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FibroFlutters

"An informal ‘patient-led’ support group based in Sunderland patient health research pharma advocacy"

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 / pharma advocacy.

Our Services Are

Free Low Cost Subsidised Charged Donation Appreciated

What Would You Like Now?

Choose one of the options below.

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.

We help to raise awareness for varying causes and chronic illnesses whilst working towards creating a patient centred kind of medical healthcare for people with multiple health conditions.  If you have a campaign or event that you would like us to help you with please get in touch Carole fibroflutters@gmail.com

Available for speaking opportunities as a patient or research advocate / expert / voice preferably with support towards travel and accommodation expenses.

`Social media' support via our chronic illness network.

fibroflutters.com our website is deliberately designed to act as a library of resources and is currently undergoing some infrastructure changes to accommodate our expansion to reflect the advocacy work we do for all stakeholders #notjustpatients within the realms of medical healthcare industries.

Open to collaborative projects and would like to construct a regional map for all support groups in the North East Uk, looking for opportunities to co-create and co-design anything that is going to help create better outcomes for the patient.

We are not fundraisers as such ourselves but we will help you to 'fundraise' if you send us your campaigns so that we can include it on our website and in our newsletters that go out across our social media network.

We support the work of our carers and are also open to opportunities to advocate on their behalf, again send us your campaigns so that we can help to increase your voices.  Currently advocating within pharma to improve engagement between carers, patients and pharma so that they can use our knowledge and experiences to create better products for us to use.  Carers often know more about a patient than their GP!

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 – Sunderland Mind Centre (Our Host) ~ social media
  • Charity – Mind ~ social media
  • Charity – Fibromyalgia Action UK (Our Host)
  • Charity – EDS UK (Volunteer admin(s) 
  • Charity –  Age UK (via website and newsletters #chronicillnessVOICE)
  • Charity –  Pain Concern (via website and newsletters  #chronicillnessVOICE)
  • Charity –  Arthritis UK (via website and newsletters  #chronicillnessVOICE)
  • Charity –  Action for ME (via website and newsletters  #chronicillnessVOICE)
  • Charity –  Scope (via  website and newsletters #chronicillnessVOICE)

More to be added

UK Fibromyalgia & Chronic Illness 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

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