Social media and how we can use it to make more people aware

On a twitter poll which we recently conducted, 87% of respondents said that they had fibromyalgia, with 13% not having it. What does this tell us? It tells us that the overwhelming majority of people who interact with us have fibromyalgia. And quite rightly – we are a fibromyalgia charity after all. But what it shows is the potential we have to reach new people. In order to raise awareness, we need to reach out to those who don’t have the condition or who have little or no knowledge of it. There are numerous ways we can get that awareness, and social media plays a massive part in it. Whether you like it or not, social media is increasingly becoming a massive part of people’s daily lives. And it is because of this, that we can use it to our advantage. Taking 30 seconds out of your day to make an engagement with the charity can benefit us massively – if everyone does one small action it can all add up. Liking, sharing and commenting on content can help our posts reach more people and in turn make more people become aware of fibromyalgia.

As someone who doesn’t have fibromyalgia, and someone who didn’t know about it before joining the charity, I feel strongly that social media can help us increase that much needed awareness. If someone doesn’t have fibro, or know anyone with it, then there is little out there that would make them aware of the condition. We want to change that – and with your help, we believe we can.

The above article is my own personal opinion on how we can boost awareness. If you have any suggestions/ideas on raising awareness, please do contact me by email at This email address is being protected from spambots. You need JavaScript enabled to view it.

My experience as a young person without fibromyalgia.

As the communications officer for Fibromyalgia Action UK, you’d be forgiven for thinking that I know it all about fibromyalgia. The truth is I don’t know it all. I hadn’t even heard of the word before I joined the charity. For a while, I had trouble even pronouncing it, never mind knowing anything about it. Since then, I’ve began learning about the condition, as well as hearing personal experiences of it from those in the office and everyone on social media. Hearing how destructive and life changing it can be for sufferers, I now struggle to comprehend how very few people know about it. I now know just how devastating it can be. It’s something that I’m fortunate not to have, but I know it’s something which could impact me or my family at some point. And that’s why I want to make people aware of the condition – especially people who haven’t ever heard of it. But I ask myself, why didn’t I know what fibromyalgia was?

I’d heard of Lyme Disease, I’d heard of ME, I’d heard of Arthritis, But I’d never heard of fibromyalgia.

I’m 19 and when speaking to my friends, none of them have a clue what it is (just like I didn’t before joining FMAUK) – but it isn’t our fault as young people. In my personal opinion, there is near enough nothing that would make us aware unless we knew someone with, or had fibromyalgia ourselves.I also know that it is just good fortune that I do not have it as it can affect men, women, and children.We need to increase awareness of this cruel condition, and we need to make younger people aware. We’ve a long way to go, but by utilizing social media, we have the chance to do so and make people aware of this condition. To reach people who don’t know about fibro and make them aware of the condition, we have to reach beyond our social media pages.

(Reece Henderson)

Listening Books

Audiobooks can be a great way to continue reading when fibromyalgia makes it difficult to concentrate or hold up a book for long periods of time.

Listening Books is a national UK charity that offers a postal and online audio book library service for anyone who finds that a chronic condition or disability makes reading difficult. Membership starts from £20 per year, and they also provide free memberships for anyone who couldn’t cover this.

Find out more on their website here: http://bit.ly/2xEfHpS

Restricted provision of FMA UK helpline

Unfortunately, we are going to have to restrict our helpline service for the next couple of weeks as we are critically short of volunteers to operate it. Therefore, we will be replacing the welcome message to inform callers of when the helpline is best to be contacted while it operates in this limited fashion.

We are currently reviewing how we operate this service as it has been hard to maintain with volunteers but we are not in the position yet to have paid staff operate it. It has always been a critical service that has provided much needed support and signposting of information. 150 returned voicemails from the helpline over the last 6 weeks gives you an indication of how important this service is.

We will keep the community informed of how this progresses but we remain committed to offering this and other services and hope to find a solution that allows us to provide a reliable, informative helpline service.

With this in mind we are reposting our advert for helpline volunteers. If you have already applied in the last few weeks then you should have been contacted and we will be processing your application.

We offer to train volunteers by placing them on the helpline partnerships training events starting with the essential helpline skills course. This is provided free to volunteers and our expenses policy means that a volunteer will not be out of pocket for any expenses while helping the charity.

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Donate to FMA UK by text

With justgivings text service closing we have teamed up with Donr so we can continue to accept donations by SMS.

Used Postage Stamps Appeal

We are pleased to announce that we have new details for supporters to send used postage stamps to.   

Please send all stamps to: 
FMA UK STAMP APPEAL 
10 Chestnut Ave 
North Walsham 
Norfolk
NR28 9X