Russell Fleming, Content Manager, ME Association.
The following extracts have been taken from a new article published in the Huffington Post and written by Pippa Stacey who also works for the ME Association.
It relates to a recent campaign by Sport England, ‘We are Undefeatable‘, which is backed by 15 charities, and aims to encourage people with long term health conditions to be more active and to exercise in the belief that this increased activity is beneficial to their health.
The initiative wasn't viewed positively by everyone, especially by those unable to do more because of M.E. or other medical conditions and who already felt they were doing as much as they could. It seemed to assume that disabled people weren't or hadn't tried to be more active and that we were all just sitting around waiting for someone to tell us to do it.
Russell Fleming, from the ME Association, and members of Physios For M.E. recently met with Sport England and member charities from the campaign to inform them about M.E., express our concerns about the campaign, and explain why it was excluding some of the very people they had hoped to engage with.
The summary from this recent meeting can be read below. But we begin with some extracts from Pippa's article…
Our society labels the disabled community as either superheroes or scroungers. The truth is most of us are living somewhere in the middle, writes Pippa Stacey.
I was diagnosed with my long-term illness, ME/CFS, at the age of 19. However, my symptoms first began appearing in a much milder form during my early teens, after glandular fever and a severe anaphylactic shock sent my immune system into crisis.
Each time I approached my childhood GP, trying to find the words for the debilitating fatigue and pain that were gradually gaining control over my everyday life – the cause of these symptoms was very much placed on myself.
“The more I was trying to proactively increase my activity levels, the more irreversible harm it was doing to my body”
Due to a lack of understanding about the physiological markers of the condition that we now know to exist, I was kindly yet firmly advised to increase my physical activity level by walking an hour a day and increasing my activity – advice which ignored the fact I had been professionally training for a career in classical ballet for about 40 hours a week… for most of my life.
Ultimately, the reinforced idea that my life-altering symptoms could be overcome by pushing hard against what my body was telling me led to the rapid decline in my health: the relapse which swept away my mobility in my early twenties and saw me become an ambulatory wheelchair user. It’s incredibly difficult to think that this outcome could potentially have been avoided.
So, to see the new ‘We Are Undefeatable‘ campaign launched online, can you blame me for having conflicting emotions? While there are of course positive elements to the campaign, reinforcing the idea that small, individualistic actions are the way forward, my heart sank at the thought of how this campaign could be interpreted by the non-disabled public.
We unfortunately live in a society that continually splits the disabled community into two camps: the inspirational superheroes, ‘overcoming’ their ‘limitations’ to climb mountains and win Paralympic medals, and The Rest: the ones seen as benefits scroungers, as the ones ‘who don’t help themselves’, the ones who are a drain on society.
“Do people really think that the idea of exercising or getting more active simply hasn’t occurred to disabled people?”
All of these ideas are helpfully perpetuated by the media, as was delightfully demonstrated in the reporting of the Undefeatable campaign that I saw. There’s a remarkable lack of awareness of the grey area: the fact that disability is often fluctuating and highly individualised.
There are any number of factors that influence a person’s condition and their subsequent capabilities, something which consistently goes unacknowledged among the non-disabled chronically ill people’s voices and personal stories and consulting with them, rather than making blanket statements and assumptions.
Do people really think that the idea of exercising or getting more active simply hasn’t occurred to disabled people? Do they think it’s purely a choice, or down to sheer laziness, that those with long-term conditions are often not as visibly active? Did they really think that preaching about what we should be doing, as if they knew more about our own lived experiences than we do, was really the answer?
Launching a campaign encouraging people to get active, no matter how well-intentioned, isn’t going to take away the debilitating symptoms I and many others live with on a daily basis: the same symptoms that mean that rather than the intensive 14+ hour training days of my former life, even once simple household tasks become a challenge.
When your muscles feel like heavy blocks of concrete and all your blood pools to your feet when you stand up, simply making the bed or unloading the dishwasher can leave you struggling.
When you’re only granted a limited amount of energy per day, you have to make choices: and even when you err on the side of caution, there’s still no guarantee that you’ll get things right. One minor over-exertion could leave you insufferably unwell for days.
And if non-disabled people could experience that dark place themselves for even one day, they would understand why it isn’t a risk to be taken lightly.
|I’ve come to learn that not pushing my body beyond what it’s telling me has been the key to successfully managing my long-term condition. The fact that I’m not well enough to participate in sport and activities I could potentially enjoy has nothing whatsoever to do with my own determination to succeed.
I wish the campaign well. Despite everything, I really do hope it improves the quality of life of those who are willing and able to engage with it. However, it’s vital that individual voices remain central to the process.
I’ve learned that I’m not undefeatable and that that’s okay: my physical capabilities don’t define my worth, and that fact simply isn’t up for debate by the non-disabled public.
Meeting with Sport England 12th September 2019
Russell Fleming from the ME Association, Michelle Bull and Natalie Hilliard from Physios For ME, met with Sport England and representatives of the participating charities to inform them about M.E. and raise concerns about the national campaign.
Sport England and the representatives were very receptive to our concerns and keen to learn about M.E. Copies of the MEA Clinical and Research Guide were distributed and we had a good discussion about the good and not so good elements of the campaign.
The following is a short summary statement issued by Physios For ME which appeared on their Facebook page recently.
“A few weeks ago we expressed our concerns about We are Undefeatable campaign. It is led by 15 partner charities and supported by Sport England, which aims to inspire and support people living with long term conditions to be active, in whatever way works for them.
“Whilst as physiotherapists we completely support the message that activity and exercise is beneficial for a range of long term health conditions, we were concerned that there was a very real risk this message would be transposed onto people with ME who have been shown to have an adverse physiological response to activity.
“We contacted the campaign to outline our concerns and were swiftly invited to meet with the team, including representatives from the charities including Age UK and Sport England. They were very receptive to our concerns and as a result of our involvement they have:
- Reviewed their marketing materials and made tweaks where possible, e.g. to say “most” rather than “all and an ‘About the campaign’ section will be added to the website which highlights the health conditions which the campaign charity partners represent
- Shared our initial email with key partners including Public Health England who are also supporting the campaign
- Been proactive in researching the research around ME and physical activity to further their own knowledge base
- Are keen to work with us and ME charities to provide signposting to people with ME or professionals working with this group, so that accurate information can be obtained
“In all we felt it was a positive outcome, and while the campaign remains active we hope that these small changes and the improved education of the campaign leaders will go some way to reducing the risk of harm towards people with ME.
“We hope to continue to work with the #WeAreUndefeatable team going forwards.”
The ME Association
Real People. Real Disease. Real M.E.
We are a national charity working hard to make the UK a better place for people whose lives have been devastated by an often-misunderstood neurological disease.
If you would like to support our efforts and help ensure we can inform, support, advocate and invest in biomedical research, then please donate today.
Just click the image opposite and visit our JustGiving page for one-off donations, to establish a regular payment or to create your own fundraising event.
Or why not join the ME Association as a member and be part of our growing community? For a monthly (or annual) subscription you will also receive our exclusive ME Essential magazine.
ME Association Registered Charity Number 801279