This World MS Day (WMSD), multiple sclerosis (MS) blogger, Martin Baum shares his thoughts on raising awareness of MS in mainstream media outlets.
Just a couple of weeks ago was MS Awareness Week, an annual opportunity to help people better understand life with MS. An occasion for others to become inspired to do whatever it takes to change the world for people like me living with MS. The goal of this social media campaign was - and is - to raise awareness about MS and today (5th May) I searched the internet to see for myself what impact MSAW had made in the national press.
On Google there was an abundance of websites with MSAW headlines to attract clicks to links for MS awareness content with specific lead-ins such as:
March is Multiple Sclerosis Awareness Month, so let's help those suffering from it... The aim of the awareness week, which ends on Sunday, is to give people affected by MS... Every March is Multiple Sclerosis Awareness month, a time for sufferers, family...
Regrettably, not one of these teasers failed to hook any national newspaper or internet coverage outside of their own MS bubble. The same applied last year for World MS Day which makes me wonder if this year will be any different in raising the media profile for MS and MSers alike.
Of course, it’s easy to shrug, do nothing and continue to be a victim of media indifference towards an illness that has been with me for almost 40 years. This was why I recently felt compelled to write an open letter to the producers of Coronation Street after they inaccurately suggested Charles Bonnet Syndrome (CBS) – a condition that causes hallucinations – was something people living with MS commonly develop.
For a syndrome too obscure and extremely rare for the MS Society, the MS Trust, OMS (Overcoming MS), and MS-UK search engines to recognize, CBS has its own support group, Esme’s Umbrella, as it is a standalone condition. Yet the producers who believe, and I quote, that “MS is still a taboo subject”, have remained unapologetic for the distress caused for portraying its MSer character Johnny Connor as losing his mind.
News of my correspondence made its way into the pages of The Times, Telegraph, and even The Daily Star here in the UK. It was calculated that the articles secured a combined circulation of more than 500,000 readers. By my calculation, this is half a million more than is and was seen in the media for either World MS Day 2020 or MS Awareness Week 2021.
In the run up to WMSD, given that the Coronation Street MS storyline is still ongoing, my wish is for World MS Day is for television companies to never again misuse MS for a cheap storyline as they have in 2021, just as PT Barnum did with his freak show back in 1919.