ABOUT US > FibroFlutters
FibroFlutters is a support group based in Sunderland, North East, UK & is there for people with Fibromyalgia, Me/CFS, Chronic illness, Chronic Pain, EDS/HMS & other #invisibleillness.
Our wish 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 Chronic/Invisible Illneses.
We also have many other groups/pages/profiles across social media to help spread awareness of each illness and appropriate charities.
The aim is to support the fundraising efforts of the charities 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 in the hope that one day a group of scientists will say ‘I’ve cracked it all we need to do is…..’
Our Motto is:
We all live in hope, and we all know that without faith and hope there is no positivity. We all share the pains and discomfort of illness but recognise the time to hold out a hand to help others sometimes who may need it more 🙂
We hope to share as much useful info, articles, research, polls, campaigns and real-life stories to help make us stand out visible and educated about our #chronicillness #fibro #Me #CFS #EDS/HMS #ChronicPain #invisibleillness
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’.
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.
We currently Advocate for :
Charity – HMSA (currently informally as non-members)
Charity – Sunderland Mind Centre (Our Host)
Charity – Mind
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 (currently informally as non-members)
Charity – Pain Concern (currently informally as non-members)
Charity – Arthritis UK (currently informally as non-members)
Charity – Action for ME (currently informally as non-members)
Charity – Scope (currently informally as non-members)
More to be added
Chronic illness Support / Advocacy / Advisory / Guidance / Community / Informal / Online-Global / News-share / Medical Affairs / #NIHRPRAI / #WEGOHealth / #Devices4Dignity / #PatientLeadersNetwork / #PatientIncluded / #PatientVoice / #eyeforpharma / #clinicalresearch / #pharma / #whydowedoresearch / #patientcentricity