EULAR Edgar Stene Prize 2018
EULAR Edgar Stene Prize 2018
The European League Against Rheumatism (EULAR) has launched the Edgar Stene Prize 2018. Every year, EULAR and EULAR’s Standing Committee of People with Arthritis/Rheumatism in Europe (PARE) offer the Edgar Stene Prize to people living with rheumatic and musculoskeletal diseases, for the best essay based on a specific topic.
I have compiled a summary of the Prize in the blog below, and attach the rules from EULAR:
https://simonstones.com/2017/07/31/edgar-stene-prize-2018/
This year’s winner was a lady from The Netherlands, who described her experience with fibromyalgia. I was also lucky enough to win the Edgar Stene Prize in 2016, and it would be great to see another UK winner in 2018! ☺
Simon Stones
FMA UK Trustee
Lisa McLernon's charity skydive
Lisa McLernon, 37, from Sutton-in-Ashfield will skydive in September in Langar, Nottinghamshire with UK Skydiving Adventures. She has already raised £750 on www.sponsorme.co.uk/lisamclernon and she continues to fundraise. The night-shift postal worker in Beeston will jump out of a plane at 13,000 feet to make a difference. Lisa told us: ‘’I'm supporting Fibromyalgia Action UK, Alzheimers Research UK, Nottinghamshire Wildlife Trust and Royal Scool for the Deaf Derby. All the money raised will be equally split between these charities.
It is my first time fundraising for charity and I have decided to jump (literally) right in at the deep end and do a skydive. It seemed a good idea at the time!
I have particularly chosen Fibromyalgia Action UK as I have a number of close friends who I see suffer this 'invisible' illness on a daily basis and I feel I need to help towards a cure as well as raise awareness.
Research study - self-compassion, coping strategies & wellbeing in fibromyaligia
Research opportunity: Take part in an online survey into the role of self-compassion, coping strategies and well-being in fibromyalgia.
Self-compassion is often thought of as acting kindly towards ourselves. This project aims to explore whether self-compassion plays a role in coping strategies and emotional well-being in people with fibromyalgia. This is important because it may help researchers to understand the role of certain psychological therapies in helping to support the emotional well-being of people who experience physical health conditions, like fibromyalgia.
If you agree to take part, you will be asked to complete an online survey. You will be asked some demographic information about your gender, age, ethnicity and about the duration of your fibromyalgia symptoms. You will then be asked questions about self-compassion, pain acceptance, fibromyalgia symptoms, emotional well-being and coping strategies. This will take around 20 minutes to complete. To take part, you must over 18 years of age and have a fibromyalgia diagnosis. This can be a diagnosis made by a professional or you may be self-diagnosed.
Dr Gemma Evans from the University of Chester is conducting this research project, which has been reviewed by a University Research Ethics Committee. Further information about the project can be found here.
To take part, please click the following link:
https://chester.onlinesurveys.ac.uk/self-compassion-coping-strategies-and-well-being-in-fibro
Awareness Week 2017 3 -10 Sep 17
Awareness Week 2017 will run from Sunday 3rd to Sunday 10th September 2017 ... what are you doing to raise awareness?
Hayley Kenward & her friends abseil down the Spinnaker Tower
Hayley Kenward together with four friends will abseil 100 meters down the Spinnaker Tower on the 12th August to raise funds for FMA UK because her partner, Michelle, lives with fibromyalgia. The Emirates Spinnaker Tower is an iconic building soaring 560 foot (170 m) above Portsmouth Harbour and the Solent. It is taller than the London Eye, Blackpool Tower and Big Ben and has already established itself as a national icon for Britain. Hayley and her friends have raised £670 already, which is a fantastic result.
Hayley told us: ‘’I have organised a small team to abseil down the Spinnaker Tower and we are doing it for your charity and also Stroke Association. I'm doing this for my partner Michelle who's been suffering from fibro for the past 6 years. She never complains and carries on regardless of being in so much pain. A true warrior.’’
Michelle wrote a blog on living with Fibro and you can read it here: https://www.atouchofhope.co.uk/single-post/2017/04/17/Living-with-Fibromyalgia
Research study - available treatments
Eleonora Fetter, a Master's Psychology student at the University of Essex is carrying out a short study on patients with fibromyalgia. The study will include a brief survey evaluating how patients feel about available treatments to reduce their symptoms and which therapy they think is the best. The survey will take no longer than 20 minutes to complete.
You can find the survey and further details at https://essex.eu.qualtrics.com/jfe/form/SV_b9NEdxfB2hay8sZ
More Articles...
- Benefits Helpline Closure - July 17
- Kathryn, Adam and Kaytlin raise £365 for FMA UK in the Summer 10K Wolf Run
- Nagasaki (Japan) Fibromyalgia Symposium
- Lewis, 5, runs Mini Great North Run and raises £250 for FMA UK
- Kerry Sheran from Gift that Bottle donates £1 from every item to FMA UK
- Annie's Wigg inspiring solo inline speed skating at the Le Mans 24h Roller in France
- 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.
