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 and/or 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 found 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 was made in finding that elusive cure. As a matter of fact, the more I found brazen copies of the original, the deeper the pit in my stomach dropped. It is frightening how any decent current affairs/wellness website can take itself seriously when it 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.
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. 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.
(*) Click here to find more places where the original article was republished
◾ 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, 2019. 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.