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
My Story: Love the One You’re With | By Cynthia Toussaint | National Pain Report | 25 September 2018
The art of mindfulness has become an essential tool in any chronic pain personal ‘toolkit’ of someone with constant #chronicpain. Thinking back to my ‘Pain Management’ Programme sessions, over a decade ago, one of TEAM that ran it was a chronic pain nurse. In fact the programme still runs and she’s still there, which is fantastic news for my fellow chronic pain readers that live locally to Sunderland, UK. Towards the end of each session she would have us all get comfortable and we would have 20 minutes of relaxation and she explained why it was a good thing to try and incorporate it into our daily lives.
It is something that I embedded into my personal chronic pain & illness management plan and now I can meditate easily and I reap the benefits for doing so. It wasn’t so difficult for me because I had been practising some relaxation techniques to help with my mental issues regarding chronic anxiety and depression so it wasn’t difficult for me to develop a routine.
Imputting meditation into your day can take a while because, what time of day suits you?
Do you have family?
When is it the quietest?
What if you never really have the house to yourself?
Do you work?
If yes, do you medidate first thing,
or before bed??
Where will you practise your meditation?
What type of relaxation technique will you try first?
Will you use guided therapy recordings with voice overs?
Where will you source your relaxation / meditation help / guides from?
All things to consider when planning when to slot it into your daily plans.
Reading Cynthia’s post describes the element regarding ‘self-love’, which is something I deem important as I personally believe it helps us to move forwards even when things seem impossible.
Like Cynthia, I was hooked very quickly too and I have been promoting it as a tool for over a decade. A lot of folks might see us as wierdo’s that we do this almost every day, if not every day, thanks to the stigmas attached to wanting a peaceful happy belief in your own life.
I won’t lie to you… It took a while for the people around me to respect my ‘down-time’ and the reason why I did it.
I want a peaceful, happy life… with a lot less pain in it!
Thankyou Cynthia for such a positive and inspiring post.
Commentary by Carole ~ aka fibrofly73
Cynthia writes…
I practice mindfulness meditation most every day and a couple of months ago I pulled up a random video on YouTube. The guide’s subject was “self-love” which, because it seemed obvious, intrigued me. My thinking was, “How can someone not love themself? Why is this something that needs to be learned and practiced?”
Cynthia Toussaint founded For Grace in 2002. It is a non-profit organization headquartered in Los Angeles dedicated to bringing awareness to gender disparity in the treatment of pain. She is also a frequent contributor to the National Pain Report.
You can read a lot more posts over on the National Pain Report website where you can also opt-in for e-newsletters >>>
While practising relaxation and mediatation works for myself and others like Cynthia, we are not saying that it works for ‘everybody’, so I ask you to please remember that finding the right technique that suits you won’t happen overnight. It might take a while for you to find one that suits your own specific needs and lifestyle.
🏆🎆❤🦓💙🦋🎉💜🎆🏆
Starts TODAY
Good luck to all finalists
🏆🎆💜🎉🦋💙🦓❤🎆🏆
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.
Want to know when specific award announcements are so that you can tune in?
The schedule of events below allows you to save announcements etc to your calendars so that you don’t miss the parts that you really want to see.
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 >>>
WEGO Health is a mission-driven company dedicated to transforming healthcare by harnessing the experience, skills and insights of Patient Leaders.
50 Milk Street, 16th Floor Boston, MA 02109
#PAM2018
#storytelling by Gabriel King
What Happens Up Stream Comes Down Stream: The Cause and Effect of the Mental and Physical Connection | Treasures On The Sand | 24 September 2018
Gabriel is a writer, storyteller, and a fellow chronic pain warrior who is the author over atTreasuresOnTheSand.com
He is a chronic pain veteran who is working as a Neurological Rehabilitation Therapist at the Integrated Health and Wellness Center in Fayetteville, Arkansas. I love his writing and in honour of Pain awareness month it would rude not to include him.
I want to continue to bring hope to those still in the fight against chronic pain, lighting the way so that you, too, can find victory. ~ Gabriel King
#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.
Lung cancer cells invading surrounding tissues and starting to spread.Scott Wilkinson, Adam Marcus, National Cancer Institute/Winship Cancer Institute of Emory University
‘The researchers sampled both the primary tumor and about three metastases from each patient. The tumor types included in the study were pancreatic, endometrial, colorectal, breast, stomach, lung, and prostate cancers, as well as melanoma.’
Researchers have been working to understand how Alzheimer’s disease disrupts the growth of new neurons in the brain.maksime/iStock/Getty Images Plus
NIH-funded genome centers to accelerate precision medicine discoveries | National Institutes of Health (NIH)| 25 September 2018
Part of the All of Us Research Program, centers will sequence 1 million genomes.
The genome center awardees were selected based on their proven track record at generating genomic data at scale, providing clinical validation services to verify medically-relevant variants and participating in large-scale research collaborations. The award periods may extend up to five years, pending progress and the availability of funds.
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.
2018-09-25 Researchers report the medial prefrontal cortex calibrates current visual information with previously obtained information to help us perceive the world with more stability, helping to retain visual consistency as we blink.
2018-09-25 A new study reports participating in light physical activity, such as yoga or tai chi, can help to increase connectivity between brain areas responsible for memory formation and storage.
2018-09-25 Researchers report, for those with a genetic mutation that causes Alzheimer’s disease, 2.5 hours of physical activity per week may delay cognitive decline and have beneficial effects on tau in the brain. They speculate the same may be true for those with more common forms of the neurodegenerative disease.
2018-09-25 Contrary to popular belief, researchers report infants who co-sleep in their parent’s bedroom do not experience an increased risk of developing behavioral problems later in childhood. The study reports there are beneficial outcomes of co-sleeping, such as improved child sleep quality and increased prosocial behavior.
2018-09-25 Researchers have developed a new single cell analysis, combined with machine learning, to detect CNVs smaller than one million base pairs. The study reports genetic changes peak midway through brain development.
ARMA Newletter | Arthritis & Musculoskeletal Alliance |September 2018
Harnessing a collective focus to transform MSK services
In this issue
Guest Blog – Adopting the holistic approach | by Professor Anthony Woolf, Chair, ARMA
Webinar: Setting up a MSK Service
Everything you wanted to know about setting up a Musculoskeletal Service but were afraid to ask!
5 October 2018, 12.30 – 1.30
Webinar: Rheumatology commissioning in a community
Commissioning for Quality: Community-based Rheumatology Service
19 October 2018, 12.30 – 1.30
MSK services survey – Please let us know what is happening locally
As part of our Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target our support for improvements.
Link to the newsletter where there are lots of things to read in this issue! >>>
It’s a tool for sharing knowledge and collaboration, an online library of resources. If you know of reports, evidence, guidelines that should be posted, please let those authors and organisations know they can add content.
European Medical Journal | Medical Innovation Updates| 19th September 2018
Take a look into the future of healthcare with the latest EMJ Innovations newsletter.
Articles >>>
Life Expectancy Increased Using Telemedicine | INNOVATIONS | 13 SEPTEMBER 2018
Artificial Intelligence Safe to use in Primary Care Setting | INNOVATIONS | 13 SEPTEMBER 2018
A Transition from Disease-Centred to Goal-Directed Individualised Care of Patients with Multiple Morbidities: A Journey to Goal-Orientated Patient Healthcare by Katarzyna Rygiel
Nanoparticles as Emerging Diagnostic Tools in Liquid Tumours by Ana Sofia Matias et al.
Automated Item Generation: The Future of Medical Education Assessment? by Kenneth D. Royal et al.
“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
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.
#PAM2018
Don’t Punish Pain Rallies | National Pain Report |Ed Coghlan| 20 September 2018
A short but great article by Ed Coghlan regarding the ‘Don’t Punish Pain Rallies’ held around America on Tuesday 18th September that were orchestrated via social media by Claudia Merandi from Rhode Island.
Opening lines:
75 Don’t Punish Pain Rallies held around the country on Tuesday (September 18) were termed a success by the Rhode Island Woman who organized them.
Claudia Merandi, who used social media to promote the events, some rallies had a handful of people and others more than 200.
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
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.
Many thanks for reading our posts and helping to share the news that other folks like you write, or, find.
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