ABOUT US > FibroFlutters
FibroFlutters is an informal 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, muscoloskeletal disorders, hypermobility, & other debilitating #invisibleillness. We are a friendly bunch of people that get together once a month to share our stories, discuss health issues and current awareness campaigns and projects etc.
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.
One of our wishes is to give people the opportunity to share their experiences with others and know they are not alone, advice & share useful information & also to help raise awareness of our differing Chronic/Invisible Illnesses.
We also have many other groups/pages/profiles across social media that we use to acheive our aims of Patient/Health/Research Advocacy and also gives us the ability to provide advice and offer a friendly hand of support across many social media platforms. 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.
These links can be found towards the end of this post
We also do this via our newsletter #chronicillnessVOICE which is a health newsletter for everyone #notjustpatients
Aiming for multidisciplinary approaches to medical healthcare, or patientcentricity, patients-included, etc my reasons for this are to encourage people from different sectors to take a look at what is happening in other parts of the healthcare industries, spread the patient voice and advocate for changes where needed.
We also share chronic illness related paper.li s via the following link >>>
My Co-editor Rie Lopez and I, Carole Scrafton also will be producing these regular newsletters once the website has finished reconstruction.
- A Mental Health Newsletter >>>
- A Research Related bi-monthly Newsletter >>>
- My Disability Matters News & Opinion Digest | See the latest headlines >>>
- Pharma / Science / Tech / AI – A mix of News >>>
- MSK ~ Rheum ~ Arthritis ~ Pain | A selection taken from FibroFlutters #chronicillnessVOICE
We are also aiming to have links to a variety of Community Platforms each with differing quirks across the globe to make it easier for readers to find the kind of community they’d like to join.
There are a few other changes on the horizon to hopefully improve your reader experience
We also have many other groups/pages/profiles across social media to help spread awareness of each illness and appropriate charities.
FibroFlutters HQ is our main hub for our Facebook network of groups and pages for our online advocacy and support group, which also spans many social media platforms including our Twitter Account @FibroFlutters, and this website which has our largest number of supporters and followers because it includes stats from a combination of our social media profiles.
A more detailed map of our network can be found further down the page
Our main AIMS / GOALS
To help develop, nurture and help to create a multidiscplinary approach to all aspects of medical healthcare so that #chronicillness patients can receive the type of care and treatments that they need.
- Sunderland in North East UK getting its own specialist centre where we get treated for our multiple conditions simultaneously by a team, instead of one by one. Having all of our data stored in a way we don’t have to keep repeating ourselves every time because we often miss key things which could be harmful. Digital Health should prevent that from happening. WE believe that our Multidisciplinary Medical Centres would help to reduce the cost of healthcare in the long term, especially if the collaberative approach to medical healthcare actually works!
- There has been a lot of good interest in this idea fromacross a wide variety of people including, pharma, HCPs, patients, carers and even digital & innovation, plus members of a political party that I am also a member of.
- A specialist centre could provide specialist programmes and education with integration of patients and medical professionals and involving patient-engagement. Being connected to the local hospital will also encourage teaching opportunities as Sunderland University has just began offering Medicine as a degree. Of course, this opens up a whole brand new avenue of opportunities that will help us become completely patientcentric.
- The centre would also be a headquarters for information with a data hub storing information such as where support groups can be found, charities and organisations, speakers, and academics/educational/researchers/pharma can use the facility for meetings / speakers /education.
- In addition to storing geographical and contact data the hub would also store our medical data making it easier for each sector to research, find possible research candiates, network for collaberative studies / projects in order to help with PPI and patient-engagement, giving our region better access to information as a whole. It’s a distant wish.
- We endeavour to promote the idea of a multidisciplinary approach to medicine in other wordss we aim to become a true-patientcentric, patient-led, patient group, to help develop and increase #patientempowerment #patientvoice within the realms of research; healthcare providers; pharma, bridging the current gap regarding accessibility whilst building a communication avenue between patients, HCPs and pharma, and all other stakeholders within the medical healthcare industry.
Of course if something like were to work it would make sense to roll it out nationally, which of course is also a distant dream but one we will also fight for!
Here’s a look into our world
The aim is to support the fundraising efforts of charities if we can and to help educate where needed and provide literary material to those who’d like it. Alongside that of course is our wish to encourage present and future research into Fibro, Me/CFS, EDS/HMS, & other illnesses, including #rare, in the hope that one day a group of scientists will say ‘I’ve cracked it all we need to do is…..’
We do this in a variety of ways. Through sharing e-postcards/posters across our social media network; handing out our illness literature with other patients, doctors, consultants and whoever shows an interest; helping our sister group when they run their fibromyalgia awareness drives; supporting local charities and organisations when possible and by pointing people in the right directions for where to find information.
Shopper bags printed with quotes written by FibroFlutters members and raffled to raise money for Fibromyalgia Action UK for Fibromyalgia Awareness Day 2016
Each bag when sent out to winners contained a selection of goodies, literature and FibroFlutters printed postcards.
EVENTS With Sunderland Fibromyalgia Support Group
The top photos show us with our Special edition t-shirts (see poster above) on whilst helping out, all profits from our t-shirts were added to the shopper bag raffle and fundraiser to raise £250 towards educational literature for FMAUK 2017
This year, 2018, I took a different approach for myself personally, and also for FibroFlutters to raising awareness, by changing to representing the patient voice at places where it will help to make an even bigger difference.
My own personal work as a Patient Group Leader, advocate/ambassador/voice has led me into the world of conferences, pharma and digital health, innovation, medtech, clinical trials and Big Data, AI and robotics for surgical procedures, biopharma and a few suprising opportunities. An area that I often wondered how I could get access too when the time arose to expand our reach further into the medical healthcare industry through networking on social media.
Of course this is how myself and fellow Founding Five Flutter, Sonia Hawkins, ended up in Barcelona at the eyeforpharma 16th Annual Barcelona conference as #patientvoice and fascilitators of roundatables, she was my colleague, friend and carer/assistant while we were away.
Due to a number of bad experiences with social media, in the earlier days, I developed a fear of being photographed or filmed. I am also using these new opportunities in the ‘REAL WORLD’ to help myself, hopefully, overcome these fears to give me more opportunities for advocacy.
A personal journey that has already began through going to Barcelona and taking part in an event where cameras were everywhere… but not in my face. eyeforpharma provided a fantastic safe and friendly platform and ensured we were alright before, and after each roundtable. Both of us had the same social anxiety fears as well so we would go off to our own space every now and again to gather ourselves and discuss our experiences.
I had no way of anticipating the opportunities than we gained from going to the conference and they were all completely unexpected. ~ Carole
Of course! One of those opportunities is the ImPatient Conference London UK in October this year (2018) a brand new type of ‘stand-alone’ pharma conference designed and run by patients, which FibroFlutters stand as key supporters and along with many other people have contributed to the design and agenda. It’s premier is attached to the eyeforpharma 15th Annual Patient Summit ~ London October 16-17 2018
FREE PASS for #Patients who are unaffiliated with pharma business and consultancy.
Fancy going!? all pharma or solution providers who book via me, Carole Scrafton, for the Patient Summit Europe can have the advantage of a €200 discount.
e-mail me: Carole ~ email@example.com
I will be available for the 2 days as a make myself visibile and go and watch whatever I like, listen to whichever speakers I fancy the sound of, or even get the opportunity to sit down and chat to a few other delegates and advocates. Come and find me for a chat!
The Im-patient Conference is new and its bold. No longer is eyeforpharma HQ in the driving seat, instead it is entirely designed, created and hosted by patients. We believe that in doing so, we will capture the true essence of what patients want – and put them in the driving seat
Naturally, we’re really excited
My colleague, Sonia and I are both also hoping to be involved with the Impatient conference, As Founding Five Flutters we are all Key Supporters as well as our group.
#PatientVoice #PatientAdvocacy #HealthAdvocacy #Patients #Pharma
My other role is sitting on a panel discussion, which is something that I never done before, and why I am already mentally preparing myself for what lies ahead.
It will be difficult but I’m sure it will also be fun and I will learn so much again so it will be worth the discomfort to help get the patient voice out there to pharma execs.
Eyeforpharma – Mission statement:
Our mission is to make pharma more open and valued.
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.
A huge thankyou to Paul Simms and his team at eyeforpharma
At a similar time that I got fascinated by what was occurring in the world of pharma I was also engaging within the realms of research advocacy and getting more involved wherever I could.
This led me to apply to become a part of the Patient Research Ambassador Initiative (PRAI), which is part of the National Institute of Health & Research (NIIHR) in the UK. Becoming a PRA has meant involvement in a few NIHR projects and intiaitives but the main one is collaborative live research event that we are helping to create as a group. I helped to intiate the project as a collaborative one, which will hopefully engage people from all walks of life that have problems with fatigue joining in on a Fatigue based event where there’ll be workshops and speakers, a viewing of UNREST by Jen Brea and much more… it is still at design stages but I’m looking forward to seeing how the agenda turns out.
To be allowed to take part in this opportunity is fantastic and hopefully, working alongside professionals and experts to create a new type of conference, which is very exciting and fabulous for support groups, professionals, and general public all across the North East UK not just FibroFlutters.
The idea is to hopefully come away with a conference that can be ran annually, this is a test pilot so wish us luck please!
I passed over my opportunity to take part in the Steering group for this project even though I was key to it’s initiation because my fellow Founding Five Flutter, Ian Foulger, who is ‘our’ expert in this field of illness is better suited for the project.
My expertise lies within the realms of rheumy, musculoskeletal, connective tissue and Fibromyalgia /Chronic Pain Disorders. It seemed silly to not let him do it, of course he is really happy about the opportunity being registered with the local PRAI. Also, to allow me to be free to help with the build up to the eyeforpharma conferences in October.
There are now 3 of us that are registered as patient research ambassadors with NIHR ~ National Institute of Health & Research, including myself, Carole Scarfton, fellow Founding Five Flutter Ian Foulger and also one our Facebook admins, and Benefits system expert, Mark Lawler. #PRAI #researchadvocacy
#patientvoice #patients #notjustpatients
#whywedoresearch #inspiredtogether #patientsincluded #researchambassador #multidisciplinary #patientcentricity #PRAI #D4D #devicesfordignity
#research #healthcareproviders #HCPs #healthcare #socialcare #disabilities #pharma #science #technology #digitalinnovation #communications
A flashback to the beginning
Back in 2014 I was undergoing treatment for severe anxiety disorder and depression through our local Mind Centre in Sunderland. In the year before after a 20 year long battle I was diagnosed with Joint Hypermobilty Disorder with a side of Fibromyalgia. I’d already had confirmation of varying other long term and chronic health conditions.
At this point there was a lacking of support groups for FibroAction, a charity that I became involved with in 2013 and still am today. I was approached a couple of times about the idea of setting up a group for Fibromyalgia so May 12th International Awareness Day for Fibromyalgia FibroFlutters was born under the c/o FibroAction and Sunderland Mind.
This is why FibroFlutters, and myself personally, advocate for the Mental Health Mind Charity, especially our local Sunderland Mind because they have helped me personally to learn how to live with my chronic anxiety & depression and provide a level of support that cannot be doubted or forgotten. I, also, pay a monthly donation to our local Mind Centre.
They are still there for me today if I need them, and it was them that suggested, and then helped me to gain the courage to set up the group because many fibromyalgia patients have anxiety and depression problems that seek advice about local support groups.
There are a good number of people in Sunderland with Fibromyalgia and varying other long term chronic chronic conditions, actually, and it shocked me in the beginning.
At the time I was volunteering and advocating for a charity called FibroAction and so became a voice for the charity across the NE UK with FibroFlutters members, and readers, this is because even though there were only 5 of us but we spanned 3 counties!
I made Vicky Green my Co-Founder not long into FibroFlutters Life as she was advertising us on Face book where i did not wish to have an account, also being diagnosed within months of each other and being friends it seemed a logical thing to do. Along with Ian and Elaine we discussed our helath and circumstances once a month, Sonia works so couldn’t make he meetings but was in touch via social media channels and Vicky. There was 5 of us for about 18 months deciding on things for FibroFlutters and earlier this year I decided that it was time for us to show off who we were.
We are now the ‘Founding Five Flutters’ and together we help to steer the direction of the support group, and also work as individuals on our own interests regarding research and advocacy as we each have differing interests as well as all having Fibromyalgia, ME or CFS, with at least 3 of us also having a connective tissue disorder. Basically we are the old-style board room but with a modern approach.
I am in control of our social media network and I control the whole overall business matters. ~ Carole
In 2015 FibroAction and Fibromyalgia UK (fmauk) merged and became Fibromyalgia Action (FMAUK) Uk so we now work alongside other North East UK groups when campaigning and raising awareness.
As a unity of voice we are louder. 🙂
Charity ~ Fibromyalgia Action UK (FMA UK)
( formerly FibroAction and Fibromyalgia Association UK)
What Is Fibromyalgia?
‘Fibromyalgia is a chronic condition of widespread pain and profound fatigue. The pain tends to be felt as diffuse aching or burning, often described as head to toe. It may be worse at some times than at others. It may also change location, usually becoming more severe in parts of the body that are used most.’
This article has been extracted from the free Information booklet that FMA UK provides. To have this information presented in a professional A5 booklet, as well as the other articles please request one from the office.
This link takes you to the FMA UK website www.fmauk.org
Artistic Works ~ Header images and posters
‘If you’re feeling blue then fluffie cuddles are for you’ – Fluffmeister Extroadinnaire
A post I wrote on a Community Forum that ended up creating a fictional yet lovable character who dishes out fluffie hugs to people that need them. Fluffmeister had friends, and many adventures were had, and games played. My alter ego developed after realising hugging is actually quite painful for fibromyalgia patients due to the hypersensitivity to pain, so giving fluffie hugs was going to be more comfortable. Fluffmeister began life on a HealthUnlocked Forum that I no longer participate in.
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/HSDs 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’m often hanging out with these two:
Gabrielle “Rie” Lopez our Website Co-editor @rieofletters
Sonia Hawkins Founding Five Flutter @Hawkins65S
Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed 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!!
Our Motto for our Fibromyalgia advocacy is:
New Group for Ehler’s Danlos and Hypermobility Disorders
Volunteer Area Coordinators | Company Name ~ The Ehlers-Danlos Support UK
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 it’s own regional Facebook Closed group / community that is specifically for EDS UK members only.
We have quarterly meetings.
Location Sunderland and surrounding areas, temporarily Newcastle and surrounding areas, in the North East UK
This new role is an addition that I share with my co-founding member Vicky as we are both ‘Zebras’ and enabling support for EDS and HSDs was one of the pre-cursers to setting up FibroFlutters properly as a group for chronic, invisible & rare illnesses.
Our roles involve:
- Co-ordinating EDS UK members from Sunderland and surrounding areas, currently, temporarily, including Newcastle as well. Ensuring they have quality meet ups that they want, and help to design.
- Plan and Coordinate any events or fundraisers.
- We are volunteer admins on our local EDS North East Facebook Group for EDS UK.
We will help EDS UK fulfil it’s commitments to the Big Lottery Fund through producing quarterly support group meetings and submitting quarterly reports.
General business / group management and events planning like we already do.
Advocacy, support and advice.
Volunteering for EDS UK is a huge thing for us because our lives are affected by it so much. We will meet some new people and welcome new zebra members to our fold and begin a new era for our group.
We thank EDS UK for accepting us into their fold and look forward to a great relationship.
Our Main FB Page: Fibro Flutters HQ > @FibroFlutters –
A very important tool when battling any chronic illness whether you are the patient, family member, friend or care-giver 🙂
Fun Posts always welcome
Locally in North East England, Sunderland – Tyne &Wear – UK
Online Global Community Network across ‘Social Media Platforms’.
FibroFlutters Information Poster: (Currently being updated, new one will be posted soon)
Find us on:
FibroFlutters Super Highway >>> Our network links
- The links below are in order they were set up over time
- Twitter – @scrufton73 >>> Carole’s account set up March 2014 for fibro campaigning on behalf of Charity FibroAction. Receives posts from fibroflutters.com, Fluffmeister’s FUNdraising Awareness Page
- firstname.lastname@example.org set up April 2014 in preparation for group launch in May
- Google+ > FibroFlutters >>> Set up April 2014 via FibroFlutters e-mail address in preparation for group launch; accessibility from varying sources
- You Tube > FibroFlutters > playlists YOU TUBE set up same time as Google+ in April 2014 channel is empty as not uploaded any videos, however there is an archive of playlists. Have only recently began to utilise it properly.
- Twitter > @FibroFlutters >>> FibroFlutters Support Group for Fibro & MentalHealth account set up April 2014 for Group Launch on May 12th International Awareness Day for Fibromyalgia, Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS)
- Closed Facebook Group > Fibro Flutters Sunderland >>> Closed Facebook group set up in Spring 2015 by a friend in who became my co-founder because she was promoting the group on Facebook for me. Is linked to FibroFlutters HQ Facebook main Page Fluffmeister’s FUNdraising Awareness Facebook Page, and recently formed FibroFlutters – Mental Health Discussion Closed group on Facebook
- FibroFlutters > Website >>> set up May2015 to mark May 12th International Awareness Day for Fibromyalgia, ME and CFS for my support group members to blog and share information as I wasn’t on Facebook for Mental health/social anxiety reasons. Also, posts out to @FibroFlutters and @Scrufton73 on Twitter; FibroFlutters HQ on Facebook, FibroFlutters on Linked In; FibroFlutters and Carole Scrafton on Google+; plus, there is the Pinterest option for readers as well as in house wordpressing or reblogging. Also, accessibility to YOU TUBE sharing. Website is easily accessible from our pages, groups, sites etc
- Main Page Facebook > @FibroFlutters >>> set up in Spring- Summer2015 to make post sharing from blog site better/easier for campaigning, blogging, sharing, advocating and archiving useful articles, research, posts etc. Also, posts out to @FibroFlutters on Twitter and is also linked to FibroFlutters Sunderland closed Group on Facebook; FibroFlutters Mental Health Discussion Closed Group on Facebook; Fluffmeister’s FUNdraising Awareness Page on Facebook
- Linked In > @FibroFlutters >>> Set up October 2015 for Pain Awareness Month but only been using it for last 12 months due to lack of time and chronic illness limitations, but also lack of priority as supporting fellow patients and Advocating for FibroAction and then FMAUK after the merger in 2015 was far more important. Twitter was a better networking platform and less invasive on a personal level. Accessibility via Twitter sharing facility plus FibroFlutters HQ on Facebook, fibroflutters.com, FibroFlutters Sunderland Closed group on Facebook.
Our A5 fliers & business cards for distribution
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
FibroFlutters celebrates being one of the Top-10 Best UK Fibromyalgia Blogs via Feedspot
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 >>>
Final thought! ~ Carole Sian Scrafton (CEO) & Founding Five Flutter
Living with multiple conditions and not knowing what’s a symptom, or side effect, is really frustrating, so for me getting involved with Pharma, and Research, is helping them to eradicate the side effects perhaps! I mean how else can they develop and refine their products / research if they don’t have first hand conversations with those of us that use those products, ie: patients. I am proud to be doing my bit, and so are FibroFlutters members and readers, local and internationally.
Chronic illness Support / Advocacy / Advisory / Guidance / Community / Informal / Online-Global / News-share / Medical Affairs / #NIHRPRAI / #WEGOHealth / Patients Like Me / Savvy /
#patients #notjustpatients #chronicillnessVOICE
#Devices4Dignity / #PatientLeadersNetwork / #PatientIncluded / #PatientVoice / #eyeforpharma / #clinicalresearch / #pharma / #whydowedoresearch / #patientcentricity
Wishing everyone wellness and less pain ♿️ 💜
Got something you’d like to share then please contact us via this form below >>>