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
EverSleep Wearable Sleep Tracker: Product Review and Interview with CEO |MICHAEL BATISTA| Medgadget | 21 September 2018
This is a wearable that I know many will want to try so that they can monitor how poor their sleep is. “Why?”, some of you ask??, well the answer is fairly straight forward to be honest and easy for all stakeholders to understand #notjustpatients
It must be noted that…
Patients with #chronicillness more often than not suffer with some type of sleep problem that more often than not causes other health problems, or #comorbidities such as #fatigue, #cognitiveproblems, enhances a patient’s #pain and #symptoms, interferes with the abilities to do the simplest of tasks.
You will read everywhere how we battle daily on little, or no sleep at all. Going to the doctors and explaining we have sleep problems and the answer is always ‘amitriptyline‘ and CBT, counselling of some form which usually enrages patients because that is like stating it’s all in our heads again. Believe me we hear it so often and it is always offensive!
It is ridiculous really because you would think such problems would receive more attention to detail, and, this ‘Sleep Tracker’ could offer a solution for the problems we have in the consulting room when discussing our sleep issues. For example, my sleep pattern is so erratic and changes all the time.
If I could monitor it I could probably spot correlations to illness flares, or symptom changes, that could lead to better illness management, and also gain a bit more respect in the consulting room regarding sleep.
Naturally, this would apply to all my fellow #chronicillnesswarriors that have disturbed sleep too!
However, this gadget costs money that patients quite likely do not have spare in order to purchase it. If such gadgets were availailable through GP’s then who knows how many improvements and changes could occur?, including improving HCP-Patient relations regarding sleep issues and providing a new solution to sleep monitoring.
Above I highlight how such a gadget could help all ‘chronic’ patients with very simple basic health management.
We should note that EverSleep is a consumer health device and does not have FDA 510(k) clearance.
Thus EverSleep does not claim to diagnose, treat, or cure any disease. Users are encouraged to speak with their doctor before starting any health improvement plan, including sleep.
Read all about the ‘EverSleep Wearable Sleep Tracker’ and the interview with the CEO via this link >>>
Quote from article:
“We help you sleep. It is just that simple,” says CEO and Co-Founder Chris Crowley
Leading question of the interview by Michael Batista:
Michael Batista, Medgadget: What gaps in sleep monitoring technology did SomnoHealth identify that lead to an interest in developing your own product?
At Medgadget we report on the latest medical technology news, interview leaders in the field, and file dispatches from medical events from around the world.
A Passing | Autoimmunity Girl | Trish Dyne | 23 September 2018
A genuine real piece of writing from Trish regarding the death of a fellow warrior with autoimmune chronic health like herself and lives with similarities which is what connected them.
Trish also discusses how no-one ever gets to see what we go through and they could never understand things the way in which as patients we do. She explains about looking at pictures but realising they don’t show the whole story just that snippet of time, and not how the person struggled, and battled, just to get that one moment…
Excerpt:
A smiling picture of chronic sufferer at the beach (or anywhere) shows nothing of the pain it took to get there, the years of suffering and the sacrifices made just to have 5 minutes on a beach and in the sun. It’s merely an image but it is not the real picture… pictures become merely echoes of a life, but are not the real voice.’
An emotional / sensitive read and may be upsetting for some.
My Medical Musings | A Spine Tingling Saga | Sam | 7 September 2018
‘Medically Retired and Living a Life of Faith and Hope with a Rare Disease’
Excerpt:
‘Expectations and tangible outcomes can begin to diminish the longer you live with a particular disease. Especially when all known treatment options have been exhausted.’
DO THE DISCS IN YOUR SPINE ‘SLIP’ ?…| BARMAC5 | BackPainBlog |22 September 2018
Another useful post from Barbara this one helps us to understand what ‘slipped discs’ are, I find this good for future reference and gauging if I have, or not, slipped a disc but suspect it.
Excerpt:
‘Each disc consists of a soft inner part surrounded by a fibrous coating. Sometimes the coating gets torn which allows the softer material to bulge out. The pain when the softer material bulges out can be excruciating and this condition is commonly known as ‘a slipped disc‘.’
BACK PAIN BLOG UK IS A PERSONAL JOURNEY OF A CHRONIC BACK PAIN SUFFERER. MY SITE IS FULL OF THE LATEST TREATMENTS, PRODUCT REVIEWS, THERAPIES, DRUGS, TIPS AND WEBSITES ON BACK PAIN, FIBROMYALGIA AND ARTHRITIC CONDITIONS.
#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
Latest edition!
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
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.
2018-09-19 Researchers report senescent, or Zombie, cells accumulate in certain neurons prior to cognitive loss. By preventing accumulation of these cells, researchers were able to diminish apoptosis, memory loss and tau aggregation.
Neuroscience News 4747 Research Forest Drive, STE 180 The Woodlands Texas 77381 USA
Neuroscience is a multidisciplinary science that is concerned with the study of the structure and function of the nervous system.
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 4 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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