#chronicillnessVOICE | 8 October 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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


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!!

Before you start 

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 

First Opinion

Your weekly roundup of STAT’s First Opinion | STAT: First Opinion | 7 October 2018

First Opinion authors started October with a bang, writing about gender and cancer treatment, Memorial Sloan Kettering’s woes, treating teens who have been sexually assaulted, and much more. 
Read on! If you have an idea for First Opinion, please send it to Patrick Skerrett at first.opinion@statnews.com

Male doctors said my ‘female’ cancer was incurable. Then a woman took command and gave me hope

Memorial Sloan Kettering, you’ve betrayed my trust

As a pediatrician, I work with sexually assaulted teens. They deserve full investigations

More research on ‘dying healthy’ will also help us live healthier

We mustn’t let the Mental Health Parity and Addiction Equity Act languish


GlobeDocs invites you to join them for their 2018 Film Festival

Keeping the Nobel Prizes relevant

Precision medicine needs a business mindset in order to flourish

Bringing order to the ‘wild frontier’ of microbiome medicine

Read all the above via this link  >>>

1 Exchange Pl, Suite 201, Boston, MA 02109 
©2018, All Rights Reserved.



Welcome to the Samaritans Monthly Newsletter | Samaritans  |  5 October 2018 

World Mental Health Day | Wednesday 10 October

let’s try to remember to campaign for better mental healthcare the best ways that we can ~ Carole aka fibrofly73

Creating better listeners at work
To coincide with World Mental Health Day, we’re highlighting our Wellbeing in the City e-learning tool  >>> Sign up for Wellbeing in the City

Take part in our Christmas Raffle! | Samaritans Christmas Raffle 2018 is now open

Read all the above via this link to their newsletter, please opt-in to recieve it if you like what you read  >>>

Have a brew. Raise money. Save lives.

  • Brew Monday 2019 is coming so get ready to make it bigger and better than ever before!
  • Get together with your friends, family or workmates on Monday 21 January, have a cuppa, raise vital funds for Samaritans and beat the January blues.

You’ll be able to sign up for a free fundraising pack from October 15th – so keep an eye on Twitter for more information.
Keep up to date by following us on Twitter >>> 

Visit samaritans.org  |  Contact Samaritans  |  Volunteer with us

Whatever you’re going through, call us free any time, from any phone on 116 123.
Copyright © 2018 Samaritans, All rights reserved.




The Robots Are Coming! Roll Out The Red Carpet

News and articles via eyeforpharma – Newsletter by Adam Chapman
Editor, eyeforpharma | 28 September 2018

In other news:

  • A Career-Defining Diagnosis, we are excited to share with you the first article in our new Patients In Pharma series. Each article will provide a window into the world of patients that are working within pharma. 
  • In When Patients Take Control, Our chairman Paul Simms gives us the lowdown on the patient projects he is spearheading and the motivations behind them.

Adam says – If this piqued your interest, tell your friends to sign up here.

You can also keep up with us on twitter or LinkedIn.

Download your entry pack for the eyeforpharma 2019 Awards

It’s that time of year to begin thinking about the eyeforpharma 2019 Awards, how are you making a difference for patients? and Health Care Providers??

Here’s your chance to showcase your ideas, projects and successes by downloadig the awards application pack. Download your entry pack for the 2019 Awards

Any questions please contact >>>

Lucy Fisher
Awards Manager

Focussing on the patient voice and understanding what outcomes mean to their patients were key for the collaboration between Allergan, SonarMD and Illinois Gastroenterology Group (IGG). Their project ‘IBS-D Patient Engagement Platform’, was the winner of the eyeforpharma 2018 North American Most Valuable Collaboration.

The video below contains the story of their innovative mobile platform, that resulted in improved lives of their IBS-D patients  >>>

Watch the Most Valuable Collaboration award video and find out more here. OR BELOW


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.


Get the latest industry insights in your inbox:

Follow eyeforpharma on Twitter:
Like eyeforpharma on Facebook:
Subscribe to eyeforpharma youtube channel:

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

Your weekly update from EDS UK! | The Ehlers-Danlos Support UK | 5 October 2018 

Headlines in this issue  >>>

Have you completed the BLF survey? 

EDS UK secured four years of funding from the National Lottery through the Big Lottery Fund, to help us support those touched by EDS. Twice a year we are required to provide feedback to the BLF on how their funding is helping us meet our objectives.

The survey should take you no longer than eight minutes to complete here. Thank you as always. 


Join the global EDS Registry which endeavours to >>>

Map the experiences of those living with Ehlers-Danlos syndromes (EDS) and related disorders globally

Facilitate research into the frequency of comorbid conditions associated with the various types of EDS and HSD.

Enable the gene search for hypermobile EDS and hypermobility spectrum disorders

Discover new forms of EDS/HSD and ascertain the relationships between EDS/HSD and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, autonomic disorders

BBC Inside Out ‘Vascular EDS and me’

Vascular Ehlers-Danlos syndrome has been featured in the news on BBC One’s Inside Out and is now available to watch on iPlayer. 

Watch from 11 mins 17 secs to view the story of 25-year old Caroline Prentice living positively with vascular EDS despite losing her sister and two brothers to vEDS.

BBC Sport features Anoushé Husain

“Really chuffed to see my video on the front page of BBC get inspired! Raising awareness of the benefits of activity is really important to me.” ~ Anoushé Husain

WEBINAR Getting the most for your child – working with schools and professionals

Author of Ezra’s Extraordinary Stripes, educational and child psychologist Dr. Louise Lightfoot is doing a free webinar for EDS UK members on how to get the most for your child from schools and professionals.

Register for the webinar which will be held on Tuesday October 23rd at 1pm via the newsletter link below

Help with FUNDRAISING – Don’t forget to use Give As You Live this Halloween!

World Poetry Day | Poem by Christina Moore

Your stories  and much more via this following link  >>>

Are you not a member and wish to be please register via this link to benefit from newsletters, support group access and much more >>>



Copyright © 2018 The Ehlers-Danlos Support UK

The Ehlers-Danlos Support UK is a Charity registered in England and Wales (1157027) and Scotland (SC046712. Registered Company No. 8924646. Registered Address: Devonshire House, Manor Way, Borehamwood, Hertfordshire WD6 1QQ




Trigeminal Neuralgia – Why Awareness Is So Important | Elizabeth Sirrell  |  National Pain Report | 7 October 2018 

Opening lines:

Trigeminal neuralgia, is an excruciatingly painful condition affecting the nerves on the face. The pain, most often on one side of the face, can be like an electric shock, like a bolt of lightning, or it can be stabbing, burning or aching.

Read the post via this link  >>>

Trigeminal Neuralgia – Why Awareness Is So Important

Visit the website >>> nationalpainreport.com/

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#HeartHealth  #Heartmatters  #Heart  #cardiology #cardiac #healthy #lifestyle

Heart Matters  |  Fancy cauliflower cheese for dinner tonight? |  6 October 2018

Information, inspiration and support for a heart-healthy lifestyle

Watch: What’s it like to live with dementia

Wayne was just 59 when he was diagnosed with vascular dementia and Alzheimer’s. Watch him tell his story in our moving short film and learn how these conditions are connected to heart and circulatory diseases.

The diet that's good for your brain image


The diet that’s good for your brain

The right diet can keep your brain healthy as well as looking after your heart. We’ve got the facts on how to do that – and it’s not as bad as you might think.

Statins and sleep image


Could statins cause sleep problems?

Our expert answers a question about whether statins could cause sleep problems.


Popular in the last 7 days  >>>

1. Quiz: How much do you know about salt?

2. Are butter, cheese and whole milk really good for you?

3. Watch: Could fat in your bloodstream cause blood clots?

4. 6 tips for getting fit after 50

5. How ticks are helping to cure heart disease

How tai chi could benefit you

Tai chi can offer benefits to people of all fitness levels, and could improve your mental as well as physical health. Find out how tai chi has helped Trevor through his heart problems.

Find something amazing at our Furniture & Electrical stores

Have you visited your local BHF Furniture & Electrical store lately? You’ll find amazing preloved items for your home. You can find inspiration to upcycle your chosen piece on our #BoughtatBHF photowall. 

Tell us what you think of Heart Matters

You could win a £50 John Lewis or Marks & Spencer voucher by telling us what you like about Heart Matters, and what you’d like to see more of in the magazine. Help us improve and you could be a winner!

(Start the survey via the newsletter link below)

Recipe of the week: Cauliflower cheese

With a chill in the air, it’s time for some warming comfort food. Cauliflower cheese is a family favourite – and with a few tweaks, it can be healthy and delicious too.

(Get the recipe via the newsletter link below)


Read all the above via this link  >>>

Why not join British Heart Foundation Community  >>>


Follow them on Twitter  >>> 


Could you, or someone you know, benefit from receiving Heart Matters?

Encourage them to <<< sign up here >>>

Sarah Brealey

Heart Matters Editor

Visit The British Heart Foundation website:  bhf.org.uk
Copyright © 2018 British Heart Foundation. All rights reserved.
British Heart Foundation is a registered Charity No. 225971.
Registered as a Charity in Scotland No. SC039426.

FibroFlutters supporting British Heart Foundation & #CardiacHealth (unaffiliated)




#PAM2018  #fightfibro #fibro2018

Fibromyalgia News Today Weekly Columns | 3 October 2018

Headlining in this issue  >>>

Other headlines  >>>

  • Recent Posts Pushing Against My Seasons of Stress
  • How to Deal with Sensory Overload
  • Swimming Eases My Fibromyalgia Symptoms
  • I’m Thankful for Community Caregivers and the Devices that Help Me on My Journey
  • My Opportunity for Laughter Was a Gift

Read the above via this link  >>>


Why not visit Fibromyalgia News Today website to read more posts and opt-in for e-newsletters  >>>

BioNews Services, LLC
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5th Floor
Dallas, TX 75206
Email: info@bionewsservices.com
Phone: 1-800-936-1363
Copyright © 2018 BioNews Services, LLC, All rights reserved.


#Professionals #paients #MSK  #musculoskeletal 

Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | October 2018

Harnessing a collective focus to transform MSK services

In this issue

Harnessing a collective focus to transform MSK services


CEO update

Harnessing a collective focus to transform MSK services

“MSK – Not a challenge anyone can solve alone”


“ARMA is all about collaboration, seeing the value of working together, the power of combining the perspectives of patients alongside a range of professionals. We hope that the NHS ten-year plan will also recognise both MSK, and the importance of a multidisciplinary pathway approach to supporting people with MSK conditions.” 


Webinar: Setting up a MSK Service

Restrictions on access to care – the impact of waiting for surgery

  • Guest blog by Justine Clarke, Chief Operating Officer, British Orthopaedic Association

MSK services survey – Please let us know what is happening locally

We need you to support ARMA during Bone and Joint Week 2018

12-20 October 2018

12-20 October is a time of important collective campaign activity for ARMA members, with Bone and Joint Week.

The theme of campaign is:

“Musculoskeletal conditions: The elephant in the room?”

During #BoneJointWeek  ARMA will be releasing a variety of infographics shariing important messages which the professionals within ARMA’s policy and Communications team have designed and created.

They ask us to share / retweet from @WeAreARMA  and to also keep our eyes peeled for vlogs from the event too

When retweeing or sharing on other social media channels can you please use the following hashtag #BoneJointWeek 

12-20 October – Bone and Joint Week:

12 October: World Arthritis Day

16 October: World Spine Day

19 October: World Paediatric Bone & Joint Day

20 October: World Osteoporosis Day

Bone and Joint Week 2018 is part of an international campaign to improve musculoskeletal health.

Webinar – Commissioning for Quality:

Community-based Rheumatology Service | 19 October 2018 – 12.30 – 1.30

  • Who should attend? Commissioners, GPs, clinicians working in rheumatology services.
  • Presenter:
    Erica Gould, Nurse Consultant at Community Rheumatology Service Modality Partnership

Webinar – The British Society for Rheumatology’s Choosing Wisely UK Recommendations
1 November 2018 12.30 – 1.30

  • Who should join?  Everyone interested in optimising care for people with musculoskeletal problems, including patients, carers, clinicians from primary and secondary care, allied health professionals and commissioners.
  • Presenters:Charlotte Sharp, Rheumatology Specialist Trainee, HEE(NW) and Clinical Academic Fellow, NIHR Collaboration for Leadership in Applied Health Research and Care Greater ManchesterLizzie MacPhie, Consultant Rheumatologist, Lancashire Care NHS Foundation Trust, and Chair of the British Society for Rheumatology’s Standards, Audit and Guidelines Working Group.

  • Public Health England – Case study and report on lessons learnt
    A report by Public Health England has been published in the World Health Organization’s European journal, Public Health Panorama.

“Developing partnerships and a whole-system approach for the prevention of musculoskeletal conditions in England”

And much more!…

MSK services survey – Please let us know what is happening locally

As part of their 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 their support for improvements.

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


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.



#professionals  #patients  #paintoolkit  #toolkit  #selfmanagement

New research from Pain Concern on easing pain appointments | Pain Concern |  October 2018

Helping focus pain appointments with the Navigator Tool

This edition has been funded by funded by the Health and Social Care Alliance and Edinburgh and Lothians Health Foundation

Adam Wilson | Broadcast Assistant | Pain Concern said in his correspondence –

“In 2015 Pain Concern released its report ‘Breaking barriers to self-management of chronic pain in primary care’, marking the end of the first part of its ‘Breaking Barriers’ project. Its aim was to highlight the commonly occurring barriers that patients faced during one-to-one appointments with healthcare professionals, and to advance the primary care management of chronic pain.

Phase two of the project was to produce a ‘navigator tool’ to break down those barriers and prepare patients and GPs in order make the most out of their appointments. Phase two is now complete, and in this edition of Airing Pain, Paul Evans speaks to the researchers, patients, and healthcare professionals that allowed this project to happen.”

More information:

The Navigator Tool is free to download from Pain Concern’s website along with the study, the report, FAQs, and a wealth of resources from experts into managing long term pain. Just visit painconcern.org.uk/easing-pain-appointments/


–    Dr John Hardman – GP, Navigator Tool study participant   
–    Professor Blair Smith – Scottish Government Lead Clinician for Chronic Pain, Professor of Population Heath Science, University of Dundee
–    Dr Louise Bailey – GP, Navigator Tool study participant   
–    Renee Blomkvist – Pain Concern researcher for the Navigator Tool
–    Lucy Murphy – Patient, Navigator Tool study participant

Pain Concern
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
Tel: 0131 669 5951

Helpline: 0300 123 0789 E-Help: help@painconcern.org.uk
Find us: Twitter  Facebook  Forum
Copyright © 2017 Pain Concern, All rights reserved.





Newsletter link >>> Relief newsletter 27 September

A diverse group of stakeholders launch a patient-centered initiative that aims to overcome the stigma and other factors hampering care. Image credit: aomvector/123RF Stock Photo.


Headliner:  Coming Together to Put Patients First in Headache Treatment | By Stephani Sutherland 

Copyright © 2018 RELIEF, All rights reserved. RELIEF is a service provided by the
IASP Pain Research Forum


#PAM2018 #Arthritis  #Toolkit #Exercise #Fitness  #HealthCare

The Arthritis Foundation  |  Go Outside and Play! |  25 September 2018

Articles  >>>

  • Walk This Way:12 Benefits of Walking
    • Walking is easy to do and offers many benefits, especially for people with arthritis.

Get your Better-Living Toolkit via this link  >>>


Living With Arthritis webpage where you get access to a whole host of help and advice, plus you can also, opt-in for e-newsletters  >>>

Join their community  >>>

Visit their website >>>

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


#chronicpain #PAM2018 #fibro #backpain

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.

Thanks for reading ~ Carole

Read Barbara’s latest post via this link  >>>

Visit Back Pain Blog UK via the link below and opt-in for e-news  >>>


Patient Newsletter  |  Is overtime wrecking your health?  |  26 September 2018

Main Headline  >>>

What overtime is really doing to your health?

Healthy living tips from the experts

Should you take vitamin D every day?

Are e-cigarettes a safe way to quit smoking?

What is sexual consent?

Who should take aspirin every day?

This week’s recipes

Sticky soy citrus baked salmon

Sausage pilaf

Join our mental health forum >>>

Read more articles / posts from the newsletter by following this link  >>>

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.




#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

Baroness Campbell head and shoulders at the committee hearing


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 |  7 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.

Aging and Decision Making: Who Makes Riskier Decisions?
Researchers report older people may make riskier decisions than younger people.

Diet and Weight May Affect Bipolar Treatment Response
Researchers report diet and weight may hinder the response to medications for some with bipolar disorder. The study found those who had a better quality of diet and lower BMI responded better to treatments than those who were overweight and ate foods that promoted inflammation.

Education Improves Decision Making Ability
A new study reveals education can be leveraged to help enhance a person’s economic rationality.


Neuroscience News |  Neurology  |  Robotics |  Psychology  |  Submit News
Neuroscience News
4747 Research Forest Drive, STE 180
The Woodlands Texas 77381

Neuroscience is a multidisciplinary science that is concerned with the study of the structure and function of the nervous system.



#mentalhealth #pyschcentral

fibroflutters mental heal discussion group cover pic

Psych Central Newsletter |  Psych Central Daily

7 October 2018

Today’s headlines  >>>

  • Materialism
  • When You Crave Control of Everything
  • Teen Cannabis Use Linked to Impaired Cognitive Development
  • Income, Behavioral Factors May Drive Cancer Death Disparities


    Read the above posts via this link  >>>

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


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

    CERTIFICATE OF COMPLIANCE Psych Central is in compliance with the HONcode
    Logo certificat HONCode

    Society for Participatory Medicine



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


    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



    #NeuroendocrineCancer  #NETS

    RonnyAllan.NET – Community Newsletter Covering August 2018


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


    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

    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



    EVENT | eyeforpharma | Marketing and Customer Experience Europe/London 2018 Oct 16-17th

    Running alongside the Patient Summit

    Marketing and Customer Innovation Europe 2018

    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.


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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.

    eyeforpharma logo


    Awareness Campaigns

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




    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




    #EpilepsyAwareness  #Epilepsy

    The Turning the World Purple Foundation  |  Epilepsy | 


    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.


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



    Connecting You to the Chronic Illness Community

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



    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  >>>


    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


    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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