FMAUK Statement

In relation to a recent post on a research article, FMAUK would like to clarify some information. We as a charity will often post research opportunities for people to participate in – it is only right that we let people know the results of these as people will want to know the outcomes of them. Unless we are a stakeholder or funder we have no influence or input in the design, analysis or the final report.

Whether people agree or disagree with findings, abstracts, or journal articles it is not the charity which comes up with them, but instead is based on the results of the participants of the study itself. Also this may not be representative of the wider population or of individuals within the community but this does not in itself invalidate the results.

Some studies are conducted as part of a student’s doctoral study where they are supervised by a professor or senior lecturer. A benefit of student researchers doing this is that they achieve their educational step in a field they have interest in and may do future research in that is more substantial. These studies are of a pilot nature that may lead to more detailed research later.

We will in future posts, try to give a disclaimer to highlight that we are in no way responsible for the studies or research as well as give greater context. Fibromyalgia is different for everyone, so people’s experiences with the condition will vary – some findings may not apply to people, whereas others may feel that it does to them.

FMAUK have been fighting for more awareness and research into fibromyalgia, and will continue to do so with our awareness graphics and resources which we offer. We are primarily run and operated by volunteers, the vast majority of whom have the condition themselves, and always fight for what we believe in. Over the last year the charity employees has grown a 100% from 1.6 to 3.2 and we expect more growth over the next year but resources will always be an issue. Resources are not just funds, but peoples time and skills and often it is having the correct skills and the right time that is important.

Whilst we respect that people have different and strong opinions, we do listen and act on feedback when we are able to. But our mission is to continue to raise awareness of fibromyalgia and improve our understanding of the condition.

Nathan Coulter climbs Kilimanjaro to raise funds for FMA UK

Nathan Coulter will trek Kilimanjaro in October 2019 to raise funds for FMA UK. This is an extraordinary challenge especially that Nathan himself lives with fibromyalgia. Nathan has raised £375 already and is still raising funds on his JustGiving Page. 

Nathan told us why he decided to raise funds and undertake this challenge: ‘’Six months ago I set myself the goal of summiting the 5 highest mountains in the UK and Ireland and I achieved this reaching the top of Ben Nevis. My furry friend also became the highest dog in Britain -) We both achieved:

Slieve Donard, Northern Ireland 850m

Scafell pike, England 978m

Carruntoohil, Republic of Ireland  1,038m
Snowdon, Wales  1,085m
Ben Nevis, Scotland  1,345m.

What some of you may know but most of you don’t is that I’ve struggled with my health on and off for the past while. I was diagnosed with Fibromyalgia 3 years ago. It’s a strange neurological condition that affects your mind, energy, sleep and nerve pain. As of this year though the doctors and neurologists have been thinking it could be MS (multiple sclerosis). I’m currently waiting on MRI scan dates. Instead of keeping this hidden and letting it depress me I thought I may as well put it out there and do something positive with this.

I’m going to try and climb Kilimanjaro. The highest mountain in Africa and the highest freestanding mountain in the world. One of the seven summits. 
I also want to raise money for charity for Fibromyalgia Action UK (FMA UK) in the process.

Read more...

Mo O'Donnell becomes office manager

Our small team has been growing with the employee full time equivalency (FTE) rising from 1.6 last summer to 3.2 today. FTE is used as a measure as we have only Reece as a full-time member of staff at present and other roles are part time.

This 100% increase in staff means that the board have been relying more and more on the staff, and Mo O’Donnell in particular. Therefore, we recently promoted Mo to manage the office after serving as part of the admin / fundraising team. She has been helping with many of the aspects of the office including fundraising and policy and procedures.

I hope you can join me in congratulating Mo in her new role. I have found her assistance particularly useful with being a volunteer trustee within the office. We are looking to grow into new premises and have already authorised a further member of the team to be recruited. This and our projected growth into areas like group and service development as well as fundraising support means our team will continue to grow and Mo will be working with the board to ensure that this growth is supported effectively. (Des, Charity Chair)

Volunteer Role - Regional Coordinator Yorkshire & Humberside

We are currently recruiting a volunteer to cover our Regional Coordinator role in the Yorkshire & Humberside area.

Our Regional Coordinators are our point of contact for new enquiries via email and telephone, provide support to the local Support Groups in the area, and represent FMA UK at events among other tasks.

For further information and to register your interest - please email This email address is being protected from spambots. You need JavaScript enabled to view it.

Running Against Fibromyalgia

"Hello! My name is Matthew, and I’ve suffered with fibromyalgia for the last 8 and half years.  I’ve had some really bad times with the condition, but last year I decided to join my local gym. Last summer I started working out at the gym, where I started doing the treadmill and bike for 3 minutes and built it up over time. This year I decided to get a personal trainer whom I see once a week for an hour. What I really noticed first of all was going to the gym, and this is the reason why I was able to start running as I was building up my muscles. When I was at a good level with my fitness I downloaded a running app and over a 9 week period I built up to do 5k. 

In my first week, I did 5 minute brisk walks to warm up and 60 seconds running then 90 seconds brisk walking and repeat the whole thing 7 times, then I finished off with a 5 minute brisk walk. I did it 3 times a week. It didn’t feel that I was actually running much, so it was pretty easy to start with. Over time, though, it started getting a little harder. I thought it would be a lot harder because of my fibromyalgia, but I kept going and the next week I increased my running to 90 seconds followed by 2 minutes of walking. It was very much a case of small improvements. I mean, only 60 seconds of running is hardly a big thing. Once I got to 5Km running distance, I started entering races. After I started doing the races, I decided to start increasing my running towards 10Km. I haven’t reached it yet – I’m on week 3 of 6 on my running schedule – but I’m well on my way.      

What I have noticed is that, since I started exercising and running, my fibromyalgia has improved. I was a little cynical about this at the beginning, but I feel a lot stronger and more able to deal with the condition. Don’t get me wrong, the condition hasn’t gone away and there are still times when I have flare-ups, and the flare-ups seem to last as long, but I feel a lot stronger, happier, and healthier, and I can do more.

Because I started feeling a bit better with both the exercising and the running – both of which make you think about posture - I recently started looking at my posture and ways to improve it. My personal trainer suggested that I work on strengthening my core, and one of the exercises that he suggested doing was “the plank”. He said that to get the full benefit of my posture improving I should do core exercises at least five times a week. This made me stand better, and sit better. I now hold my shoulders in a different way and my arms feel more relaxed. All of these little improvements have added up to make the fibromyalgia more manageable.

At the start, it seemed hard to make the decision to actually exercise, to make changes in my life. Once I made the decision and stuck with it, it was and is a case of making small improvements, and slowly but steadily pushing myself forwards by pushing back the fibromyalgia" 

Matthew

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.