Okay, how did we come about………
18 months ago, my counsellor from MIND asked how I felt about setting up a support group for people with Fibromyalgia as there were many clients there who were finding it difficult to find the support that they needed.
Living only a 25 minute chair distance from the MIND centre, which is at 19 Norfolk Street Sunderland, and with having no luck at finding a group close enough for me to get to I decided ‘well, yeah! okay, go on then’ 🙂
‘I will meet new people and hopefully make some fibro friends too.’
Prior to that I stumbled across a community forum for people with fibromyalgia to go and find support and advice about anything Fibro. I was terrified of jumping into posts not knowing the forum/community etiquette and for being in unfamiliar territory especially not being a Facebook user. The forum is ran on behalf of a charity FibroAction who fundraises to raise awareness of the illness and to help promote healthy research into the condition to the members.
It wasn’t long before I became a full-time fixture and part of the fittings and now help as a Volunteer Administrator and spend my time helping to educate other members about Fibromyalgia and I also help to raise awareness of Fibromyalgia and other chronic illness and invisible illnesses. 🙂
After 20 yrs of living in chronic pain and not knowing why, being told that it was because I was depressed and needed counselling and then turning my back on the NHS for a few years because being told ‘keep taking the painkillers’ wasn’t enough……………
……. I now have a good support network around me and spend my time sharing my knowledge and experience with others just like me 🙂
FibroFlutters was born on International Fibromyalgia Awareness Day May 12th 2014 and we have just celebrated our first birthday 🙂
I have a co-founder who has helped me to raise awareness of our group through the use of social media and as helped enormously to get it up and going, between us FibroFlutters exists and hopefully will continue to do so 😉
WHO WE ARE NOW
We are a Patient Advocacy Organisation & online social media communications network
FibroFlutters patient, health, clinical research, medical, pharma, digital health & AI advocacy.
Support and advice for people with chronic illnesses and rare disorders. Including, Pigmented Villondular Synovitis (PVNS), Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorders (HSD’s), Fibromyalgia, Chronic pain disorders, Musculoskeletal conditions, Chronic Fatigue Syndromes / ME, and Mental Health.
We also have a Social media network for connecting multi-stakeholders from across the medical healthcare industries. It also provides us with a network for sharing information such as the latest research, news and events from a cross-section of areas within the medical healthcare industry.
We also have many other groups/pages/profiles across social media that we use to achieve our aims of Patient, Health, Research and Pharma Advocacy. They also give us the ability to provide advice and offer a friendly hand of support across many social media platforms.
SLOGAN: #chronicillnessVOICE for everyone #notjustpatients
- We are not medical professionals nor claim to be. Remember that you should always consult your doctor about any health problems and not solely rely on Dr Google, or on any information that you may read online through 3rd parties.
- That this site uses google analytics to collect demographic information for content decision making purposes only and not to sell to 3rd parties.
Social and useful links
Its A Doddle – Mapping the communities that care
By Mapping UK Charities, Community Projects, Groups & Organisations together we are creating a national resource for use at a local level. Check out our profile via this button below.
SYNAPSE / Patient Focused Medicines Development (PFMD) joined in 2019
Check out our profile to see what initiatives we’re involved in, what the work will involve and how diverse a group of people that we are collaborating with on improving patient engagement within clinical trials. Very different! Very exciting! Very Grateful!
Got something to share then don’t hesitate to get in touch with us. Also if you want to write for me in exchange for publishing privileges let me know via the e-mail link below.
FibroFlutters are continuously…
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare.
Using a model approach using all the ‘stakeholders’ and a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in!!
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Please can you read our ‘Disclaimer’ & ‘Privacy’ notes. If you have any problems we are always open to discussion, just e-mail Carole
Locally we’re a Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK …
… but we also offer online support, advice and advocacy via our social media network , chronic illness portal, across the globe.
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’m using a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way!
You all need to pitch in and be socially responsible for each other!!