HUGE Thank you | MILESTONE |FibroFlutters-Online now has a combined social media following of approximately 2000

FibroFlutters is celebrating reaching a milestone and we Thank you, our followers all across social media for helping to make it happen.

It’s that time of year when I start to reflect back across the years activity on social media, yes! I’m talking about which topics are liked or not, how many people are using which of our profiles, where do I need to update etc.  I usually use hibernation time to tidy things up but I’m away for the Christmas holidays so unsure how much of anything will get done 😉

One thing my period of reflection taught me was that FibroFlutters is developing into differing sectors within itself resulting in the following:

FibroFlutters – Sunderland >

  • The original support group set up in 2014 for people with fibromyalgia which has developed over time.
  • My colleagues and other advocates – Vicky Green / Elaine Hanson / Ian Foulger/ Sonia Hawkins. Together we are The Founding Five of FibroFlutters as we worked together throughout and by ourselves to develop FibroFlutters into where we are today.  As a group all members are advocates.
  • We are now a Community Support & Advice group that also advocates for chronic / invisible illnesses including Fibromyalgia; Chronic pain; CFS/Me; HMS/EDS HSDs; musculoskeletal disorders; bowel/gastric /digestive; gynae; Mental Health + others like on our cover picture.
  • Fibro Flutters Sunderland provides people with multiple health conditions chronic / invisible with an opportunity to meet as a support group, informally, once a month but also make ourselves available in between meetings as well because life with chronic illness throws distress on us regularly.
  • We discuss all things including the latest research and gadgets and possible new treatments/medications, alongside taking about how we’re feeling and what we’ve been up to. 
  • We also discuss charity and advocacy related projects and we also help our sister FMAUK group with their fundraising campaigns when we can, and they help us too.  Sunderland Fibromyalgia support group, which is predominantly a group for Fibromyalgia, is a fantastic friendly and supportive community.  Find our Sunderland sister group on Facebook > Sunderland Fibromyalgia support group

 

 

Got a condition you wish to be added to our Cover image then please let us know for our next image update.

fibroflutters@gmail.com

 

FibroFlutters – Online Community Support & Advice group > 

FibroFlutters ONLINE Community support group is managed by a small group of people, ‘The Founding Five’ and a few others, that work together as a team to ensure that our members get the information they need, or be able to point them in the right direction.  

As an online community/network we advocate for chronic / invisible illnesses including Fibromyalgia; Chronic pain; CFS/Me; HMS/EDS HSDs; musculoskeletal disorders; bowel/gastric /digestive; gynae; Mental Health and many others like the ones mentioned our cover picture.  (See header picture of this post)

We are celebrating because we now have a combined social media following of approximately 2000 across several social media platforms reaching out to people with #chronicillness & #invisibleillness all across The Globe.

Through necessity for improving communications for ourselves we have accidentally created an avenue of communications via social media platforms.  This avenue of communications is where patients, care-givers; friends; medical professionals; non-medical professionals; medical organisations / charities, can all have a voice. 

FibroFlutters now has a Social media highway connecting us from one platform to another on and offline members can easily find us because not everyone is on Facebook or Twitter which is why this blog site was originally set up.

 

Between all of us we manage to use our Social media highway for raising awareness, fundraising, sharing hint and tips, connecting with others, advocacy for charities and causes relevant to chronic / invisible illness. 

Remember that we are also supporting, caring and advising each other as patients/illness-bloggers; carers; friends; family; whilst sharing information we find from and with all other industries and sectors of medical health including developments in science and research papers/opportunities.

Find us on the following links:

 

FIBROfLUTTERS LOGO ON WHITE PHOTOTASTIC

We couldn’t have done it without you, our followers and supporters, helping us to develop, and, widen our connections via social media sharing facilities. 

Of course, without the development of social media giving us the ability to share across platforms our network would not have been as successful. 

Now it is even easier to share with each other, other groups and organisations from across all industries connected to medical health care, pharma, AI, science and technology and research building a network of communications between fellow #patients making sure they hear about all aspects of chronic/Invisible illness.

As a result our #PatientVoice is becoming louder each day bringing us closer together with health care providers (HCPs), research centers/academia, Science & Technology, AI – Artificial Intelligence and Pharma. Our communication avenues are growing and are large in some places, smaller in others because not everyone is on Facebook or Twitter with some only just new and developing.

Our vision of a multidisciplinary approach to medicine and healthcare for chronic illness is happening all around us in each sector/industry connected to medical health care  now working on #patientcentricity #patientcentric; #patientincluded; #patientinvolved  putting us, the patients, at the heart of their strategies and work systems.

It is up to us to be #inspiredtogether and remember #whywedoresearch and step up to become an integral part of the changes that will be happening.

We have shouted it LOUD for changes to be made, now we are getting them, but our battles do not stop here.

We are needed to help them with #research across all industries and there are many ways that we can do that. Getting involved with the right organisations such as NIHR (National Institute of Health & Research) to sign up for initiatives such as PRAI – patient research ambassador initiative which gives you a variety of ways to get involved.

Click the link to find out how to get involved I have already met with our local rep from NIHR, Cumbria and North East, to discuss how myself and FibroFlutters can help and am already looking forward to getting involved ii future projects.

https://www.nihr.ac.uk/…/how-…/patient-research-ambassadors/

Communications with companies such as ‘eyeforpharma’ and ‘pharmaphorum’ bringing companies together and creating #EFPpatients, for instance, helping us stay informed as patients as well as work to build relationships between pharma and HCP’s. They understand how important patients are to them and their progress for change.

AI and science/tech are also building communications networks between industries, plus ways to interpret data/results as well as creating new gadgets for the #disabled.

We have all worked together to share these differing kinds of information from each others areas of life, and we do help to educate each other about a lot things, so please be proud of how you’ve helped even if you’ve only shared or liked one post it has contributed to the cause.

Many thanks everyone and go on….
… take a look at PRAI it may interest you!

Carole Sian
Wishing you all wellness

Elaboration of post on  Facebook MILESTONE

Facebook post – MILESTONE reached > 2000 followers

Further reading/ Other links:

ONLINE COURSE
Improving Healthcare Through Clinical Research via Future Learn

On this free online course, find out how medical treatments are discovered, tested and evaluated to improve healthcare for all.

www.futurelearn.com/courses/clinical-research

 

eyeforpharma logo

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.

eyeforpharma – About us
‘Our mission is to make pharma more open and valued.’

About us – eyeforpharma

eyeforpharma: Patient Policy
By Paul Simms, Chairman, eyeforpharma. Updated August 2017

eyeforpharma – patient policy

“The pharma industry exists because patients exist. So there is increasing recognition that understanding and communicating with patients is vital.”

Article from eyeforpharma: Redefining Medical Need –  

Opening line

“To truly understand unmet medical need, we need to stop focusing on the disease and start talking to patients, says Allergan CMO, Gavin Corcoran”

 Article from eyeforpharma:  Meet AI, The Doctor’s New Best Friend

 

Opening line

“AI insights will transform the HCPs practice in more ways than one, says Teva SVP Markus Leyck Dieken”

 

Article from Pharmaphorum’s magazine Deep Dive:

PATIENT SUPPORT: balancing technology with the human touch

pharmaphorum – deep dive > patient centricity march 2017 patient support balancing technology with the human touch

Pharmaphorum bringing healthcare together > pharmaphorum.com/

 

Article from Pharmaphorum’s magazine Deep Dive:

Patient engagement:  benefiting the whole of society

pharmaphorum – deep dive > patient centricity March 2017 patient engagement benefitting the whole of society

Pharmaphorum bringing healthcare together > pharmaphorum.com/

 

National Institute for Health and research (NIHR) (NHS) – Patients and the Public:

How to join in  > www.nihr.ac.uk/patients-and-public/how-to-join-in/

There are many opportunities to get involved in health research. Many of these are advertised through the website People in Research. Other ways of getting involved are shown below. Join us to help ensure that the research we invest in is relevant, reliable and useful.

AI, Science & Technology

Futurism You Tube – Breaking: Scientists Create An Artificial Womb