The First Step to Change is Awareness

Saturday 01 May 2021

The month of May is Chronic Immunological and Neurological Diseases Awareness Month, with May 12th more specifically being M.E. Awareness Day. May 12th 2021 will mark the 29th anniversary of M.E. Awareness Day.

May 12th was chosen for M.E. Awareness Day as it was the birthday of Florence Nightingale. Florence was the founder of modern nursing and she herself became chronically ill in her mid-thirties after returning from the Crimean War. The illness she had was very like M.E. and it often left her bed-ridden during the last 50 years of her life. You can find out more information in regard to this in A Short History of Myalgic Encephalomyelitis by Louise Sargent.

We have come a long way in the last 29 years in regard to medical care, acknowledgement and diagnosis; however, it is still not where it should be. The research needs to continue and for this to happen, awareness is key. Showing support and raising awareness is something that is a lot easier than some people may think:

Social media can have huge advantages for people with chronic illness in a general sense; there are so many pages and support groups to be found online and Facebook communities like the M.E. Support Facebook Page where you can connect with like-minded people. In the case of awareness, it’s really easy to use social media to get people’s attention and show support without much effort or technical knowledge being needed.

Facebook has so many ‘profile banners,’ also known as Twibbons, that you can add for many causes to your profile picture, free of charge and with ease. This feature enables you to raise support and awareness of an organisation, charity or event very simply and it can have a big impact at times, especially if lots of people use the same Twibbon.

Using ‘hashtags’ on posts is another simple but effective way of spreading awareness. A lot of events will have their own adopted hashtag (for example, the #MillionsMissing movement for M.E. awareness) and to get support for the cause or organisation you simply need to place the tag at the end of your post.

Sharing people’s posts and events can also impact greatly. A lot of the time, with many things in life, it is truly a case of ignorance is bliss. It only takes one person to post a picture or post that captures someone for them to really think about that subject. Knowledge is a very powerful thing and making sure the right information is out there is a key step in spreading awareness. Personal stories, I feel, always are much more relatable than just a bunch of over-complicated prose; especially in the chronic illness community; when it comes to information and reading, the simpler the better. Please consider sharing your own story with M.E. Support in recognition of this important month.

Of course, these things only go a small way to making sure support and awareness are out there and it takes money to get the research needed to explore more about M.E. This is where fundraising and donations come in. I am no stranger to fundraising, I have raised money for charities that are close to my heart for many years in many ways. For the more abled or for family and friends of people with chronic illness, there are large scale events such as Kiltwalk that allow you to pick the charity that you want to benefit from your participation. This year they made it a virtual Kiltwalk so that you could pick your own challenge and distance for the weekend chosen. Over 1,500 charities have benefitted from Kiltwalk kindness this year.

There are a lot of big charities that have coffee mornings or afternoon tea events, which are a great idea and relatively simple to organise. As we are currently still in a pandemic, Zoom or Microsoft Teams is probably the safest way to do an event like this for the time being. Due to M.E. charities being smaller and at times lesser known, these events need to be organised by the person who wants to raise money.

Just Giving has been one of the main platforms for many years to allow people to raise money for causes that mean a lot to them. They now have Just Giving Crowdfunding which doesn’t ask for any kind of fees to raise funds and the charities get all the funds raised.

Go Fund Me is another popular fundraising website that is used in a very similar way to Just Giving. I haven’t used this platform as often but I do know a lot of people who have used this in the past for charity events.

Action For M.E. is one of many M.E. charities dedicated to researching the illness and sharing all things related to M.E. for the community. They have a page dedicated to M.E. Awareness Month and all the things that they know are happening for it. Their Walk For M.E. fundraising campaign has been going every year since 2013 and has seen people walk, run, swim and ride from all around the world to raise funds for M.E. research.

In 2015, my husband did a bungee jump that we organised ourselves through Highland Fling Bungee to raise money for M.E. Research UK and he had an amazing experience. Who out there is brave enough to take on an adrenaline rush for charity?

In the same year I organised a craft event at my local university, also for M.E. Research UK and not only did it raise funds and awareness for M.E. research but it also gave small businesses and individuals a chance to promote themselves and let others see who they were and what they could do. After the year we have had, this could be the boost that local small businesses need, too.

For more ideas on how to fundraise and what you could do, check out The Giving Machine.

Louise and M.E. Support have been celebrating and spreading awareness, not just for M.E. Awareness Day, but all through the year. The M.E. Support Online Shop has a vast range of products to raise awareness that can easily be given as gifts or, as I did, used as part of wedding favours. From awareness ribbons, pin badges and patches to keyrings, high quality tote bags and even balloons. The shop is currently having a stock clearance sale and with every purchase you get a free gift. Please be aware the cart will only calculate UK shipping and any international orders need to be organised by Louise via her Contact Details.

Louise goes above and beyond for the M.E. community and has brought M.E. Support to us for the last 20 years, mostly out of her own pocket. The last year has really hit so many people hard and Louise is no exception. If you are in a position to donate to Louise and M.E. Support, you can find out how to do so on the Donations page, where you will find a very heart-warming letter from Louise.

Please do consider these options to raise awareness and support this May for chronic illness awareness and in particular, M.E. Awareness Week and Day. So much is taken from us without our choice and we need to start building up the voice that is already out there. We need the support of everyone, whether you are chronically ill or not, whether you care for someone who is chronically ill or have a family member with illnesses, to start getting the respect we deserve and need in the medical professions and we need government to start seeing our illnesses for what they truly are.

Be kind to each other, it’s tough out there and knowing there is hope and care in the world is sometimes a life saver.