ABOUT US > FibroFlutters
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.
We are a friendly bunch of people who get together, ‘informally’, once a month, every third Tuesday of the month, to share our stories, discuss health issues and current awareness campaigns and projects etc.
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.
I do usually ask everyone to record on the sign in sheet which health problems are bothering them that day and next year will be installing it into my group permanently because it is interesting to look back at them and the trial has shown me that.
I do not gather personal information to pass on to 3rd parties it is used for record and information only
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
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 illnesses aren’t different because we live thousands of miles apart, but how medication policies work are what make it all different depending on whereabouts in the World that you live. The treatments / medications are different from one country to the next. Drug pricing issues and the opioid crisis affecting patients and causing many to take their own lives, which just shouldn’t be happening. People being made homeless and going without pain medications , or other medications.
Here in the UK it is the post-code lottery as to whether some drugs are made available to you and patient’s across our country petition all the time for issues related to it. Campaigning on a Global scale is quite a large mission, but we have done it for Fibromyalgia, MECFS, Lyme, and many more, to get the attention they need and deserve. Campaigns are a fabulous way to help educate others, whether they are patients, or carer’s, family members… even health professionals! and now even pharma!
Education is just as important as campaigning, from all sides of the fence, and #notjustpatients should also be learning in order to keep a balanced progression if they wish to succeed in gaining our trust enough to work with them. Back to ‘old-school and the drawing board for some execs I think. Learning how to do what you already do, using a completely different method, must be particulary daunting, however it is necessary in order for everyone’s final desired incomes to be acheived. Even patients have to learn it too!
Of course this will be using digitalised processes and systems to make a streamlined job of their work and the hope is that the transition into the new World of Digital Health will be a relatively smooth one. It is already upon us all. Let’s face it, how many of you use health mapping apps, or apps that boost your mood and send you memes of positivity. No matter what making the move to utilise and multichannel FibroFlutters was a good one!
HCP’s and nurses have to learn new medical devices that are digital, robotic and general new pieces of medtech.
One key problem that fits under the ‘education’ umbrella and one that often get’s said to me is that they don’t understand all the different jargons, and to be honest who can blame them. This isn’t just patients on meds with foggy brains either!
Time for a ‘new language’ that is versatile and usuable by all stakeholders, universal, and can be used right across the globe. It should help reduce a lot of ‘mistakes’, and, ‘misinterpretations’ I would think, and possibly end up preventing so much by means of wasted resources and maybe even generate / drive more sales, patient interest and really does sound like a solution. However who will do it? How much to invest in it? big questions with no answers, yet.
Many don’t even seem to think a new language is necessary, well here at FibroFlutters we do!
It took me 2 months of researching to spot that all stakeholders were working on these patient centred processes and work models while I’d been designing a ‘Multidisciplinary Medical Centre’, which would be utilised by all stakeholders so that patients had access to them all and our data was kept in one place and accessible to all parties. Completely unawares.
I mean honestly, I was so involved in building the infrastructure of FibroFlutters so that we had a proper communications system across all the social media platforms. Not everybody was on Facebook, or twitter, in fact some didn’t even have e-mail access due to not affording a computer, or the internet bill.
Little did I know what was happening outside my work-window!
Naturally I have steered FibroFlutters into the middle of all the stakeholders as if to draw them in towards us, and it is working too.
Encouraging our members / followers /readers to view themselves as patients is proving difficult in fact and I am under the impression that we don’t like it very much. I know I don’t like it because I’m a patient 24/7 and don’t need titles to remind me of that fact. Everyone has a reason of sorts for these things, but the one to blame is that change scares people, the threat of change scares people, even though they shout for it.
Pharma want to know us better!
Being connected to all stakeholders, and welcoming everyone to our network #notjustpatients is a way to show that we can communicate with each other. If it is possible share that then collaborative work should also be possible, which of course is all within our efforts to prove that a multidisciplinary approach to our healthcare is a viable and much-needed request from chronic patients with multiple conditions, and co-morbidities, or multi-morbidities.
The best way to get connected is to join in!
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 achieve 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 patient-centricity, 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 they are 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 >>>
- 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
#patientvoice #patients #notjustpatients
#whywedoresearch #inspiredtogether #patientsincluded #researchambassador #multidisciplinary #patientcentricity #PRAI #D4D #devicesfordignity
#research #healthcareproviders #HCPs #healthcare #socialcare #disabilities #pharma #science #technology #digitalinnovation #communications
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 who 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/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’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:
STRUT YOUR STRIPES
New Group for Ehler’s Danlos and Hypermobility Disorders / HSD’s
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 its own regional Facebook Closed group / community that is specifically for EDS UK members only.
We will have quarterly meetings once up and runnin properly..
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 HSD’s was one of the precursors to setting up FibroFlutters properly as a group for chronic, invisible & rare illnesses. However Vicky is taking a motherhood sabattical for now.
Our roles involve:
- coordinating 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 its commitments to the Big Lottery Fund through producing quarterly support group meetings and submitting quarterly reports, when the group is off the ground.
- 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) still working on it!
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.
- 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 & Mental Health 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 May 2015 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 re-blogging. 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
#PatientExpert #WEGOHealthExpert #PatientLikeMe Ambassador
#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 >>>