- Awareness is year long
- FMA UK offers many awareness resources
Awareness is year long
International awareness day is May 12th in 2018, while Awareness Week is the 2nd September to the 9th so you can star...
FMA UK offers many awareness resources
These are distributed from our office and through support groups throughout the UK. www.fmauk.org/resources ...Benefits Helpline closed 03-17 Aug 2018
Please note that there will be no Benefits Helpline from 03-17 August 2018 inclusive. The helpline will resume on Monday 20 August 2018.
If you require benefits advice during this period, we suggest that you contact your local CAB or welfare benefits office.
FUNDRAISER CYCLE LONDON TO PARIS 2019
Are you or someone you know up for a challenge!!
Fundraiser -London to Paris Cycle 2019
Join hundred of others and experience this famous route combined with celebrating with the finale of world's greatest cycle race.
More information: The cycle will be delivered by Global Adventure Challenge Ltd who have enabled people to raise thousands and taken over 20,000 people on adventures since 2000 for more information on this link
Please click here for brochure
Please click here for TDF Route 1 brochure
We attended NICE 2018 Conference and here is the report
Sarah Hamburg, a trustee of FMA UK recently attended the Nice 2018 conference in Manchester. The theme of this conference was improving healthcare, with a particular focus on technology and how it can help health outcomes.
Patient involvement in activities such as this can help shape discussion as well as keep fibromyalgia part of the health conversation. Anyone can be a fibromyalgia patient advocate with participation on your local GP or NHS trust patient liaison committee being a great place to start.
ENFA Conference 2018 Report
Please see attached a copy of the report from the European Network of Fibromyalgia Associations (ENFA) Conference held in Malta this May, which Simon Stones attended on behalf of FMA UK.
Pain Concern: Airing Pain 103: Pain and Relationships
How pain’s unpredictability can affect interpersonal relationships, and recognising help when it appears.
With between one third and one half of people living with chronic pain in the UK alone, the number of people experiencing the effects of pain explodes when considering family and friendships. For some of these people, life can become a cycle of hospital visits, blood tests, and scans. So, what can be done to ease these relationships?
In this edition of Airing Pain, Paul Evans and eminent psychotherapist Dr Barry Mason speak about their personal experiences with fibromyalgia and ankylosing spondylitis.
With many chronic pain conditions being “invisible”, explaining your pain may seem impossible, and as the family’s “uninvited guest”, it can cause people to close up to those looking to help. Dr Mason explains that not speaking about this uncomfortable topic can lead to further issues, and how opening up can lead to better family teamwork.
We hope this edition of Airing Pain will help those living with pain to understand the importance of communication within relationships.
Airing Pain 103: Pain and Relationships is now available on our Audioboom page, which you can find here.
Harry Corbett-Evans second charity run
Harry Corbett-Evans has run a second run to raise awareness and finds for Fibromyalgia Action UK because his sister lives with fibromyalgia. Harry run the Shrewsbury Half Marathon last week and beat his target of 2 hours! 1:58 to be exact. Harry raised £1,150 so far, beating his target of £1000. We would like to say well done and a very big thank you to Harry!
Harry’s JustGiving page closes very soon: to donate, please go to today:
https://www.justgiving.com/fundraising/harry-corbett-evans
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Highlights
FMA on Facebook
- 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
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.
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.
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 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.
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.
