PLEASE NOTE: That myself and fellow FibroFlutters are patients leading a patient support group and a patient led social media network for our advocacy, networking and support services, we are not medical professionals.
Please can you read our ‘Disclaimer’ & ‘Privacy’ notes and if you have a problem we are always open to discussion, just e-mail Carole fibroflutters@gmail.com
WOW! it’s WEGO TIME already, are you prepared for 3 days of virtual celebrations? | WEGO Health Awards Schedule Of Events 26 – 28th September
Well folks it’s that time of year to celebrate being patient leaders, it doesn’t matter if you are a finalist, or not, the work you all do is important and the next 3 days you can celebrate your successess, and mingle, get to meet new people over on FB and on Twitter too.
🏆🎆❤🦓💙🦋🎉💜🎆🏆
DAY 2 ~ Are you ready for more celebrating
Kicking off Day 2 with a Facebook Live at 11 am ET.
Good luck to all finalists
🏆🎆💜🎉🦋💙🦓❤🎆🏆
Well what a day yesterday with some awesome winners who well deserve the recognition and khonour of their prizes.
🏆 Congratulations to all of the WEGO Health Awards finalists & winners 🏆
REMEMBER to check in to be in with the chance to win one of Wego Health’s prize give aways which you can read about how to participate in via this link >>>
PLEASE NOTE: This tool does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Consult your physician before participating in activities described by this tool.
Group Therapy for the treatment of #fibromyalgia & chronic #pain | BARMAC51| 27 September 2018
Opening Paragraph:
‘You read something new every day on treatments for #fibromyalgia and chronic #pain, but now they are saying that group therapy can help pain sufferers. A trial published in the Lancet, revealed that after only six sessions of group therapy, it showed patients still found improvements a year later.’
Group therapy for a very long time was very daunting and off-putting for me, but then again once upon a time if those words got uttered it meant they were sending you to pyschotherapy. I’m not joking either!
When I was in my early twenties I was classed as having a borderline personality disorder but no-one told me, I just happened to see it in my medical notes during a routine trip to the GP. Naturally, seriously offended and heavily insulted because all I wanted was someone to believe that I was in pain. Instead they gave me a mental health disorder that I now have to live with the stigma of because it’s in my medical records!
Not only that they spent at least 15 years telling me it was all in my head, I mean no-one is going to partake in therapy, which is condescending! I have ended up with chronic anxiety disorder as a result, depression and it wouldn’t surprise me if I probably have a BPD now especially after how my marriage has affected me.
Nowadays, believe it, or not, it is lot different thankfully as Barbara shows us in this post, and group therapy for pain means something completely new. Mixing with other people like yourself but in a less clinical format lessens the stress a person feels so it is going to reduce your pain levels and the study that Barbara speaks about will hopefully continue to prove it.
Sadly, I don’t think I’ll ever shake the stigma over my head even though that was 20+ years ago. Every hospital appointment it is part of my history that consultants read and because they have to they include it when assessing me. It can be damaging to patients especially our self-worth to be repeatedly judged on things like that from 2 decades ago.
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trade mark.
#PAM2018
#disability #disabilitynews
Disability News Service (DNS)
A great site for health and disability news
Disability News Service (DNS) is run by John Pring, an experienced journalistwho has been reporting on disability issues for nearly 20 years.
He launched DNS in April 2009 to address the absence of in-depth reporting in both the specialist and mainstream media on issues that affect the lives of disabled people.
The International Standard Serial Number for Disability News Service is: ISSN 2398-8924
#Neuroscience #neurology #neuroscience
Neuroscience Newsletter | 26 September 2018
Enjoy our latest Neuroscience News updates from the last 24 hours. You can read the full articles by clicking on the headlines or the links embedded in the summary.
2018-09-26 According to a new study, practicing mindfulness can have beneficial effects on both parents and children. The study reports parents who practice mindfulness have better control of their emotions, which helps them to apply consistency and encourage their children. Children showed improvements in social skills and a decrease in negative behaviors when interacting with others.
Pain Education for Doctors, Chronic Pain and Resilience What can be done to implement better pain educaiton for doctors, patients and parents, and trusting your pharmacist when in doubt.
From e-mail: Production Team, Pain Concern
This edition is incredibly informative, focusing on the gaps in pain education that are present in the UK, which is why we thought your organisation would be interested.
The programme will cover the Essential Pain Management Course, research into patients’ expectations of pain management, and parent appraisals of injustice when their child has chronic pain.
Adam
Broadcast Assistant
Pain Concern
PLEASE share and help us to join in raising awareness for chronic pain through the use of education like this latest ‘Airing Pain Podcast’ which is aimed at medical professionals and everyone #notjustpatients
~ Many thanks Carole Sian (CEO) Co-Founder FibroFlutters
106: Pain Education for Doctors, Patients, and Parents
Registered Office: Unit 1-3, 62-66 Newcraighall Road, Edinburgh Eh15 3HS Company Limited by Guarantee, Registered In Scotland No: 546994 Scottish Charity No: SC 023559
“PatientsLikeMe is the world’s largest personalized health network that helps people findnew treatment options, connect with others and take action to improve their outcomes.”
I am Proud to be a member and Ambassador of
@patientslikeme, the world’s largest personalized health network helping 600,000+ people with 2,800+ conditions find new options for treatments, connect with others and take action to improve their outcomes.
A chance to change the future of personalized health.
Very soon PatientsLikeMe.com will have their own spot on the website where you will have access to the links to their community as well as their news and information. ~ Carole
#PAM2018
#NeuroendocrineCancer #NETS
RonnyAllan.NET – Community Newsletter Covering August 2018
Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.
Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!
If you like what you read PLEASE remember to share and opt-in
Only 3 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there?
I can’t believe how time has flown past and the conference is only a few weeks away. It is really exciting to be involved and helping to collaboratively bring about changes within the world of medical healthcare.
Helping to close the gap between pharma and patients and increase relations, encourage collaborations and stave off the ideas that patients can be manipulated.
Thanks to eyeforpharma’s regard towards Patients, ‘Patients Included‘, and giving us a platform to share our patient voices, and our input during roundtables and panel discussions at their pharma conferences we can help pharma improve the products and services they make. Help improve patient engagement programs / or, PSP’s Patient support programs between pharma and patients in ways that improve service design, product and service quality using collaborative methods and utilising all stakeholders to produce end results.
Will patient-centricity win-over pharma in London, how are companies becoming patientcentric, which companies are trying to be patientcentric?
Is patient- engagement working for pharma, what isn’t working? It can’t all be perfect!?
How is the concept of ‘Patient-engagement’ progressing is it proving to be useful, or does it need to be reassessed as a tool?
Innovation is also hot-topic as new ways of producing things have developed, including the use of AR, VR, AI, 3D printing and robotics to help improve surgical procedures, general medication delivery systems and even new bones and not that long ago even skin tisue, for a few examples.
Also, the different new ways that innovation is assisting clinical research and especially biopharma, health education videos for hospitals and HCP’s, and much more from the world of digital. Will we see some of that in London within the innovation, science and technology sector of the conference?
Of course aside from the World of Medical Affairs is the Impatient Conference and the part of the journey where we really do hope to make a difference. It really has been designed by patients and the hope is that we can help bring patients and pharma closer together at this Pharma & Patient Co-creation event.
How are pharma increasing patient relations, are they rebulding our trust yet?
How will we as patients convince pharma to make the necessary changes required to rebuild their pharma-patient relations?
What does pharma believe it should do? Do we as patients agree with pharma? If not, how do we compromise so that solutions can be formed and progression can continue. Otherwise this time next year we will still be discussing it!
It’s time for pharma to stop ‘saying’ and start ‘doing’, be more proactive and begin to move forwards.
Patient Summit Europe 16-17 October 2018, London UK
Europe’s Top Pharma & Patient Co-creation platform to attend in 2018
“If you don’t partner, patient centricity will never become more than just an idea.”
250+ attendees
40+ speakers
15+ case studies
20+ roundtable discussion topics
Including >>
The Im-patient Conference which 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.
Follow this link to see who is attending and register to join us >>>
Join the most forward-thinking meeting of leading marketers in Europe and learn to:
Redefine HCP relationships Develop a deeper educational partnership with your customers and transform engagement
Embrace digital. Be the future Implement a digital-first communication strategy for effective and efficient customer interaction
Educate to innovate Eliminate fear of innovation by empowering your workforce with the capabilities needed to form lasting HCP relationships
Deeper insights, real value Analyse data for actionable insights that result in a better understanding of patient needs and position you as a trusted presence
eyeforpharma Editorial Disclaimer
The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.
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.
Awareness Campaigns
Got a campaign you’d like to share, drop me an e-mail, Carole at fibroflutters@gmail.com
Fundraising to raise £20,000 for Fibro drop-in centre | Rock Off Fibro ~ Fibromyalgia awareness
Quoted from Just Giving page:
“Weʼre raising £20,000 to Help fund the opening of the UKs 1st Fibromyalgia, drop in center to drive our work forward helping those with Fibro , Ptsd , Chronic pain”, Jackie Williams ~ Rock Off Fibro, Fibromyalgia Awareness
Please can you help such a worthy cause, patients are trying to help other patients?!
Every morning and evening I was posting several links to a variety of online newspapers and thought that maybe I could post from here via newsletters, our website/blog, instead.
This is to ensure that all the news and stories go out to everyone that follows us across the social media platforms that we have profiles/accounts.
There’s a few links to my favourite online newspapers for finding a variety of health related news from other Chronic Illness Bloggers & Warriors, for up to date news about health conditions such as latest research papers or people sharing hints and tips about how they cope day-to-day.
Let us help them by showing our support by sharing the news and stories that they share.
If you publish a health related paper.li or other health news magazine/paper that isn’t listed and you would like it to be, please contact me – Carole Sian at fibroflutters@gmail.com or use the form below and let me know, always happy to help 🙂
FibroFlutters continuously
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!!
Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.
Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!
If you like what you read PLEASE remember to share and opt-in
FibroFlutters – Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK and offering online support via our social media network across the globe.
PLEASE NOTE:We are not medical professionals nor claim to be, and remember that you should always consult your doctor about any health problems and not use Dr Google, or rely on information that you may read online through 3rd parties.
![FMAUK SUPPORT GROUP LOGO WorkingWith-200_100[1]](https://i0.wp.com/fibroflutters.com/wp-content/uploads/2015/09/fmauk-support-group-logo-workingwith-200_1001.jpg?resize=274%2C137&ssl=1){kind=logo}
