#chronicillnessVOICE | 29 October 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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

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

Better late than never!

#NeuroendocrineCancer  #NETS

RonnyAllan.NET – Community Newsletter Covering August 2018


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

eye iris anatomy biology
Photo by Tookapic on Pexels.com

#PsoriaticArthritis #eyedisease  #vision

Arthritis Foundation


Protect Your Vision from PsA (Psoriatic Arthritis)
Learn what eye conditions are linked to PsA and what treatments are available.

The Arthritis Foundation say that the same inflammation that attacks our joints is the same that can cause certain eye diseases / conditions.

Meaning that an inflammatory health condition such as PsA, and others, which attack the collagen / connective-tissues, can also affect our eyes.

“Within a small little ball, the eye is like a microcosm of the entire body.”

Taken from the Arthritis Foundation Newsletter:
Psoriatic Arthritis Can Affect Your Vision | 26 October 2018

Now I can hear you all asking ‘what eye conditions should you be looking out for?’

The Arthritis Foundation advise that during your diagnosis of PsA there are 6 main eye conditions to watch for.  The link takes you to their website where you can find out about these 6 conditions and what symptoms to look out for? who it affects? and also, the kinds of things that you can do to help prevent the conditions from developing, or from worsening.

“Your eyesight means everything to what you experience in everyday life – and we want to help you protect your vision when you have PsA.”

Taken from the Arthritis Foundation Newsletter:
Psoriatic Arthritis Can Affect Your Vision | 26 October 2018

Read all about the ‘6 Ways Arthritis Can Affect Your Eyes’ via the following link  >>>

Helpful Remedies for Arthritis

Nature’s Best Remedies | Read more

Visit the Arthritis Foundation website for more interesting and useful articles aimed and designed to make our lives with #arthritis easier  >>>


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


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 

#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


A protester in a crime scene outfit crouches by a sign saying universal credit is a crime


Nathan Lee Davies holding a sign saying #Right2IL



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

#digitalhealthnews #digitalhealth #AI #analytics #digitalpatient

#clinicalsoftware #sharedrecords #healthCIO  #digitalNHS

Digital Health Newsletter | 25 October 2018

Headlines  >>>

NEWS | Last call on applications for second year of NHS Digital Academy

CLINICAL SOFTWARE |  DrDoctor to be trialled across 11 more NHS hospitals

AI AND ANALYTICS |  Facebook’s health research head says doctors should have more patient data

INFRASTRUCTURE |  Mandatory open standards will not close health IT market, DHSC believes

NEWS |James Dyson award shortlist includes range of health innovations


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FEATURE |  Why you’re not getting the most out of your investment in portals


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FEATURE | A host of changes: moving a PHR to the managed cloud



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FEATURE | I welcome Hancock’s vision, yet can’t entirely eliminate my cynicism



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FEATURE | The CCIO profile: Dominic Bullas, Barnsley Hospital NHS Foundation Trust



Upcoming Events  >>>

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One London: Linking health and care across the capitalOne 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.

Upcoming Webinar  >>>

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Turbo-charging programme management across the NHS – why and how

The webinar will provide you with insights into how and why the trust selected and implemented Fortinet. You will also learn how the use of SIEM has helped improve compliancy, driven efficiencies and enabled the trust to better utilise information from their existing technology assets to gain useful and insightful knowledge from their network.

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

Read the above and more via this link  >>>


Follow Digital Health on Twitter  >>>

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


Digital Health Intelligence Limited
China Works
Black Prince Road
LondonLnd SE1 7SJ
United Kingdom
Copyright (C) 2018 Digital Health Intelligence Limited All rights reserved. 



Okay!, so a little late, some will say “better late than never”!

Patient Newsletter  | Are you looking after your heart? |  19 October 2018

Main Headline  >>>

The best things you can do for your heart

Healthy living tips from the experts

Sneaky ways to get more fibre in your diet

The best ways to quit smoking for good

How to cope when you find out your breast cancer has spread

How to tell if you have an underactive thyroid

Should all children be screened for mental health problems?

This week’s recipes: Heart-healthy meals


Grilled salmon with chilli-infused edamame




Tuna puttanesca with wholewheat spaghetti



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.




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 

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.


Patients Included

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

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




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/


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




 Survey: 100 Chronic Pain Patients Needed |  National Pain Report | 29 October 2018 


The group seeks to localize key recommendations from the National Institutes of Health’s National Pain Strategy in the Golden State. Then they hope that this strategy cannot only be implemented in California, but it will be a guide for other states.

To do that, they must understand what the chronic pain community thinks the big issues are.

Read the post via this link  >>>

Visit the website >>> nationalpainreport.com/

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#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.

Unique Patterns of Neural Communications Discovered in Brains of Autistic Children
A new study reveals unique connections within brain networks in children on the autism spectrum. Researchers say, in ASD, the amygdala shows marked differences in connection with the occipital cortex than in typically developing children.

Mini Retinas Shed Light on Connection Between Eyes and Brain
Findings could help to develop new treatments to restore site when connections between the eyes and brain are damaged, researchers say.

Cannabis Pain Relief Without the High
Researchers have pinpointed an effective dose of CBD to help treat chronic pain, without generating the typical marijuana ‘high’.


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.



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


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


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



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 – 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 


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

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