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.

Read more...

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

2018 Year in Review

Below is the start of our year in review document. You can read it all by clicking on the link at the end.

Introduction

Welcome to our 2018 report where we show some of the activities that FMA UK has carried out over the past year. The charity plans to increase its communication output about its activities. We have already increased our content on social media due in large part to recruiting our digital apprentice Reece Henderson to concentrate on this area.

As always, the charity’s main aim is to raise awareness of the condition and ensure those that are newly diagnosed are signposted to information and resources that can help them.  We participated in the patient participation event at Bath hospital in November, attended events at parliaments, as well going along to partner organisations events to represent our condition.

Our charity activities are predominantly carried out by volunteers and supported by a small number of staff. So please read on and find out some of what the charity has been up to across the UK as well as some of the events we have attended and what we are planning for the future.

To read more of our year in review report please click here to view the pdf version.