#chronicillnessVOICE | 2 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


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



A belated newsletter due to technical issues with my broadband connection intermittently going off all the time!

 



 

European Medical Journal | 2 November 2018

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


Today’s headlines include >>>

  • Just a few drinks can change how memories are formed – sourced via medicalxpress.com 
  • Rise in women having induced labours – sourced via  www.bbc.co.uk
  • Managing Extubation and the Post Extubation Period in the Intensive Care Unitwww.emjreviews.com
  • EMJ Respiratory 6.1 2018 www.emjreviews.com
  • Review of the 28th European Respiratory Society International Congress 2018www.emjreviews.com
  • Movember United Kingdom – sourced via  uk.movember.com
  • Editor’s Pick: JAK Inhibitors in the Treatment Algorithm of Rheumatoid Arthritis: A Review –EMJ Rheumatology

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



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Ellen Bayens | The Celiac Scene News | Issue: October 2018

For gluten-free news and information including  >>>


CELIAC EXPERT CORNER


Sherry Scheideman, Celiac Counsellor’s Corner

  • I Got Married Last Month!
The Celiac Dietitian – Selena De Vries, RD
  • Ask the Celiac Dietitian – Selena De Vries – During Virtual Office Hour Every Friday
  • Dietitian Services by Celiac, Selena De Vries, RD
  • Post-Halloween Gluten-Free Candy Debrief!

The Celiac Scene

  • The Celiac Scene Presents at the BC Society of Laboratory Scientists Congress
  • What Does the Gut Say? How the ‘Bugs Inside Us’ Affect Overall Health
  • Study Points to Connection Between Epilepsy and Gluten-Related Disorders
  • Gluten-Free Craze a ‘Double-Edged Sword’ for Celiac Patients
  • Don’t Trust Your Gut to Tell if You’ve Been Glutened
  • Travel Gluten Free Podcast Interviews Victoria’s The Celiac Scene
  • Registered Dietitian Spills the Beans on Food Sensitivity Testing
  • A Third of ‘Gluten-Free’ Restaurant Dishes Contain Gluten, Study Finds

CANADIAN CELIAC PODCASTS


OUR FAVOURITE GLUTEN-FREE PRODUCTS & SERVICES


GLUTEN-FREE RECIPES

  • Tips & Tools for Terrific Gluten-Free Cookies
  • Rawthentic Eatery’s Recipe for a Gluten-Free Halloween
  • Everyday Gluten Free Gourmet Does Yorkshire Pudding That Double as Sliders!

GLUTEN-FREE SALE DAYS –

Follow The Celiac Scene Facebook Page for Daily Updates

  • TUESDAYS – PEPPER’S FOODS
  • WEDNESDAYS – THE MARKET STORES
  • LAST SATURDAYS – POMME NATURAL MARKET NANAIMO – 20% Off Store Wide
  • THURSDAYS – RAWTHENTIC EATERY
  • THURSDAYS – THRIFTY FOODS
  • FRIDAYS – COUNTRY GROCER
  • MONTHLY – LIFESTYLE MARKETS & SELECT
  • MONTHLY – MOTHER NATURE MARKET & DELI
  • MONTHLY – POMME NATURAL MARKET NANAIMO

Read all the above and more via the following link  >>> 

Ellen Bayens ~ The Celiac Scene News – October 2018


Your Gluten-Free Guide to Victoria, Vancouver Island & the Gulf Islands!
Restaurant Reviews! Celiac News! What to See & Do in Gluten-Free Paradise!



Follow The Celiac Scene on Twitter  >>>



Header image is from the newsletter 


© 2018 Copyright – Site by Victoria’s PPC Solutions

The Celiac Scene


 



 

#digitalhealthnews #digitalhealth #AI #analytics #digitalpatient

#clinicalsoftware #sharedrecords #healthCIO  #digitalNHS

Digital Health Newsletter | 1 November 2018


Headlines  >>>


AI AND ANALYTICS | AI could ‘make a difference to healthcare’ but patient trust is key


NEWS |  Bradford GP practices hit by IT issues


DIGITAL PATIENT |  NHS Highland trials GP Near Me video service in Wick


DIGITAL PATIENT |  Wave 2 of NHS Test Beds takes aim at diabetes and A&E admissions



Features


story img

 

FEATURE |  GDE hyperbole risks hobbling NHS IT plans

 

 


story img

 

SHARED RECORDS | Special Report: Mental Health

 

 


story img

 

FEATURE | The app giving power to outpatients at Milton Keynes University

 

 


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

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.


story img

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

There is growing demand for secure alternatives to ‘WhatsApp’ for use by clinical teams, but this need extends beyond hospitals and secure messaging alone. This webinar will showcase the CareFlow Connect platform and the work we are doing to provide event driven care coordination for whole health economies.



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

 



FibroFlutters

FIBROfLUTTERS LOGO ON WHITE PHOTOTASTIC

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!!


Fibro Flutters Flier FRONTFibro Flutters Flier BACK

 



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.

 



 

#ArthritisAwareness

Arthritis Foundation


Arthritis Foundation | Live Your Best Life | It All Starts Here | 1 November 2018

In this issue  >>>

  • The Live Yes! Arthritis Network
  • Live Your Best and Look Your Best
  • Say YES to Fitness
  • Congress Said Yes! to Transparency at the Pharmacy Counter

SAY YES TO JINGLE BELL RUN

JBR the Perfect Fun Run

6 Reasons Why JBR is the Perfect Fun Run 
If you’re a runner AND a parent, we’ve got the ideal opportunity for you to let off some steam, keep the kids entertained and do good for a great cause – Jingle Bell Run!


Link to the newsletter >>>

Arthritis Foundation | Live Your Best Life | It All Starts Here

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


 

#mentalhealth #pyschcentral

fibroflutters mental heal discussion group cover pic

Psych Central Newsletter |  Anxiety Weekly

1 November 2018

Today’s headlines  >>>


  • Tornado Brain: Taming the Whirlwind of Anxiety (World of Psychology)

  • When You Can’t Stop Seeing the Negative in Everything (World of Psychology)

  • How Our Society Is Creating Anxious Kids (Thoughts of a Therapist)

ASK THE THERAPIST

Social Anxiety All My Life
I am a 35 y/o male diagnosed with Asperger’s Syndrome at age 15 and haven’t had many friends in high school and always…

I’m Scared of Losing Myself
I’m 19 and I’m in a 1-year, 4 months relationship, and I think I’m starting to be obsessive over my boyfriend. He’s so good to me – he knows…

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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Society for Participatory Medicine


 






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

 



 

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

Patient Newsletter  | Be kinder to yourself this World Mental Health Day |  10 October 2018

Main Headline  >>>

Visit our Mental Health Hub

Let’s talk about it

The myths about antidepressants you need to stop believing

How can we break mental health stigma?

Surprising ways stress can affect your body

This is what it’s like to experience psychosis

Can exercise help with grief?

Do mental health apps really work?

Easy tips for boosting your health



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.

Patient.info

 



 

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

 



Sharing some ‘WEGO’


Christine Von Raesfeld's profile photo, Image may contain: Christine Von Raesfeld, smiling, outdoor

Christine Von Raesfeld  a fellow patient leader and health advocate 

Im-Patient Steering Committee at eyeforpharma

Patient Advisor at PatientsLikeMe

 

 

Christine shared an EVENT she is co-hosting with Lupus Foundation of Northern California

Facebook LIVE ~ Lupus101: Essential Oils/Aromatherapy

Does aromatherapy really work?

Join the talk with Doterra Rep, Suzy Martyn, Who will be answering all of your questions about essential oil. Hosted by Christine Von Raesfeld & Lupus Foundation of Northern California

You can access this ‘Public’ Facebook LIVE event via following this link  >>>


 

Fellow #patientleader & #healthadvocate #patientadvocate Daniel De Garza shared this awareness poster via the WEGO Health Patient Leader Connection for AIDS awareness day 13th October.

Please help by sharing and showing your support


Daniel G Garza's profile photo, Image may contain: one or more people and close-up

You can find Daniel on  >>>

FACEBOOK:  www.facebook.com/DanielGenovevoGarza

Actor, Speaker, HIV Advocate, Reiki Master

Podcast Host at Put It Together – An Abnormal Entertainment Podcast

putittogetherpodcast.blogspot.com/?m=1

No automatic alt text available.

 


 

Guest Contributor on Pain Resource:

What It’s Really Like Living With an Invisible Illness | Pain Resource | 9 October 2018


Opening lines:

When you’re living with an invisible illness, you can look perfectly fine on the outside. The inside though is often a dramatically different story. Those of us who face this battle day in and day out live with burdensome conditions such as fibromyalgiaarthritismigrainesEhlers-Danlos syndromeautoimmune disordersSjogren’s syndromebipolar disorder and depression. The list doesn’t end there.


Pamela Jessen living with an invisible illness

 

By Pamela Jessen a fellow #advocate #patientvoice. She focuses her writing on #chronicpain #chronicfatigue & invisible illness. In addition to her writing, she #volunteers with the Patient Volunteer Network in British Columbia

Also a member of WEGOHealth Patient Leader Connection

Read the article / post via this link  >>>

Visit Pain Resource and sign-up for newsletters  >>>

 


 

I USE OPIOIDS AND I’M NOT AN ADDICT | 

Shared via the Wego Health Patient Leader Connection on |Facebook by Laura Tietz  |  Website Coordinator, Editor-in-Chief, Contributing Writer at The Unchargeables

Find Ribbonrx 

 ABOUT ~ ribbonrx

The goal of this blog is to give a voice to issues that are near and dear to my heart (meaning, issues I suffer from) that need a louder voice.


 

ribbonrx discusses their experiences with #opioids & #nonaddiction to highlight the fact that not all opioid users are addicts & it is wrong to discount it as an issue. I agree being an opioid user in the UK who isn’t up against the system in the #US


Read the blog post by ribbonrx via this link to her website  >>>

ribbonrx.com/2018/10/09/use-opioids-not-addict/


Are you a patient leader why not check out WEGO Health to see if it could benefit you, if it does why not sign-up while you are there!?

Once registered you can build your profile and also gain access to the Patient Leader Connection group on Facebook.

 



#chronicpain

Our Neglect of Chronic Pain Has Left Many Without an Identity | Scott McKinney Ph.D  |  National Pain Report | 11 October 2018 

Opening lines:

Imagine if, as a society, we had the inability to be good parents. The resulting context would be one where a greater need existed for individuals and groups that provided a solution to the problem.

Read the post via this link  >>>

Our Neglect of Chronic Pain Has Left Many Without an Identity ON National Pain Report

Visit the website >>> nationalpainreport.com/


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#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
4747 Research Forest Drive, STE 180
The Woodlands Texas 77381
USA


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

 



 



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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