Carolyn Leary, Chair of our Group, tells us about it...
I first got involved in the Sheffield ME and Fibromyalgia Group in 2018 after seeing the film ‘Unrest’. The film captured some parts of our story – my daughter had been severely ill since early 2013. It was the sort of illness where many people didn’t really ‘get’ how ill she was and it was a very isolating experience. Once we were through the most acute 5 years, I was ready to reach out to others locally, though I didn’t imagine anyone would have been as ill as my daughter. How wrong I was, only locally there are hundreds and maybe more, who are housebound and bedbound, spending days in darkened rooms and isolated, intolerant of noise and light, and forgotten to the world.
Time to shout about this.
When I contacted the Sheffield ME and Fibromyalgia Group, I was met with a very warm welcome from Chris Wintle, his mum, and Hilary Hicklin. The Group had already run for many years. Sometimes it had run entirely on voluntary efforts, and sometimes the Group had been successful in getting grants from various funders. When I joined, the Group were just completing an application to the National Lottery Community Fund which fortunately was successful and resulted in our fab staff team. Hilary was getting poorly so I soon stepped into the role of vice Chair and then Chair. One of the challenges for almost all Trustees is balancing their enthusiasm for the Group with their health and energy, not easy.
The Group’s main purpose is to create opportunities for mutual support, and to promote awareness about the illnesses.
Over the years Group members have hosted drop-ins at coffee shops and supermarket cafes around Sheffield and beyond, bringing all sorts of people together. We are so grateful to those who have volunteered to do this, it’s provided the backbone of the Group. Drop-ins are still continuing to be hosted by our members, either online or in-person.
I’m pleased to say that we probably have more activities running now than at any time in the Group’s existence.
We're always building our programme of activities from our members' feedback, while trying to access the necessary funds. Wellbeing activities like mindfulness, qigong or seated tai chi have been very popular as many members have found that they help manage symptoms. This year there is a special focus on arts workshops thanks to our member Marie's fundraiser, which will be a lot of fun, giving an opportunity for socialising as well as developing new or existing skills. Have a look at our current programme of activities.
We’ve also taken seriously the role of raising awareness and improving services locally.
The Group played a significant role in shaping the ME Clinic when it was initially set up, and after some years of less contact we now have strong relations with the clinic. We were looking forward to working together, along with the University, on implementing the new NICE guideline, but it is subject to delay. We are also liaising with other local organisations to help shape support for people with long covid experiencing similar symptoms as people with ME/CFS or fibromyalgia.
Our work around benefits and social care goes beyond supporting our members through claims and entitlement checks; it is as well liaising with local decision-maker and key actors to influence better practices and educate professionals.
Each May 12th we have raised the profile of the illness and of the Group by holding public events in the city centre, supported by our local MPs and with powerful speakers sharing their stories in words and in song.
The Group has over many years hosted eminent speakers in the field, and we continue to be delighted that many seem willing to give some of their time for our Group. You can find previous speakers and talk recordings on our website.
We are especially excited to be hosting a talk with Professor Ron Davis to start our 20th year.
Professor Davis is an eminent scientist, he is Professor of Biochemistry & Genetics, and Director of the Stanford Genome Technology Center at Stanford University. Wikipedia notes ‘In 2013 Davis was named, alongside Elon Musk and Jeff Bezos, as one of today’s nine greatest innovators by The Atlantic'; 'A substantial number of the major genetic advances of the past 20 years can be traced back to Davis in some way.' You can register to the talk here.
During this year ahead we hope to celebrate the Group’s achievements and also the resilience and the creativity of our members. We're planning to organise an arts exhibition of our members' work to showcase their talent and raise awareness of the conditions and our Group. We're wanting for this exhibition to comprise a dedicated space about the history of our Group, which is longer than you might think...
Our Group is officially 20 years old, but in reality much older than that.
The 11th of October 2001 is the 'birth date' chosen for our Group as it is when the support group formally became a registered charity. However, it had already existed for many years as a friendship and support group. We are collecting testimonies from early members and founders of the Group, with a view to filling in the missing bits and reconstitute its rich history. So keep an eye out for the rest of the story!
Carolyn Leary
Chair
A big thank you to our donors, funders, allies, volunteers and members for making our Group a real source of support for people for the last 20+ years!
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