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Community Project

FibroFlutters

"An informal ‘patient-led’ support group based in Sunderland"

Who We Help, Why We Help & the Difference It Makes

FibroFlutters is an informal ‘patient-led’ support group based in Sunderland, North East, UK & we are there for people with Fibromyalgia, Me/CFS, Chronic illness, Chronic Pain, EDS/HMS, mental health, musculoskeletal disorders, hypermobility, & other debilitating invisibleillness. 

All are welcome to join us, it isn’t a formal event but we’re also not just a drop-in either, we do have information pamphlets for a whole variety of health conditions from the Musculoskeletal side of chronic illness, also EDS, ME+CFS and access to other information too.  We also sometimes have guests join us for lunch when we meet.  I require signatures from those that turn-up but I don’t keep tally of how many times people turn up.  Not even I can get to all of them because of my health.

FibroFlutters is also a Global online advice and support network across many social media platforms with a presence in varying communities as well across the globe. We use this network that I have developed to do a lot of our advocacy work, but we also use it to network with other chronic lifers, and also people from within other areas of the medical healthcare industries.  It all happened because of a communication problem that needed fixing and now we span the Globe with a fantastic presence from across the pond that matches that from here in the UK & Europe putting us in a rather unique position when it comes to #chronicillness  health / research / patient advocacy.

Our Services Are

Free Low Cost Subsidised Charged Donation Appreciated

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Fluffmeister Arts is my Artist name for the campaign posters and posts that I produce for campaigning and raising awareness across Social Media Channels.

If I can make at least one person a day smile then I am happy.  Fluffmeister is my alter-ego in the world of chronic pain, fibromyalgia, hypermobility & EDS/JHS/HSD’s and chronic illness in general and still likes to pop a healing fluffie hug on people’s timelines when I can see they’re having a rough day.

~  Carole aka Fluffmeister / Fibrofly73 

I am usually kicking around on Twitter, but you can find me at a few places.

Carole Sian @scrufton73    OR  @FibroFlutters

I’m often hanging out with these two: Gabrielle “Rie” Lopez our Website Co-editor  @rieofletters Sonia Hawkins Founding Five Flutter  @Hawkins65S 

Please feel free to chat to us about your health we also have lots of health problems and are very much patient’s underneath despite all of our responsibilities.  Remember we’re not doctors or health consultants just regular patients like you.

Strut Your Stripes

New Group for Ehler’s Danlos and Hypermobility Disorders / HSD’s

In Feb 2018 I was fortunate enough to be accepted along with fellow Founding Five Member Vicky Green to run a group for EDS UK members through FibroFlutters. It is a separate group of members with its own regional Facebook Closed group / community that is specifically for EDS UK members only. We will have quarterly meetings once up and running properly..

Additional Information

We have a sister group that runs their ‘Fibromyalgia’ meetings on the first Monday of the month at Millview Social Club, in Sunderland.  If you’re local, and newly diagnosed, I can tell you that they will help you find answers to some of your questions.  This group does require membership.

Together as groups we work, voluntarily, to help support the chronically ill in Sunderland, and for us across the NE UK and then Globally through our Social Media Network.

Our work also involves supporting FMAUK – Fibromyalgia Action UK

We currently Advocate for :

  • Charity – HMSA (currently informally as non-members)
  • Charity – Sunderland Mind Centre (Our Host) ~ social media
  • Charity – Mind ~ social media
  • Charity – Fibromyalgia Action UK (Our Host)
  • Charity – EDS UK (Volunteer admin(s) Area co-ordinator for Ehlers Danlos Support UK members in Sunderland and surrounding areas)
  • Charity –  Age UK (via #chronicillnessVOICE)
  • Charity –  Pain Concern (via #chronicillnessVOICE)
  • Charity –  Arthritis UK (via #chronicillnessVOICE)
  • Charity –  Action for ME (via #chronicillnessVOICE)
  • Charity –  Scope (via #chronicillnessVOICE)

More to be added

UK Fibromyalgia Blogs List.

The Best UK Fibromyalgia Blogs from thousands of UK Fibromyalgia blogs on the web using search and social metrics. Subscribe to these websites because they are actively working to educate, inspire, and empower their readers with frequent updates and high-quality information. These blogs are ranked based on following criteria

  • Google reputation and Google search ranking
  • Influence and popularity on Facebook, twitter and other social media sites
  • Quality and consistency of posts.
  • Feedspot’s editorial team and expert review

Read our post via the following link  >>>

FibroFlutters celebrates being one of the Top-10 Best UK Fibromyalgia Blogs via Feedspot

Disclaimer and Privacy Statement

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