding yet. And no info when the clinical trials will begin, either.

Please, think about it, dear media

Depending on the illness and treatment sought, development of new medicines can take 10 to 15 years or more to complete all 3 phases of clinical trials before the licensing stage. Here, “ON THE VERGE OFF” equals heartache to those living with MS including their loved ones. According to MS Trust, “Only one or two compounds in 10,000 tested actually make it through to being licensed treatments. A potential new medicine may be rejected at any point in the development process on safety, effectiveness or quality grounds.”

In 2017, as a businesswoman and founder of LIFNano, Dr Metcalfe goes on a legitimate quest for venture capitalists to expand clinical trials. In 2019 however, social media, different medical or wellness websites, tabloids and other media blatantly copied the same words of the original newspaper article, that is not OK, not by anyone’s standard aside from those looking for clickbait.

In addition, since Dr Su Metcalfe’s regenerative nanomedicine company, LIFNano™, was named Most Promising Nanomedicine Project at the International Nano Medicine Awards in Berlin on Tuesday, November 7 in 2017, this could have been mentioned in articles copy & pasted after this date.

Dear Media,

You should know better.

It began with this article in 2017 (*)

Meet the Cambridge scientist on verge of curing Multiple Sclerosis:
This amazing work could literally change the world
(Cambridgeshire Live, June 4th, 2017)

Two years later…

Meet Su Metcalfe, the Cambridge scientist on the verge of curing multiple sclerosis (Healthy Living Idea, March 26, 2019)

It seems rectitude in journalism is sometimes hard to find.

Please, do not confuse me with haters of the media just because of the less than favourable view I hold about you right now. I am in favour of a free press, and in fact, rather libertarian and definitely very left-wing orientated with a singular love for all thing written, including your newspapers and magazines.

But, as an agency of knowledge, keeper of history and bridge between communities your printed word – any mass media source owes it to their casual readers, daily subscribers, journalists and wider community to speak truth to power.

Depending on the illness, development of new medicines can take 10 to 15 years to complete all 3 phases of clinical trials before the licensing stage. According to MS Trust, “Only one or two compounds in 10,000 tested make it through to being licensed treatments. A potential new medicine may be rejected at any point in the development process on safety, effectiveness or quality grounds.”

Publishing news articles about an idea in 2017 before it has even gathered enough funding before it can go into the clinical trialling stage, is rather not-done. “On the verge of curing MS” equals immediate heartache to those living with MS and constitutes a gross overstatement for something that might never make it to the licensing stage.

Two years on from the original article, however, its content found its way online again via viral sites. But, few of you checked if any progress made in finding that elusive cure since 2017. As a matter of fact, it is frightening how any serious current affairs/wellness website can take itself seriously when it blatantly copies and pastes old content, word for word.

In a field of fast-changing medical discoveries in neuroscience, republishing two-year-old articles with no accountability, respect or updated investigation concerning the original content, is beyond inappropriate for anyone with an incurable illness.

Just imagine, your paper or website could be the only source of information for someone unable to digest medical journals or browse for more info. Imagine, that person might cling to something that might never happen.

Just imagine.
I was one of them.
Lying in wait to catch that cure.
Unfortunately, it won’t be Su Metcalfe’s, not within my lifetime.
I want that cure, yesterday if possible. Not for me but for my loved ones who deserve the person I once used to be.
So, splendid media, is it too much to ask to stop using people with chronic and terminal illnesses as mere clickbait?

MS Trust, a UK charity that believes that no one should have to manage MS alone, asked the media to calm down merely after the original article went live in 2017 in their Talk of a cure is premature post. They added: “The press is “very immature and irresponsible mentioning the word ‘cure’ when there’s no clinical data yet to show that Dr Metcalfe’s treatment is safe and effective.”

To add more juice to the story, Multiple Sclerosis News also added to the taste of the week: Hyping MS Headlines Is Uncool.

Nevertheless, dear Media, I get it. I’m not stupid. Maintaining a newspaper or website is an expensive undertaking. Here on IMSM, I know how to gather income but as a matter of principle I refuse to add advertisements. That principle is not making my words harder or more confusing to read for those who already suffer vision problems caused by their MS. I know where the pitfalls lie, and how to avoid them. People with MS have enough to contend with already, and I want their reading be as easygoing as possible.

Perhaps you find me extraordinarily naïve sticking to that precept. That’s your prerogative. Having said that, I understand that your paper/website needs to generate income, and with as little effort as possible. You want to earn a good living so you can pay journalists to sit in a fancy office and aggregate content, preferably sipping Starbucks coffee while posting old news about serious life issues like incurable illnesses.

Again, dear Media, you are one slick, quick fixer. You know what works: stories that touches people’s hearts and their emotions. You know it will definitely gather income. Good for you. A few short clicks to search, select all, enter, tag and publish. Job done.

Imagine when clinical trials are over and done with already…

And you didn’t look it up before hitting ‘Publish’.

On the backs of people who day in day out, live in hope because they want to get on with life instead of having to go on living with critical illnesses.

For that reason, let me return the gesture of creating bold claims used by those who reprint old news:

“Breakthrough! Journalism on the verge of using miracle cure for own extreme negligence.”

Boy, that felt good.

Doesn’t feel nice, now, does it?

This is when you can call therapies and discoveries ‘revolutionary’, when new treatment can be used for BOTH relapsing/remitting MS and primary progressive MS: Ocrevus for Multiple Sclerosis Treatment: The first drug approved for relapsing and primary-progressive MS

Just an idea, of course.

Apologies for the bluntness of my verbiage. Please speak truth to power. Nothing more, nothing less.

Thank you.

Signature Willeke-Maya

Enough time has passed between 2017 and 2019 to warrant new thorough examining the subject matter before passing as a new newspaper article. If bloggers can deep-delve into consequential, secret, life-changing stories like we see so many times, so can journalists. News aggregators could have sought info about how the LIFNano project is doing right now: is more funding needed and how much longer before clinical trials begin? Or, what else have LIFNano found out so far or if they have an updated view on recruiting. They could also have added new developments in a fast-moving field of MS research.

Dry copying-and-pasting is so not-kerching in my book. It’s cheap. It’s dirty. And it’s immensely misleading.

Ergo, it must stop.

When an organisation like The UK MS Trust says that the press is “very immature and irresponsible,” take heed of those words.

Do not be fooled, though. Others are just as keen to report claims without any backbone:

I kid you not.

You might wonder, “But Willeke, when did you become so anti-media?”

Long story short, I didn’t. At all. I am a reader of just about anything. I read several Irish, American and UK newspapers every day, and my Chromecast can’t seem to find anything else than CNN America or National Geographic.

But, I was once a newly diagnosed patient with relapsing/remitting MS, and I knew feck-all about it

I was clueless about clinical trials and just as clueless about governmental health departments delaying decision-making on whether ill people should receive a certain treatment, simply on the basis of not being cost-effective, even when that treatment is cost-effective across the border.

When MS arrived, concerned family and friends began sending links about a “new treatment being developed and marketed next year.” I was overjoyed, both by their good intentions as well as the knowledge that for sure, there will be a cure for MS next year. Patience often not being my biggest virtue, I remained hopeful.

But, next year arrived.

And another one.

And another one.

Like I said, I knew feck-all and lived in hope.

Because of a host of new research, clinical trials and treatments becoming available the last decade, the barrage of news about MS cures spun wildly. The biggest lie by omission by the media was the length of time it takes for clinical trials take to complete, and their success rate. CenterWatch last year put the success rate of all trialled drugs at nearly 14 percent, which eventually win approval from the FDA in the US.

After fourteen years of life with MS, I have seen more “Cure found!” stories than I could stomach. In a rare sarcastic view on whether a cure might be found within my lifetime, I would find myself thinking, “But why would pharmaceutical companies want a cure on the market when their MS-specific or non-specific product can be used for a lifetime, when a cure would end all their cash inflow?”

I forbid myself to think like this because I know that without medicines, I would not sit here today, and that my life would amount to nothing. It may not be the cure for MS I hoped for, but it makes life worth living every waking moment.

Signature Willeke-Maya

blog-awards-2018_winners-gold-mpu-e15637780089692018 Winner Best Blog Post with ‘3443 Needles’, Blog Awards Ireland, Ashville Media Group, Dublin, Ireland

◾ MyTherapyApp: Multiple Sclerosis Blogs: 10 of the Best in 2019
◾ Ireland Blog Awards: Finalist 2014, 2015, 2017
◾ MyTherapyApp: Best MS Blog for Simplicity 2018
◾ Everyday Health: Top 10 MS Blog of 2018
◾ Feedspot: Top 50 MS Blog 2017, 2018, 2019


© Willeke Van Eeckhoutte and Ireland, Multiple Sclerosis & Me, 2018. Unauthorized use and/or duplication of this material without express and written permission from this site’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Willeke Van Eeckhoutte and irelandms.com with appropriate and specific direction to the original content.

5 thoughts on “Media, stop calling it a cure when it’s not even clinically trialled yet!

  1. This post is great, everything your saying is so true. The only thing I do believe helps some symptoms is a healthy diet and trying to keep weight down. Other than that all the new drugs out there just dont have enough research. No cure and they still want more money.

  2. All too true. Same here in the States. Every much-hyped “miracle drug” tells the same old story: it may or may not stop relapses and progression. The only real added value is to the company’s stock price, which is what much of the media coverage is about anyway. Where’s the motivation to come up with a cure when these maintenance drugs are cash cows?

  3. Wow…you absolutely nailed it. I was dx’d in 2002, and have had quite enough of well-meaning folks sending info about treatments and cures. Thanks for sharing your thoughts!

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