Fibromyalgia Action UK

Fibro Myths
Awareness is year long
FMA UK offers many awareness resources

Fibro Myths

check out www.fmauk.org/campaigns for more info

Awareness is year long

International Awareness Week was the 2nd September to the 9th , so please let us know what you did for it. Let us feature...

FMA UK offers many awareness resources

These are distributed from our office and through support groups throughout the UK. www.fmauk.org/resources ...

Kay told us why she has chosen to run despite living with fibromyalgia: "I have had Fibro for 6 yrs now. Before Fibro I was extremely active, very for and a very active mother to my daughter to.

Then I was hit with Fibro after a mental breakdown.

At the start I was bed bound 3 days a week, somedays paralysed from waist down with chronic pain, unable to use my legs. I then progressed over the first 3 years onto crutches then onto a walking stick to aid me walking. The last 2 yrs I have concentrated on learning the new body I have, soaking up all information and learning my new boundaries. I slowly trained my body to gradually get used to my chronic pain.

I spent my time writing whilst doing so and finally released a book called My Fibro Rant to raise awareness for Fibromyalgia and help others feel less alone. But I made sure my book was honest, truthful but with a humouress twist to make light of a bad situation. I learnt how people around me reacted and dealt with my illness, partners, family and my daughter included. I wanted my book to help all that was effected not just us sufferers.

Amanda's Keddie fibromyalgia 5k run challenge

Amanda Keddie will defy her fibromyalgia and will run 5k in the Simplyhealth Great North Run to raise awareness and funds for FMA UK. She shares her story with us: ‘’My name is Amanda, I'm 20 years old and I was diagnosed with Fibromyalgia 2 years ago. I am in my third year studying for my degree in Interior Design in Newcastle, and I'm also a coach for a competitive cheerleading squad. For 3 years I have been in an acoustic duo, signing and playing guitar around the North East. I use these gigs to spread awareness and raise funds if I can for Fibromyalgia.

On Saturday 8th September, I'll be doing the Great North Run 5K for Fibromyalgia Action UK. Unfortunately, due to my fibromyalgia and a recent back injury, I'll be walking the 5K, but I really hope that this doesn't discourage anyone from donating! This charity is amazing and has helped me immensely since my diagnosis. This is a thank you to all of the selfless people who are involved. Hopefully I can raise enough to make a difference, but simply raising awareness would be an achievement.

Let's show Fibro who's boss!

Amanda x"

To donate visit Amanda’s JustGiving page: https://www.justgiving.com/fundraising/amandakeddiefibro

Fibro on BBC Radio Nottinghamshire today

Dawn Hartley participated on BBC Radio Nottinghamshire today. They have been talking about the symptoms and how it can affect you.

The show can be found here and the audio about fibro starts around 10.10: https://www.bbc.co.uk/programmes/p06hb4w1

Des Quinn appeared on the show at around 10:45 to chat about the condition as well.

A Tribute to Dr Peter Fisher

We are all shocked and saddened to suddenly lose our friend and colleague Dr Peter Fisher in a road traffic accident on 15th August 2018. Dr Fisher, a Consultant Rheumatologist, was Clinical Lead for the Fibromyalgia Service at the Royal London Hospital for Integrated Medicine, UCLH NHS Foundation Trust. He served the RLHIM for over thirty-five years, half of them as Clinical Director and Research Director, as well as being an internationally renowned teacher and spokesperson for Integrated Medicine with an emphasis on homeopathy. He will be greatly missed by colleagues and above all, the thousands of patients who benefited from his care.

The RLHIM Fibromyalgia Service and hospital staff will continue to provide the high quality care it has done so under the leadership of Dr Fisher. An interim lead has been appointed to treat new and existing patients.

Campaigns

FIBROMYALGIA AWARENESS WEEK IS TAKING PLACE BETWEEN SUNDAY 2ND AND SUNDAY 9TH SEPTEMBER 2018

Thank you for getting involved in raising awareness of fibromyalgia among your community as we celebrate Fibromyalgia Awareness week 2018. Fibromyalgia Action UK’s theme for awareness week builds upon the theme for awareness day on May 12th. ’Don’t Delay, Connect Today’ aims to highlight that early diagnosis and recognition of fibromyalgia, and timely access to evidence-based treatment and peer support, are essential for the long-term health and wellbeing of those living with fibromyalgia and their families.

Below is a copy of our campaign pack that you can share with your support group, online friends and other advocates for raising awareness of fibromyalgia. We've also included lots of other resources (shown in the campaign pack) for you to download and share!

Don't forget to get involved online by using the hashtag #Fibro2018.

Research findings using artificial intelligence theory

Professor of Health Psychology, Michael Hyland, from the University of Plymouth, reports on research recently conducted looking at the classification and understanding of functional disorders such as fibromyalgia, using theory based on the science of artificial intelligence. Fibromyalgia Action UK helped to advertise the study in 2016.

Three blind men wanted to feel what an elephant was like. One said it was like a wall, another like a tree trunk and the third that it was like a snake. Although each man accurately described what he felt, none had described the elephant. This story provides an analogy of what, I believe, is happening with fibromyalgia. Some people think it is a problem with nerves; others that it is caused by problems with capillaries. Others have focused on yet other mechanisms that cause pain. People with fibromyalgia know that fibromyalgia is not just pain, but involves many other symptoms as well. I have been working on a theory that can explain the whole of the phenomenon of fibromyalgia – like trying to see the whole of the elephant. The theory is based on the science of artificial intelligence rather than biology or psychology.

Highlights

FMA on Facebook

How to Contact Us and get more info

Our professionally printed Information pack on fibromyalgia can be found here to view. You will also receive a free copy on request. We also have a booklet for young people with fibromyalgia that you can obtain on request and will be on the website soon.

FMA UK has recently changed some of its telephone numbers for helplines and groups. Please check here for more information on the New Contact Numbers if required.

FMA UK offers a range of support and information including:

National Helpline 0300 999 3333 (10am - 4pm Mon - Fri)
Benefits Helpline 0300 999 0055 (10am - 12pm Mon, Wed, and Fri)
Complimentary information booklets for doctors and other professionals (fully referenced)
Books and videos
Website Contacts with legal specialists
Conferences
Local support group and helpline contacts

The association is run by volunteers, most of whom have fibromyalgia.

FMA UK Request for More Trustees

We are appealing for further trustees to aid the running of the association. Expertise is currently needed in finance, fundraising and publicity. We already have volunteers contributing to these areas, but are seeking trustees to take responsibility for the overarching administration and development.

Trustee meetings are held monthly via Skype and last about 2 hours. There is an annual meeting that coincides with our group leaders’ meeting over a weekend.

Have a Medical Pack sent to your GP

If your Medical Professional needs some education in fibromyalgia you can request that an FMA UK Medical Professionals Pack is sent out to them. All we need is the name of the Medical Professional and the address of their practice. We will then send a pack to their surgery addressed from us to them.

You can request a medical pack using this form.

FMA UK maintains its Information Standard accreditation

We are delighted to announce that our recent assessment for The Information Standard has been successful and we continue to fulfil the criteria for using the TIS logo on our publications.

The rigorous process that has to be in place ensures that up to date evidence is used and presented to people in an appropriate way. The process is ongoing and requires much diligence by everyone involved.

We would like to thank everyone who has worked on our publications or sent in their comments and suggestions for improvement

FMA UK accepts Text Donations

Text_donation

FMA UK is now able to receive text donations from your mobile. With our partners you are now able to send a text from your mobile to 70070 with the code of FMUK01 and your amount that you would like to donate to us. For example if you would like to donate £5 to FMA UK^* you would text FMUK01 £5 to 70070. You would then be given the opportunity to add Gift Aid - meaning FMA UK benefits from an extra 25% on top of your original donation.

Join a Support Group

You can find a Support Group near you by contacting the Regional Coordinator for your area. If there does not happen to be a support group near you then maybe you can join with some other members and set one up. Support groups provide a social benefit as well as the opportunity to share tips on coping with fibro. They come in all shapes and sizes and we are often told how they have helped people.

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