#chronicillnessVOICE | 12 November 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

A selection of online health related newspapers/magazines/newsletters/blogs/events


Good morning from FibroFlutters, wishing you all wellness as always and a fabulous week


Thank you for your patience during this last few months, or so, whilst I have been moving house and dealing with big life-changes.

Enjoy the updated newsletter after it’s break and hope to get back to normality very soon!

Welcome



#patientcare  #collaboration #codevelopment #clinicalsolutions #healthcare  #pharma  

Philips and Augusta University Partner to Improve Patient Care: Interview with Philips CMO |  MICHAEL BATISTA  |  medgadget.com | 6 November 2018

Philips and Augusta University Health are working together in a long-term partnership for the co-development of clinical solutions such as a hybrid operating room.


A great interview with a fab insight into such a developing, ‘co-creative’, partnership between Philips and Augusta University Health.

The boldness of embarking on a ‘new’ and ‘first-time’ project as ‘co-creators’ by Phillips will, hopefully, help to bring about new things such as hybrid operating rooms quicker and with less problems, meaning patients will see new gadgets in hospitals and doctors consulting rooms quicker as a result. Thus resulting in helping to improve Patient Care.

Of course naturally, there will always be things to iron out as time moves on, but hopefully they won’t have too much of that! ~ Carole – own words and opinions


Quoted from text:  Dr. Joe Frassica

“This relationship is a departure from traditional client-vendor relationships and allows for co-creating of clinical solutions. Instead, this is a true partnership where we collaborate to understand Augusta’s needs, and work together to develop a game plan that will enable them to meet their patient care goals.”


Read the article via this link  >>>

Link to medgadget  >>>



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.
© Medgadget, LLC. 2004-2018. All rights reserved. | The Medical Revolution Will Be Blogged.



#Professionals #patients #MSK  #musculoskeletal 

Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | November 2018

Harnessing a collective focus to transform MSK services


In this issue

Harnessing a collective focus to transform MSK services

CEO Update >>>

CEO blog: Mental health and MSK rising up the agenda

Excerpt:

‘Last week I heard a presentation from someone delivering an excellent mental health service, integrated into clinics for long term conditions.’


What’s in this issue?

Guest blog: What is Moving Medicine?

by Dr Hamish Reid, Consultant in Sport and Exercise Medicine, Moving Medicine design and development lead


ARMA’s new strategy for 2019 – 2021

Excerpt:

‘We will work in those areas where collaboration will have bigger impact than any single organization working alone.’



EVENT

Attend the annual ARMA lecture on physical activity


Attend the annual ARMA lecture on physical activity

Taking place on Wednesday 21 November 2018 at 6pm in London.


Hear and debate three perspectives on physical activity at the Annual ARMA Lecture, this year in partnership with Versus Arthritis.

Three outstanding speakers, Nick Pearson, CEO parkrun, Michael Brennan, Physical Activity Programme Manager, Public Health England and Claire Harris, Physiotherapist speak to the theme.



Upcoming webinars
Sign up for these webinars to drive better musculoskeletal health services via the links in the newsletter:

A New way of delivering MSK pain service: Integrated pain assessment spinal service. Tues 20 Nov 2018, 12.30-1.30pm

Supporting people with MSK conditions to be more active.
Fri 30 Nov 2018, 11.00-12.00pm


Missed a webinar?
Watch the videos of previous webinars.

    • Commissioning for quality: community based rheumatology service
      Watch a recording and download the slides.
  • The BSR Rheumatology Choosing Wisely Recommendations
    Watch a recording to find out more about shared decision making and how to use the recommendations.

Check the newsletter for the links


Plus there’s…

  • The first Versus Arthritis campaign
  • New arthritis survey: the Impact on Daily Life
  • HMSA at COP2018
  • Places still available for The PCR Annual Conference
  • No health without MSK health
  • New GBD 2016 UK paper
  • HSE’s ‘Risk-reduction through design’ Award
  • What’s new on the MSK Hub

Link to the newsletter where there are lots of things to read in this issue! >>>

ARMA NOVEMBER Newsletter


Who are ARMA? >>> About ARMA


  • To see previous issues of the newsletter, click here
  • Follow us on Twitter:   @WeAreArma
  • To include items in the ARMA newsletter, please contact us.

Heard about the new MSK Hub ?

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.

FibroFlutters supporting ARMA (unaffiliated)



#patient

Patient.info

Patient Newsletter  | What to eat when you have a cold |  11 November 2018

Main Headline  >>>

The best things to eat and drink when you have a cold

Is there anything that you can do to reduce the chances of catching a cold, or knock it on the head if you’re unfortunate enough to catch one? We take a look at the foods that might help.


Healthy living tips from the experts

  • Are cleaning products bad for your health?
  • How your eyes change as you age
  • What to do if psoriasis is getting you down
  • How to boost your chances of orgasm
  • How to stop your partner from snoring

This week’s recipes:

  • Gluten-free steak and onion cornbread sandwiches
  • Bengali red split lentil dal


Join our mental health forum >>>


Visit the Home Page and register for patient access as well as newsletters >>>



Patient work in partnership with the NHS
© Patient Platform Limited. Registered in England and Wales.
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trade mark.

Patient.info




#alzheimers #hospicecare #carerexperience

Alzheimer’s Reading Room  |  Reminder: My Hospice Care Experience  |  11 November 2018

You can also read the following >>>

  • Artificial intelligence predicts Alzheimer’s
  • Dementia Patients Face Needless Transitions in Last 90 Days of Life
  • Death by Complications from Alzheimer’s, What does this mean?

Follow this link to read the above and much more  >>>


Also….



Alzheimer’s Reading Room



European Medical Journal | 7 November 2018

Reviewing all of the breaking news from the major healthcare congresses across Europe


Today’s headlines include >>>

  • Breaking point: should we be reusing more medical devices? – Verdict Medical Devices Shared by EMJ Reviews via:  www.medicaldevice-network.com


  • Treatment of Chronic Chagasic Patients: Is Killing the Parasite the Only Option? – European Medical Journal  Shared by EMJ Reviews via:www.emjreviews.com



These two above are from November 2nd of emj issue, but I wish to share them for a bit longer!



  • Delaying School Start Times to Boost Adolescent Academic Performance – European Medical Group Shared by EMJ Reviews –  via:  www.europeanmedical-group.com

Plus more, follow this link to read the above and remember to sign up for the daily newsletter  >>>



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Treasures On The Sand | Gabriel King, Storyteller >>>

Together We Fight: Uniting with Fellow Chronic Pain Warriors |  


Excerpt:

‘Combating chronic pain is a fight that is overwhelming when you attempt to go through it alone. You are like a captain without a crew stuck in the stormy sea, wrestling against the formidable waves.’


Read the rest of Gabriel’s post via this link  >>>

Read more of Gabriel’s work via visiting his blog >>>





Longer tenancies would be good news for older private renters | Age UK blog |  Age UK Influencing  |  5 November 2018

Opening paragraph:

‘In July, the Government announced that it was going to look at how private landlords could be encouraged to offer longer tenancies. It has received over 8,000 responses to its consultation paper.’

Read more via this link  >>>


Check out the Age UK blog and opt-in for e-news  >>>



#digitalhealthnews #digitalhealth #AI #analytics #digitalpatient

#clinicalsoftware #sharedrecords #healthCIO  #digitalNHS

Digital Health Digest | 9 November 2018


Headlines  >>>


CLINICAL SOFTWARE | Lincolnshire STP signs deal with Cambio to help predict demand


DIGITAL PATIENT | Review says Babylon’s AI claims lack ‘convincing evidence’


AI AND ANALYTICS | North of England receives £10m boost for AI and digital pathology work


NEWS | Hancock confirms around 500 NHS Digital staff could be axed


CLINICAL SOFTWARE |  NHS Scotland to move to Windows 10 in ‘landmark’ Microsoft deal



Features


story img

FEATURE | The medic aiming for clinically meaningful record standards


story img

FEATURE | Joe’s View: New minister, new vision, new chance to solve an old dilemma?


Upcoming Events  >>>

story img

One London: Linking health and care across the capital

One London was named in May as one of five Local Health and Care Records Exemplar to pioneer linking and sharing records across the capital. Some £7.5m of national money will be matched by £7.5m of local money to achieve this vision at scale in London.


story img

Digital Health Rewired

Digital Health Rewired is the new event connecting health IT leaders with the latest digital health innovations. The two-day conference and expo is delivered by Digital Health, publishers of digitalhealth.net and organisers of the CCIO and CIO Networks and annual Summer Schools.

News just in!

Latest speakers announced for Digital Health Rewired


Upcoming Webinars  >>>

story img

Secure messaging and team based clinical workflow tools for whole health economies


story img

How CaptureStroke enabled Royal Cornwall NHS Trust to increase the quality and safety of Stroke care, saved lives and delivered cashable ROI – Royal Cornwall Hospitals NHS Trust Case Study


story img

The benefits of speech recognition in the cloud at Homerton University Hospital



For a full list of Digital Health events and free webinars click here.



Read the above and more via this link  >>>



Link to their homepage on WordPress where you can read more digital health news and opt-in for newsletters  >>>

www.digitalhealth.net/



Digital Health Intelligence Limited
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Copyright (C) 2018 Digital Health Intelligence Limited All rights reserved. 



FibroFlutters

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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 across the globe
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


 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!!



Siemens Healthineers | November is Diabetes Awareness Month |  1 November 2018

  • This Month: Discover Diabetes Management Solutions from across the Globe
    • Innovative care models for chronic disease management

Read more via this link  >>>


Siemens Healthcare Diagnostics Inc., 
511 Benedict Avenue, Tarrytown, NY, 10591, USA
Phone: +1 914-631-8000 
www.siemens.com/diagnostics
© 2018 Siemens Healthcare Diagnostics Inc. All rights reserved.


An Afternoon of Tea & Cake for the Soul with “There is Always Hope” @pamjessen | Tea & Cake for the Soul – Lifestyle blog | 5 November 2018

An Afternoon of Tea and Cake is a regular feature where I chat to other bloggers, musicians, authors, artists, etc, to find out their thoughts and experiences on all the subjects that I cover on my blog. Today we meet up with Pamela Jessen from There Is Always Hope.

Read the interview with Pam Jessen from ‘There is Always Hope’ via this link  >>>

Visit Tea & Cake for the Soul – Lifestyle blog via this link  >>>



TOP TIPS ON HOW TO FIND YOUR INNER PEACE WITH MEDITATION…  |  Back Pain Blog |  


Excerpt:

‘A basic meditation which you could try for 10 minutes each day is to start by finding a quiet space and sit comfortably with your hands on your lap, keeping your back straight and neck relaxed.’


Read more via this link  >>>

Visit Barbara’s blog to read many other blog posts  >>>



#ArthritisAwareness

Arthritis Foundation


Arthritis Foundation | An Attitude of Gratitude | 6 November 2018

In this issue  >>>

  • Let Us Give Thanks
  • Growing Gratitude
  • Positive Thoughts
  • Show Some Love

Healthy Holidays

Stay Healthy for the Holidays

With Thanksgiving right around the corner, it’s likely you might indulge in a few less-than-healthy foods. Let our experts help you counteract all the treats with our easy weight-loss tips.

Check out their top eight ways to lose weight without dieting


Link to the newsletter >>>

Arthritis Foundation | An Attitude of Gratitude | 6 November 2018

Don’t forget to opt-in for their newlsetters, thankyou 😉



  

Arthritis Foundation | You Can Make a Difference |  8 October 2019

The Arthritis Community Needs You

You understand how seriously arthritis can affect everyday life. That’s why we need you to speak up, speak out, and make your voice heard!

At the Arthritis Foundation, we are making sure that men, women and children living with arthritis cannot be overlooked or ignored. With the support of people like you, we have helped enact more than 70 new laws that make getting arthritis care easier in nearly all 50 states. But we’re only getting started!

As a Live Yes! member, you will:

  • Add your voice to the fight against arthritis through advocacy
  • Have the opportunity to participate in clinical research and disease registries to help find better, more effective treatments
  • Be a resource for those with arthritis so that we can lean on and learn from each other

Through science, advocacy, and supporting others, you will make a world of difference.

So please, join us today  for a minimum of $20


Helpful Remedies for Arthritis

Nature’s Best Remedies | Read more


www.arthritis.org/toolkits/arthritis

© 2018 Arthritis Foundation. All Right Reserved. 
1355 Peachtree Street NE – Suite 600 – Atlanta, GA 30309


fibroflutters mental heal discussion group cover pic


#mentalhealth #pyschcentral

Welcome to your weekly mental health break – Psych Central Newsletter

7 November 2018


Today’s headlines  >>>

  • 5 Ways to Stop Feeling So Irritated All the Time 

  • The #1 Way to Become Less Vulnerable to Narcissists and Sociopaths

  • 6 Polite Reasons for the Rise of the Engagement Photo Shoot (and 1 Irreverent One)

  • Pros of Sharing Fantasies With Your Partner

  • 6 Ways to Get Creative with Meditation

News & Views  >>>

  • Brain Imaging Study IDs 3 Types of Depression

  • Study Finds Superheroes More Violent Than Villains

  • Treating Phobias with Each Heartbeat

  • First Impressions Can Be Influenced by Body Shape Stereotypes

  • Happy Childhood Memories Linked to Better Adult Health

World of Psychology

  • How to Use the End of Daylight Savings Time to Benefit Your Relationship
  • There’s a Psychiatrist Crisis in America That Few Are Talking About
  • Could Your Child’s Little Quirks Be Signs of OCD?
  • Understanding the Female Psyche in Light of the “Me Too” Movement
  • Making Mondays Easier and Much More Enjoyable

Best of Our Blogs

  • How Do Self-Fulfilling Prophecies Happen?
  • Creating a Holiday Season That’s Meaningful for You
  • The Shock Value of Compassion
  • 7 Strategies to Try When Your Relationship with Exercise Is Unhealthy
  • I Think, Therefore I Fidget

Join Our Community

Psych Central’s 250+ support groups are available 24/7 and filled with compassionate, caring people — just like you!
Join and share with over 500,000 fellow members today.


Listen to This If You’ve Ever Dealt with Regret, Fear or Grief
Gabe listens as Michelle warns about living life in fear of danger. Michelle listens as Gabe discusses delivering the eulogy for a man he didn’t particularly get along with when he was alive


Ask the Therapist

    • Social Media Addiction
    • Running Down the Hallway, Again & Again
  • What Is the Best Therapy for Trauma Issues?

Check Out Our Support Groups!
Looking for others to chat with about your anxiety-related issues, treatments or symptoms in a safe, secure environment?

Check out our support groups:


Read the above posts via this link  >>>


Visit the website for more posts and select to opt-in for their newsletters  >>>

psychcentral.com/



Copyright © 2018 Psych Central, All rights reserved. 
Our mailing address is: 
Psych Central
PO Box 5464
Bradford
MA 01835

CERTIFICATE OF COMPLIANCE Psych Central is in compliance with the HONcode
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THANKYOU FOR YOUR PATIENCE AS WE WORK ON IMPROVING THE WEBSITE

It is taking longer than anticipated due to ill health & moving house!




In the Chillout Lounge!

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 

By  Meditation and Healing |  8 September 2018

Psst!  It’s at the end!!



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 




Better late than never!

#NeuroendocrineCancer  #NETS

RonnyAllan.NET – Community Newsletter Covering September 2018

ronnyallan.net/2018/10/01/ronnyallan-net-community-newsletter-covering-september-2018/

International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping NET Patients



Are you a #DisabilityGameChanger?

Scope | The fight for equality |  11 October 2018

Being a person with varying debilitating problems I am classed as being disabled.  I don’t look particularly disabled and I have the capacity to get on my feet and move around.  However, the excessive level of joint hypermobility, dreadful balance and coordination and vertigo make me a bit of a liability when walking around.  I use walking stick sometimes one, sometimes two, or I have my electric power chair for getting around town in.

There is never a time when I go out that I don’t come across some form of discouraging and negative incidence, whether it is just a simple sneer from someone when they see me stand up, or climb out of the wheelchair to walk to the Ladies bathroom, to the people who just plain and simply can’t accept that not all people who are disabled are paralysed.  I’m not bad-mouthing those who are paralysed because they come under just as much unfairness and scrutiny which is why this campaign by SCOPE is so important.

It is time that we were experiencing better fairness and equality, in fact it is well overdue, yes, naturally I’m biased about that but at least I can acknowledge the problem and stand up and fight for the cause.  Not just for myself but for all the FibroFlutter followers and supporters out there who also need this to happen.

Workplaces need to be better equipped, employers need to be educated, but most of all the Government shouldn’t just recognise our issues but start doing something about them.

Please join me and 5000 others, sign up to become a #|DisabilityGameChanger and help SCOPE to fight inequality for the disabled

If you want to talk to others and share your experiences JOIN their Online Community, which is a friendly space for disabled people, parents and carers to talk to others with similar experiences

Thankyou for reading ~ Carole

Thank you from Scope to Carole for being #DisabilityGameChanger

Visit Scope:  www.scope.org.uk/

canstockphoto0775599



Scope is a registered charity number. 208231. Registered as a company limited by guarantee number. 520866 (England & Wales). Registered office: Scope, Here East Press Centre, 14 East Bay Lane, E15 2GW. VAT registration number 805 1569 39
Copyright © Scope 2018



COMING SOON!

Me adressing the floor with my messages for pharma

FibroFlutters supporting eyeforpharma as #PatientAdvocates  #PatientVoice

Look out for our report following our jaunt to the eyeforpharma Patient Summit 16-17th October to read all about the conferences and our experiences:

Patient Summit Europe  incl. ‘Im-patient’ | use the hashtags ~ 

#impatientconf & #efppatient 

Meanwhile, why not take a peek at the eyeforpharma Awards & Barcelona conference for March 12th – 14th 2019 where once again I will be participating in a panel and roundtables, sign up and I hope to see you there.

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.

social.eyeforpharma.com/about-us

Patients Included

eyeforpharma Patient Policy ~  social.eyeforpharma.com/patient-policy

Get the latest industry insights in your inbox:

social.eyeforpharma.com/
Follow eyeforpharma on Twitter:
www.twitter.com/eyeforpharma
Like eyeforpharma on Facebook:
www.facebook.com/eyeforpharma
Subscribe to eyeforpharma youtube channel:
www.youtube.com/user/eyeforpharma


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 logo



#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.

Read more Disability News Service – About us

On Twitter:  @johnpringdns


Visit the website to check out their latest disability news >>>


Headlining today on Disability News Service (DNS)>>>

Readspeaker Tool enables you to listen to the articles


Looking down on an audience watching a man on a stage, with the man also on a big screen above the stage



Esther McVey speaking in the House of Commons



The International Standard Serial Number for Disability News Service is: ISSN 2398-8924


#Neuroscience #neurology #neuroscience

Neuroscience Newsletter |  11 October 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.



Pacifiers Not to Blame for Common Speech Disorders in Kids
2018-10-10 
Summary: Contrary to popular belief, researchers find no significant link between common speech disorders and the use of pacifiers or bottles in small children. Source: University of Sydney. New University of Sydney research shows bottles, dummies, and thumb sucking in the early years of life do not cause or worsen phonological impairment, the most common […]

Why Some Are More Prone To Depression Than Others
2018-10-10
A new study reports people may be able to avoid depression, even if they have a genetic predisposition to SAD, by maintaining or boosting serotonin levels throughout the year.

Gene That Makes Gentle Touch Feel Painful After Injury Identified
2018-10-10 
Researchers report the PIEZO1 gene may be responsible for tactile allodynia, a reaction to injury that makes normal touch feel painful.

Link Between Gut Flora and Multiple Sclerosis Discovered
2018-10-11 
A new study reports T cells are activated in the intestines and migrate to the brain, causing an inflammatory cascade that may lead to multiple sclerosis. Researchers say the gut microbiome may play a more significant role in the development and progression of MS than previously believed.

Thinking Outside the Box: ADHD Adults Not Constrained in Creativity
2018-10-11 
Adults with ADHD feel empowered performing creative tasks that can help them with a job, researchers report.

Thalamus Wakes the Brain During Development
2018-10-11 
Researchers have discovered the thalamus plays a crucial role in the development of normal sleep and waking states.

Researchers Unexpectedly Reprogram Mature Neurons in Mice
2018-10-11 
Researchers have made a surprise discovery that could help provide treatment options for a range of conditions from Parkinson’s disease to depression. Researching how to transform supportive brain cells into neurons, the scientists unexpectedly transformed mature inhibitory striatal neurons into dopamine producing neurons.

New Technique Could Detect Lyme Disease Weeks Before Current Tests
2018-10-11
Researchers have developed new techniques which are able to diagnose Lyme disease bacteria weeks sooner than currently available tests.


Neuroscience News |  Neurology  |  Robotics |  Psychology  |  Submit News
Neuroscience News
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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.





girl reading a newspaper
Photo by Kaboompics .com on Pexels.com


UPDATED LIST

paper.li newsletters have also My favourite health related paper.lis and they update themselves.   The list includes >>>

DAILY| European Medical Journal

The Patient Registry  |  Daily News & more on patient registries and their impact on healthcare today

A WEEKLY paper | The Receptive Sound Therapy Daily

DAILY! | PHARMAGEEK NEWS, le Journal 

The Immunology  | DAILY!

TWICE DAILY!   |   News from Focus on Disability 

DAILY! | Above The Fold in Healthcare is out!

DAILY! | Brainless Blogger News

DAILY!  The Chronic pain  Support from Coach Amber Rose 

Updates every couple of days!  The brain and mental health voice is out! | selection by Valeria Duflot 

Twice Daily! |  Fibromyalgia ME Chronic Pain is out 

TWICE DAILY! | Life Chronic Pain & Autoimmune Systemic Diseases & Dementia® 

TWICE DAILY! | News from UK Care Guide 


Don’t forget! if you like what you read, share and opt-in for their e-newsletters!!

 About paper.li  |   paper.li/introduction.html




“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.

Join for free on PatientsLikeMe.com!

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

ronnyallan.net/2018/08/31/ronnyallan-net-community-newsletter-covering-august-2018/

International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping NET Patients



JUST A REMINDER! 


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




patient header 2PAINT


Read all about this very soon in my post conference review!

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.

(Opinions are my own)


#pharmanews #eyeforpharma #pharma #tech #EVENTS #ai #digital #patients

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  >>>

#efpPatient Patient Summit Europe


Come and see me take part:  17:00 – 17:40 (Day 2)  17th October >>>
Panel: Candid patient perspectives on the good, the bad and the ugly of service design


Other panelists:
  • Teresa Ferreiro | Patient Advocate
  • Trishna Bharadia | Patient Advocate | eyeforpharma Award Winner
  • Paola Antonini, MD, PhD | AISC Scientific Committee Member, Head of Clinical Research & Training Initiatives | AISC

Moderator:  Paul simms | Chairman| Eyeforpharma



  • How do patients really experience pharma’s services?

  • Can pharma better build trust with patient communities to develop productive collaborations?

  • Innovation is supposedly the ‘silver bullet’, but where do patients really see the opportunity for change?

#efpPatient Patient Summit Europe

Maybe I’ll see you there ~  Carole Sian

Patients Included

eyeforpharma Patient Policy ~  social.eyeforpharma.com/patient-policy



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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.

social.eyeforpharma.com/about-us

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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.



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Awareness Campaigns

Got a campaign you’d like to share, drop me an e-mail, Carole at fibroflutters@gmail.com



#PAM2018

         

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FibroFlutters in Support:

#Fibromyalgia #fightfibro #Fibro2018 #fibroawareness #shoutitloud #Patients #JustGiving

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?!


PLEASE help raise awareness of join us as we launch our double album. fantastic night of     

Special guest appearance by

The Rigger , Newcastle Under Lyme

please share


Visit Rock Off Fibro’s PUBLIC group on FaceBook  >>>

ROCK OFF FIBRO, Fibromyalgia Awareness concert. Public group

Visit Rock Off Fibro on Twitter  >>>

Rock off Fibro   @rock_off_fibro

twitter.com/rock_off_fibro



#EpilepsyAwareness  #Epilepsy

The Turning the World Purple Foundation  |  Epilepsy | 


MOTTO:

We are more than our diagnosis. Epilepsy is NOT who you are.

We are working to smash stigmas associated with Epilepsy through advocacy and education.

www.turningtheworldpurple.org/

Maybe you could help out in some way and get involved 🙂



chronicillnessbloggers.com
Connecting You to the Chronic Illness Community

chronicillnessbloggers.com  | 2018/02/07 | new-era-chronic-illness-bloggers



 #notjustpatients

fibroflutters mental health discussion group cover pic
Don’t be afraid to reach out!

Why not join FibroFlutters Mental Health Group On faceBook and help us to grow a friendly place to talk about Mental Health  >>>

https://www.facebook.com/groups/FFHQMentalHealth/



Something new

In the Chillout Lounge!

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 

By  Meditation and Healing |  8 September 2018

Why not visit Meditation and Healing to see what other tubes they have?  >>>



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




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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.

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 


MANY THANKS in advance for your understanding –

from the administrator – fibrofly73


Many thanks for reading our posts and helping to share the news that other folks like you write, or, find.



Got something you’d like to suggest or even just talk about please contact us via this form

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