#chronicillnessVOICE | Morning Edition | 28 June 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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


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.


Twice Daily!   #carenews #careguide #care #homecare #elderly #disabled #chronicillness  #invisibleillness

News from Focus on Disability 

Their mobile-friendly websites provide online support, information and products for disabled people, the elderly and their carers in the UK.

For disabled people, the elderly and their carers in the UK

Why not visit and opt-in for their newsletters  >>>

Please help their wealth of information and resources reach the disabled community by visiting them and sharing. 

Visit the link above to find all their social media links! 

Don’t forget to check this evenings edition for their next update!



Twice Daily!   #HealthNews #ChronicPain  #Autoimmune  #Systemic #Dementia #Arthritis #Lupus #Sjogrens #PatientAdvocacy  #chronicillness  #invisibleillness

Life Chronic Pain & Autoimmune Systemic Diseases & Dementia® 

This paper is great for variation, and health related news for disorders that are invisible or not generally heard of.  

Rhia Steele

All aspects of autoimmune/chronic pain illnesses, fighting to survive & grow past them, as I now stand alone to disallow these to get me down.  Published author, writer, activist, Platinum Ambassador for the Arthritis Foundation, Advocate for WEGO Health, blog Lupus, RA, Sjogrens’, Health, patient with autoimmune illnesses, and how they can wreck life, or you can make it better, love helping others.

The Latest Health News & Related Subjects from Rhia at your fingertips

Why not visit and opt-in for newasletters  >>>


Don’t forget to check this evenings edition for their next update!



Twice Daily!   #carenews #careguide #care #homecare #elderly #disabled #chronicillness  #invisibleillness

News from UK Care Guide 

A UK care news site designed to help both those going in to care and those supporting a loved one going in to care.  Their aim  is to bring together all the important information that people will need.

Follow the link below for Uk Care News  >>>

Why not visit and opt-in for newsletters  >>>

Don’t forget this evenings edition for their next update!




#Australia #UK #Europe #Canada #NewZealand #RestofWorld #DisabilityMatters

Daily! #disability #disabilitynews #chronicillness #DWP #PIP #socialcare #Disability Pride

My Disability Matters News & Opinion Digest |  See the latest headlines  | 28 June 2018

Headliners  >>>  

Main Headlines:

Low expectations are stopping young disabled people going to university’ | EDUCATION | 27 June 2018   >>>

Why do some people with autism have restricted interests and repetitive movements? | MENTAL HEALTH| 28 June 2018

Minister for disabled people caught misleading MPs on cuts to support | PENSIONS AND BENEFITS | 28 June 2018

Other Headlines for today >>>

  • Disability Housing : What is possible with supported independent living
  • PIP announcement ‘shows replacing DLA was waste of time and money’
  • Government’s social care funding failure is terrible news for disabled people
  • ‘Fit for work’ assessor suspended for describing examination that did not take place
  • DWP is failing ‘vulnerable’ claimants of universal credit, says watchdog


Follow these links for further news in these sections >>>

Why not join the community? Visit the website to join and opt-in for Worldwide Disability Matters DAILY News  >>>

Very soon My Disability Matters 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 



Twice Daily!  #Fibro  #ME #CFS #ChronicPain #invisibleillness

Fibromyalgia ME Chronic Pain is out!  

How it’s Costing You in Happiness, Financially and in Your Relationships!

Why not visit and opt-in for newsletters  >>>

“Life doesn’t have to be over when you are chronically ill, you just have to reinvent yourself and what you do… Fibromyalgia, ME, Chronic Pain… We can help” – Fibromyalgia & ME news

Don’t forget to check this evenings edition for their next update!



#brain #mentalhealth #chronicillness  #invisibleillness

The brain and mental health voice is out! | selection by Valeria Duflot 

Why not visit and opt-in for newsletters >>>

Valeria Duflot – Paper Li

  • #Socent
  • veneziaautentica.com co-founder
  • Striving for sustainable, community driven, eco-friendly innovation in the fields of health, culture, innovation and travel
  • paper.li/


Updates every couple of days!


 Latest!   #mentalhealth #depression  #anxiety #stress #chronicillness  #invisibleillness

Psych Central  |  Psych Central  Daily Newsletter  |  27 June 2018 

Headlines for today  >>>

  • Compartmentalize to Become More Productive
  • How Passive-Aggressive Behavior Wrecks Relationships
  • Do Today’s Kids Have More Self-Control Than Kids of the 60s?
  • What’s Missing From the #MeToo Conversation? A Trauma Therapist Responds

Today I’d like to highlight this headline from a previous issue, and say that it kinda makes sense, it’s an interesting read

Opt-in for varying newsletters, bipolar; depression; anxiety and more > Home Page:

Taken from the site PLEASE NOTE >>>




#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 journalist who 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

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




DAILY!   #chronicpain  #chronicillness #painmanagement

The Chronic pain Daily |  Support from Coach Amber Rose  | paper.li

Editor’s note

Information is readily available but deciding what is important for you can be overwhelming. I hope that you find good information in these articles. Thriving with Pain has webinars, group coaching and individual coaching to support your 5 steps to Thriving with Pain. I have lived with chronic pain for over a decade. I am well now and know that a flare can happen.

Check out >>>> www.thrivingwithpain.com 


Visit the paper to find out what stories / articles Amber has selected for today  >>>




#NETCommunity #NeuroendocrineCancer #NETS 

RONNY ALLAN – LIVING WITH NEUROENDOCRINE CANCER NETwork with ronny© | RonnyAllan.NET – Community Newsletter May round up | 7 June 2018


Ronny’s Community Newsletter  >>>

Blog Home Page  >>>

Living with Neuroendocrine Cancer



#patients #patientcommunity #patientsnetwork #chronicillness #invisibleillness

http://www.healtheo360.com | Register for a ‘PATIENT’ community and ‘Tell your story!’

Join a Caring Network:

healtheo360 is a community where patients can connect with one another for support, inspiration, and motivation.

About healtheo360  >>>

Opening paragraph:

‘The healtheo360 community includes patients, their caregivers, family members and friends who come to share their personal healing stories so that others may find inspiration and motivation as they go through the journey of living with their condition. Members share their health related stories and learn from each other through discussion. We encourage you to upload your story via video testimonies but we also offer blogging for those who are more comfortable with that method of sharing. At healtheo360 we believe in the healing power of story telling and how beneficial it is to share your story as well as to learn from other people with similar experiences.’

Follow this link to join in  >>>

Very soon http://www.healtheo360.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




#Healthcaare #HealthReviews #Eurpean #Medical #Journal 

European Medical Journal | EMJ 3.2 Now Available!  | paper.li | DAILY UPDATED

We review all of the breaking news from the major healthcare congresses across Europe

Read  via this link to the EMJ paper >>>

A link to keep you going >>> 


Innovations 2.1 2018
MEDICA 2017, Düsseldorf, Germany

This eJournal is a fascinating exploration into innovations from the pioneers of medical research, detailing not only the latest developments from 2017, but also those advances destined to change the future of medicine. Alongside an intriguing array of peer-reviewed articles and interviews with experts at the forefront of medical innovations, you will find our independent coverage of MEDICA 2017.

Editor’s note

“EMJ 3.2 has entered the building! This truly multidisciplinary eJournal returns for its 10th issue and its second of 2018. EMJ 3.2 includes a plethora of high-quality peer-reviewed articles that detail a myriad of fascinating topics across seven therapeutic areas: urology, haematology, oncology, gastroenterology, hepatology, neurology, and reproductive health. This eJournal must not be missed.”

As written in the paper!

Very soon EMJ will have their own spot on the website where you will have access to the links to their community as well as their journals and information.  ~ Carole 



Other Newsletters / Magazines / Blogs of interest

(not in chronological order) 

including  > > >


In the Chillout Lounge!

“Peace & Harmony” Beautiful Meditation Music, Relax Mind Body, Healing Music, Relaxing Music | Meditation and Healing|  23 June 2018



 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!!




Awareness Campaigns

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

2018 Migraine Awareness Month

#Migraine #migrainesymptoms #patientvoice #bloggers #ChronicPain #chronicillness #caregivers

See selected posts further down the newsletter




#GlobalSurvey #Research #Rheumatic # Musculoskeletal #RMD #SoMe #SocialMedia

Shared via Simon Stones | Twitter | 28 May 2018

Do you have a rheumatic and musculoskeletal disease ()? If so, you’re invited to take part in a global survey looking at what people with RMDs think about using for health-related purposes.

To take part follow this link to the study >>>


About Simon >>>

Follow on Twitter >>>  Simon Stones  @SimonRStones

BSc (Hons) • Doctoral Researcher in Child & Family Health •  &  Member •   Trustee • Patient Consultant/Leader




#The Big Leap #MS
Take a leap on the wild side and help stop MS.  |  MS Society

‘On Sunday 2 September, join our team of daredevils and take the leap of a lifetime at our brand new and exclusive MS Society skydiving day, the Big Leap.’  MS Society

The Big Leap Take a leap on the wild side and help stop MS.

Visit the MS Society for more news and events  >>>





Morning Rounds

STAT: Morning Rounds | 28 June 2018

Link to the newsletter >>>

STAT: Morning Rounds

Carole’s pick  >>>

Many overdose death certificates don’t specify a drug 

‘In a new study published in Public Health Reports, researchers report that in five states — Alabama, Indiana, Louisiana, Mississippi, and Pennsylvania — more than 35 percent of death certificates for overdoses didn’t name a drug. But some states have made big strides in classifying overdose deaths.’

Excerpt from STAT: Morning Rounds | 28 June 2018

Read the study by following this link where you can also download the Pdf for FREE  >>>

The Effect of Incomplete Death Certificates on Estimates of Unintentional Opioid-Related Overdose Deaths in the United States, 1999-2015

Authors:  Jeanine M. Buchanich, Lauren C. Balmert, PhD, Karl E. Williams, MD, MPH, Donald S. Burke, MD

Article Information

Article first published online: June 27, 2018 | journals.sagepub.com



Do you like the newsletter and enjoyed the read, why not ‘opt-in’ for STAT morning rounds, and others via this link  >>>





Happiful Magazine E-newsletter | Give us a smile | 22 June 2018

Happiful Magazine Give us a smile

Visit the Happiful website to read past issues online, FREE, and you can also opt-in for newsletters  >>>





WORLD HEALTH ORGANISATION (WHO) | Newsletter | 22 June 2018

WORLD HEALTH ORGANISATION (WHO) | Newsletter | ICD-11: Classifying disease to map the way we live and die

ICD codes what are they? and what do they represent.  This video by the World Health Organisation explains it all .

FEATURE STORY >>> WHO ~ International Classification of Diseases  |  22 June 2018

WHO ~ International Classification of Diseases

Publication of the new ICD codes released on 18 June >>>

For people to begin preparing for the codes being implemented


The following link will take you to the World Health Organization website for more World Health news  >>>




#Healthcare #health #care #NICE #socialcare #evidencebased

Latest issue!  NICE Newsletter | June 2018

Including this month’s PODCAST:   Eradicating HIV, is it possible?

Featured News:  

  • Therapy offered within one month to prevent PTSD, says NICE
  • Life-extending lung cancer drug will be more widely available on the NHS after NICE review

From the BLOG:

  • Improving access to new treatments in rare diseases
  • Have you read my notes, doctor?

Link to newsletter >>>

National Institute for Health and Care Excellence – NICE –  provides national guidance and advice to improve health and social care.

‘Improving health and social care through evidence-based guidance’

Visit the website for other news and you can also choose to opt-in for alerts and newsletters >>>


#digitalhealthnews #digitalhealth #AI #analytics #digitalpatient

#clinicalsoftware #sharedrecocords #healthCIO #LHCRE #digitalNHS

Digital Health Newsletter | Digital Health | 27 June 2018

Late hospital diagnosis, delayed scan results, radiology staff shortages.

Can RIS and AI solutions ease the pressure?


Link to the newsletter and links to other news sections >>>

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

Registered No. 9257440 | Vat No. 198 3531 71



The next 3 post shares were kindly selected by my newly appointed Editor ‘Rie’, Rie Lopez, MPH,  who you will be able to read all about via our new page that is currently under design ‘About the TEAM’, very soon.  A fabulous new addition to my team here, from the US, to help us bridge the advocacy gap between the UK/Europe & US.  

We are Twitter buddies outside the website and both also #patients #patientleaders #healthadvocates #researchadvocates #patientVOICE #chronicillnessVOICE #WEGOHEALTH #Savvy 

Together we hope to build and create a safe haven for advocates to come and be themselves but also to endeavour to help all patients and non-patients find the best SoMe patient platform that suites them.  Now that many more platfoms are appearing a directory of these sites would be a useful tool.

We have lots of great ideas to bring you including a, ‘#twitterchat’, as we slowly update and organise the site over the course of the next few months.  We are also helping each other to learn the differences between our healthcare and public health systems as we work together.

PLEASE NOTE:  Pschiatry Advisor, Rheumatology Advisor and Neurology Advisor are all aimed at #Professionals

Rie’s LATEST selection | Pschiatry Advisor | 26 June 2018   >>> 

Poverty, Neighborhood May Affect Outcomes in Systemic Lupus Erythematosus | | 22 June 2018

Article on how persistent poverty impacts the management of systemic lupus erythematosus (SLE). This study utilized 723 patients who participated in annual structured interviews from 2003-2015. A subset of the larger group, utilized 28 patients for qualitative interviews to determine if and how persistent poverty and related factors impacted SLE management and outcomes. The study findings reported that persistent poverty requires immediate needs-based choices every day, which made it difficult for the participants to focus on SLE management except during a flare.  ~ Gabrielle Lopez MpH

Link to the article >>>


Older Age Associated With Worse Major Depressive Disorder Outcomes |   |  22 June 2018

Article on older age as a risk factor for major depressive disorder (MDD). Tracking the mental health outcomes of 1042 participants, aged 18-88, in a two cohort study over two years, the study found that older participants had higher rates of MDD. Despite adjustments for clinical factors such as multiple diagnoses and/or pain, as well as social factors such as loneliness, depression still remained higher in adults aged 70 or older.   ~ Gabrielle Lopez MpH

Link to the article >>>



AMA Seeks to Make Long-term Care Services More Affordable  | American Medical Association |  22 June 2018

Last pick is more of an interesting policy piece. The American Medical Association (AMA) adopted a policy aimed to streamline pricing and organization of long-term care, while focusing on innovation. Several supportive measures were proposed to benefit families who would likely see catastrophic increases in care costs over the next several decades.  ~ Gabrielle Lopez MpH

Link to the article >>>


You can find more articles of interest via the Psychiatry Advisor website by following this link where you can also opt-in for newsletters  >>>

THANKYOU Rie for your ‘pick of posts’




#Patientcare #Patientnews #NHS 

Patient Newsletter  |  Subject:  Does your body really need vitamin supplements? |  23 June 2018

Main Headline: Does your body really need vitamin supplements?

Does your body need vitamin supplements?

We all need vitamins and minerals for a healthy body. Some of them we can store, but some of them need to be eaten daily. So can you get all the vitamins and minerals you need from a balanced diet, or should you be topping up?

Other Headlines >>>

  • Do omega-3 tablets and fish oils have a proven benefit? | Dr Carrie Ruxton
  • Signs you’re not getting enough vitamin B12 | Dr Carrie Ruxton
  • Is a dairy-free diet healthy? |Dr Carrie Ruxton
  • What is inflammation and which foods reduce it?| Dr Carrie Ruxton

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.



Siemens Healthineers

NEW online magazine channel 

#clinical professional #healthcare manager #pharma

News & Stories: In-depth information – convincing facts and figures
Explore an online magazine tailored to the needs of healthcare managers and clinical professionals

Siemens Healthineers
Shared knowledge and cross-border collaboration are shaping tomorrow’s world of diagnostics and therapy. The new online magazine channel, News & Stories, features knowledge and experiences shared by clinical professionals as well as valuable market insights in healthcare.
News & Stories provides you with this valuable knowledge.

Siemens Healthineers ~ News & Stories – Online magazine channel 

This email was sent by:
Siemens Healthcare GmbH | Henkestr. 127, 91052 Erlangen, Germany

Information for healthcare professionals. The Siemens Healthineers newsletter and websites, including but not limited to siemens.com/healthineers and its affiliated sites, provide an online resource for healthcare professionals





Some more picks from our editor Rie 

Credit: National Cancer Institute


BCG vaccine leads to long-term blood sugar improvement in type 1 diabetes patients  |   Massachusetts General Hospital |  21 June 2018


‘Long-term follow-up of participants in clinical trials of a generic vaccine to reverse advanced type 1 diabetes finds significant clinical benefits, including restoration of near-normal blood sugar levels.’ 

Read more via this link  >>>


MIT scientists discover fundamental rule of brain plasticity
A dendrite and its spines, reconstructed with electron microscopy (right) after it was imaged with two-photon microscopy in the intact brain (left). Credit: Mriganka Sur, et. al.

Scientists discover fundamental rule of brain plasticity | Picower Institute at MIT  |  21 June 2018

Taken from opening paragraph:

‘In a new study in Science, researchers at the Picower Institute for Learning and Memory at MIT demonstrate for the first time how this balance is struck: when one connection, called a synapse, strengthens, immediately neighboring synapses weaken based on the action of a crucial protein called Arc.’


Severe stress may send immune system into overdrive
(HealthDay)—Trauma or intense stress may up your odds of developing an autoimmune disease, a new study suggests. Image from site of post on medicalexpress.com

Severe stress may send immune system into overdrive | Steven Reinberg | Healthday Reporter | 19 June 2018

The above articles were all sourced from >>>

Thank you Rie 🙂



#Arthritis  #Arthritis #PatientVoice #Patients 

Best Exercises for RA | Arthritis Foundation | 25 June 2018

“Here are some ways to get moving, incorporating a mix of flexibility, range of motion, aerobic and strengthening exercises.”

Learn which exercises are best for RA, such as:

Stretching, Walking, Aquatic exercises, Yoga and Tai-Chi


Manage Your Stress Manage Your Arthritis | Arthritis Foundation | 21 June 2018

Headlines  >>>

  • Five Positive Ways to Boost your Mood and Relieve Stress and Pain
  • Art Therapy to Ease Stress
  • Find Your Inner Peace
  • Breaking the Pain Chain Toolkit

Follow this link to read more  >>>

Visit The Arthritis Foundation website to subscribe to their newsletters and to find all kinds of information and support >>>

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


#chronicpain #patients #diagnosis #copingstrategies #acceptance #survey #patientvoice

Migraine and Headache Progress Noted at AHS  |  Ed Coghlan  |  via National Pain Report | 28 June 2018

Migraine and Headache Progress Noted at AHS


After the Diagnosis: Finding a New Normal While Living With Chronic Pain| Michelle Peterson | via National Pain Report | 23 June 2018



Survey Shows Chronic Pain Community Wants Alternatives |  Ed Coghlan | via National Pain Report | 23 June 2018


Visit the National Pain Report website for more readables and opt-in for their newletters  >>>




Connecting You to the Chronic Illness Community




RELIEF Newsletter  |  June 19, 2018

RELIEF is a service provided by the IASP Pain Research Forum

New This Month

  • When the Immune System Attacks Its Own Proteins, Pain Can Emerge
  • Studying Sleep and Pain in Mice: A Chat With Alban Latremoliere
  • NIH Announces HEAL Initiative to Combat Opioid Crisis

Did You Miss?

  • Could Cannabis Legalization Help Ease the Opioid Crisis?
  • Sex and Gender Differences in Pain: A Chat With Edmund Keogh
  • Stopping a Pain Memory Before It Forms: A SPOT-ON Approach

You can read all of the above by following this link >>>

RELIEF Newsletter – June 19, 2018

June 2018 Highlight:
NIH Announces HEAL Initiative to Combat Opioid Crisis

Spread the Word about RELIEF

Please let your colleagues and friends know about RELIEF. 

Please pop along and sign up for the newsletter and content alerts HERE.

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

Very soon IASP Pain Research Forum. 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



#hearthealth #bhf  #healthmatters  #healthyheart #heartdisease #younghearts

#food #nutrition #recipes #healthy #summer #patientjourney #patientVOICE #greentea

British Heart Matters – magazine |  Does green tea really help your health? | British Heart Foundation  |  16 June 2018

Intro > Does green tea reduce your heart risk?:

‘Recent news stories have suggested that drinking green tea could reduce your risk of heart attack or stroke. Before you put the kettle on, we look at how reliable the claims really are.’

Headlines  >>>

  • 7 healthy recipes to enjoy this summer

Now that the weather’s warming up, it’s time to make the most of fresh seasonal fruit and vegetables. Why not try out some of our delicious heart-healthy summer recipes?

  • A patient’s diary of heart bypass surgery
  • Does green tea reduce your heart risk?
  • Should you sign up to an online GP?
  • Learn how we support young heart patients
  • Recipe of the week:  Fresh strawberry scones


Popular in the last 7 days >>>

1. Watch: What are free sugars?

2. 10 things to do in a park this summer

3. Quiz: How healthy are you really?

4. 6 things you need to know about high blood pressure

5. Can eating an egg a day reduce your risk of heart diseases?  (see this post from the last ‘Heart Matters’ underneath the post below)

Do you know someone who could benefit from receiving Heart Matters? Encourage them to sign up here.

Sarah Brealey

Heart Matters Editor


#hearthealth #bhf  #healthmatters  #healthyheart #heartdisease

British Heart Foundation |  Keep hearts beating and blood flowing | 13 June 2018

It’s not too late to choose a fundraiser, so get your FREE FUNDRAISING KIT get going and make your summer count! Every pound you raise will help fund vital research, giving hope to the 7 million people in the UK living with heart and circulatory diseases, including stroke, vascular dementia and diabetes.

You can get you fundraising kits via the following BHF newsletter link  >>>

Why not visit the website and register for ‘British Heart Matters’ magazine and newsletters  >>>

The British Heart Foundation >>>

British Heart Foundation is a registered Charity No. 225971. Registered as a Company limited by guarantee in England & Wales No. 699547. Registered office at Greater London House, 180 Hampstead Road, London NW1 7AW. Registered as a Charity in Scotland No. SC039426



#EDS #raredisaease #ehlersdanlos #webinar #international #EDSnews


CONNECT ~ The Ehlers-Danlos Society International Newsletter | Medical Professionals Directory, Gut and EDS Webinar, and more!  | 17 June 2018

Headlines  >>>

  • Introducing our Medical Professionals Directory
  • VEDS Focus: To Shine Forth, Head Held High
  • Free Webinar, “Gut Involvement in EDS”
  • EDS and Exercise | by Jeannie Di Bon
  • Register for the 2018 Ehlers-Danlos Society Global Learning Conference
  • Register for Rarer Types Day
  • New Ehlers-Danlos Society Stores Launched
  • UK Women Build EDS Awareness

You can read all of this by visiting the following link >>>

CONNECT ~ The Ehlers-Danlos Society International Newsletter

You can keep up to date with all the news via Ehlers-Danlso Society by visiting their website and opting in for their newsletters >>>




#NOTjustPatients #socialmedianetwork #digitalhealth #advocacyplatform #MAYOclinic #MCSMN

Mayo Clinic Social Media Network (MCSMN)

“After being, recently, introduced to this advocacy platform I can thoroughly recommend folks joining and making use of the Network to help empower themselves, and those of others.

I have been a fan of MAYO clinic for years so am really grateful to have access to such a great platform, especially not being a US resident but rather from UK.  However, FibroFlutters do have many readers from the US and helping to provide you with safe places to go to online holds as much importance to us as finding safe places for our own UK readers to go to.

There’s access to discussions, webinars & MCSMN Blog  depending on membership selection from Free, or, Premium.  Please note that e-patients and students receive a special rate.

I certainly look forward to using it more, and hopefully making a few new friends along the way.”

Carole Scrafton ~ CEO FibroFlutters / Founding Five Member

Rie our new editior is also a member of this network


Do you think this is a network for you?, or maybe you know someone else who might benefit from it’s services?

You can join the MCSMN via the following link >>>


Very soon Mayo Clinic Social Media Network (MCSMN) 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


“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




New evidence sheds light on how Parkinson's disease may happen
Dr. Hugo Bellen. Credit: Baylor College of Medicine

#Parkinsons #NewEvidence #Medicine

New evidence sheds light on how Parkinson’s disease may happen | Baylor College of Medicine |  14 June 2018, 

Opening sentence:

‘Researchers at Baylor College of Medicine and Texas Children’s Hospital have identified unexpected new key players in the development of an early onset form of Parkinson’s disease called Parkinsonism.’

Read more via this link  >>>

Follow this link to find out about Baylor College of Medicine >>>

For more Medicine & Health related news visit the medicalxpress website where you can also opt-in for newsletters  >>>




#BookReview  #chronicpain #paincompanion #painbook #productreview

Book Review: The Pain Companion |  Ribbonrx | 12 June 2018

An Introduction to ribbonrx.com   >>>


I would like to thank New World Library for contacting me and providing a copy of The Pain Companion by Sarah Anne Shockley in exchange for an honest review.

Visit Ribbonx’s blog on wordPress for most posts >>>


#survey #bbqsurvey #BBQ

Patient ~ Take part in our BBQ survey | 15 June 2018

Summer is upon us, and so is a new wave of people opting for a meat-free diet. We want to know if vegans and vegetarians are well catered for at traditionally meat-heavy barbecues.

The survey shouldn’t take more than a couple of minutes to complete and questions are relevant whatever your dietary choices. All responses are completely anonymous.

To take part follow this link  >>>

Patient ~ Take part in our BBQ survey

#neurosciencenews #neuroscience

Neuroscience News via ~ Neuroscience Newsletter | Headliner:   Genes Associated with Infantile Forms of Schizophrenia Identified – Neuroscience News – Neuroscience News| 25 June 2018

Neuroscience Newsletter

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. 

Social Bonding Key Cause of Football Violence  2018-06-23
Researchers say social bonding and the desire to protect or defend other fans may be a main motivation of football hooliganism.
Why Our Brains See the World As “Us” Versus “Them” 2018-06-24
Researchers say our neural circuits could be responsible for why we find comfort in those who are similar to us and why we are often uneasy with those who might differ from us.
Gut Bacteria Influences Metabolism Through the Immune System  2018-06-24
Digestive enteroendocrine cells use an innate immune pathway to respond to good bacteria by fine tuning metabolism to diet and intestinal conditions, a new study reveals.
Could Playing Fortnite Lead to Video Game Addiction? The WHO Says Yes, But Others Disagree  2018-06-23 
Despite the WHO recently recognizing ‘gaming disorder’, researchers say only 1% of gamers may fit the criteria for diagnosis. A new paper looks at the positive, and negative, implications of gaming.

Read more neuroscience news via this link where you can also opt-in for newletters like this one>>>


Neuroscience News |  Neurology  |  Robotics |  Psychology  |  Submit News


Neuroscience News
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The Woodlands Texas 77381



World Health Organization Newsletter |  Hot topics this week in health  |  15 June 2018

World Health Organization ~ Hot topics this week in health



#PHARMA #pharma #pharmanews #pharmaphorum

#medicalinnovation #blockchain #healthcare #nanotechnology #medicine #realworld

Deep Dive Magazine ~ Future Pharma 2018| Pharmaphorum  | 6  June 2018

“As pharma’s model is increasingly disrupted, how will health care and drug development progress? Click the button to read our preview article from the Medicines Discovery Catapult.” Quoted from the cover

What you can read about via the link below  >>>

  • Chris Molloy, Medicines Discovery Catapult, explains why the future of medical innovation lies with the industry’s SMEs
  • Karen Taylor, Deloitte, offers six predictions for the course of our industry into 2022, both evolutionary and revolutionary
  • How Blockchain could enable a truly global healthcare ecosystem
  • And a look into real-world examples of how nanotechnology is now advancing medicine, and the challenges faced
  • Sign up here to ensure you receive our next Deep Dive Oncology special report from ASCO when it is published at the end of this month, and future issues free on publication.You can read our previous editions here: Deep Dive: Patient CentricityDeep Dive Market Access II.

If you like what you see then you can subscribe to the ‘Deep Dive’ magazine and daily updates via the Pharmaphorun website.

Link to the magazine >>>

Sign up for the pharmaphorum daily newsletter and /or the ‘Deep Dive’ magazine via this link  >>>

Kind regards
Adam Jeffery
Commercial Director, Deep Dive

Copyright © 2018 pharmaphorum media limited, All rights reserved.
Subscribed to receive Deep Dive via registration form.

A fabulous pharma magazine!


#clinicalresearch #patients #patientparticipation #clinicaltrials #painmedicine #futureofpharma #whywedoresearch

Patients, Power, Participation: How Enrolling in Clinical Trials Can Help Ensure That The Future of Pain Medicine is Now | SKILLFULLY WELL & PAINFULLY AWARE | KATARINA ZULAK  | 7 June 2018


‘Participants in clinical trials have the opportunity to access cutting-edge therapies before they are made widely available, often at leading medical facilities. Experimental treatments can be appealing to individuals who have failed to benefit from conventional treatments. There is no cost to participate in medical research and health insurance is not required. Additionally, some studies compensate individuals who join the clinical trial.’

About Katarina  >>>

This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials.

Visit the homepage for more blog posts by Katarina >>>



OA and your lifestyle
constantly texting?!

#arthritis #osteoarthritis #lifestyle #knucklecracking #texting #highheels #vitaminE

Arthritis Foundation E-news | Lifestyle Factors & Osteoarthritis Outcomes | Five lifestyle factors that may be linked to OA.

Here are five lifestyle factors researchers have studied to see if they’re linked to OA:

  • Besides possibly irritating those around you, can knuckle cracking lead to the disease?
  • If your child is constantly texting, is the development of OA more likely in his or her future?
  • Can wearing high-heeled shoes contribute to an OA diagnosis?
  • Is high-impact, weight-bearing exercise helpful or harmful?
  • Can a diet rich in vitamin E reduce the risk of OA or its progression?

‘Managing your arthritis – and the pain and restrictions that come with it – is much easier if you know what to avoid and what can be beneficial. We want to arm you with useful information that helps put you in control!’

Arthritis Foundation

Original posted on Arthritis Blog Home »  Osteoarthritis Blog Home  » Can Lifestyle Factors Influence Osteoarthritis Outcomes? | Arthritis Today Magazine  June 2017.

Visit the ‘Arthritis Foundation via the following link for more useful information, blogs, blog posts and there are also newsletters that you can opt-in for >>>


© 2018 Arthritis Foundation. All Right Reserved. 
1355 Peachtree Street NE – Suite 800 – Atlanta, GA 30309




Try This, Not That: JA Complementary Therapies  |  Arthritis Foundation E-newsletter | 6 June 2018

JA Alternative Treatments

Complementary Therapies for JA  |  Try this, not that: find out which therapies to try and which ones to avoid.

Many families turn to complementary therapies to help ease the pain of a child with arthritis.

That can be a good thing – just be sure whatever you’re considering works for your situation.

  • Exercising with free weights and activities like jumping rope can improve both physical and emotional health without increasing pain. But avoid high-impact sports.
  • Relaxation exercises may diminish pain intensity … and they cause no negative side effects.
  • Water therapy is a good way to limber up stiff joints in the morning, and relax tight, aching muscles at bedtime.
  • Massage can relax muscles, lessen pain and improve circulation.

Learn all about complementary therapies for JA.

They may provide you with new methods to help manage your child’s pain.

© 2018 Arthritis Foundation. All Right Reserved. 
1355 Peachtree Street NE – Suite 800 – Atlanta, GA 30309




Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | June 2018

Harnessing a collective focus to transform MSK services

Who are ARMA? >>> 

About ARMA

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

  • 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.



J U N E is Migraine & Headache
Awareness Month!

#chronicillness #healthadvocacy

#Migraine #ChronicPain  #Migraineawareness

The Migraine Mantras | May E-Newsletter | 16 May 2018

The Migraine Mantras ~ May E-Newsletter

The Migraine Mantras have partnered with Chronic Migraine Awareness Inc.

for #MHAM18!

Find out how you can get involved via visiting the link above


eyeforpharma logo

#pharmanews #eyeforpharma #pharma #tech 

Why MSLs And Sales Reps Should Join Forces | Katie Osborne  | eyeforpharma |  26 June 2018

The case for aligning MSLs with sales reps is strong — if both sides play ball.

Artificial Intelligence: The Counter-Argument |  Adam Chapman | eyeforpharma |  7 June 2018

AI is being touted as the doctor’s new lifeline — we put this proposition to a skeptical doctor.

Sizing Up Pharma’s Tech Maturity |  | eyeforpharma |  1 June 2018


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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Upcoming events


Philadelphia | Nov 14, 2018 – Nov 15, 2018

Including the ‘Impatient’ conference where petients have set the agenda and ask pharma the questions!

Get your brochure via my post here >>>



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.




#NHS70 #NIHR  #IAmResearch

Please sign and support new research

Thunderclap ~ NIHR I Am Research & NHS70 |  by The National Institute for Health Research (NIHR) |

Thunderclap ~ NIHR I Am Research & NHS70

NIHR I Am Research & NHS70

I share this campaign as a Patient Research Ambassador for NIHR #PRAI

Carole Sian Scrafton ~ CEO FibroFlutters / Founding Five Member FibroFlutters / Patient Group Leader / Patient / Patient Expert

#ResearchAdvocacy #HealthAdvocacy #PatientAdvocacy



#EatingDisorders #diversity #bipolardisorder  #bipolar  #selfcare  #mentalhealth  #mentalhealthawareness  #patientvoice  #themighty #depression

E-news ~  Mental Health on The Mighty  | Theme  ~ Why does diversity matter in mental health anyway? |   16 June 2018

 Headlines  >>>

Take care of yourself

Mental Health Editor at The Mighty

If you visit ‘The Mighty’ Home Page you can join in by opting-in for e-newletters, follow specific health conditions and / or different writers / contributors.  You can post your blog posts and contribute too  >>>



#MEAction Indiegogo campaign

“We need to raise $100,000 through this Indiegogo campaign to support our work for the remainder of the year to expand our reach, build community, increase our advocacy, educate doctors and scientists, and inspire new researchers and clinicians to join the field. Here is what your support can help us achieve.”

#MEAction Indiegogo campaign

#ME It is way past time for recognition, ME must be taken seriously!

Visit #MEACTION website and join many other ME and CFS patients >>>





#elderlycare #healthcare #postopcare  #advancedsurgery  #AgeUK  #domiciliarycare #HomeCareSolutions #HomeCare

‘What good is advanced surgery if we can’t even offer proper homecare?’  |  Anna Bawden and Nicola Slawson | The Guardian  |  30 May 2018

Opening paragraph:

‘Almost 1.2 million people aged over 65 do not receive the support they need with essential daily tasks such as getting washed and dressed or preparing meals, according to Age UK. The perilous state of the domiciliary care sector, which provides support in people’s own homes, is one of the main reasons for this, the charity says.’

Read more via the following link  >>>

About the Authors  >>>

Visit The Guardian for more news via the following link where you can also opt-in to subscribe, and be a supporter, like I do and be kept informed of latest news and also their latest offers >>>

Note taken from ‘The Guardian’ website to its readers
“Thank you to the many people who have already supported us financially – your contribution is what makes stories like you’ve just read possible. We increasingly need our readers to fund our work so that we can continue holding power to account and producing fearless journalism.” From the Guardian

Even as little as £1 can help them make a difference!



#Campaign  #Petition #CarersTrust #GreenPaper2018 #elderlycare #careworkers #support

Meet your MP about the social care Green Paper 2018 | Carer’s Trust

The Government has promised to consult in 2018 on a long-term solution to social care funding for older people in England in a Green Paper.

If you’re a carer – why not meet your MP and tell them why the Green Paper has to include support for carers?

Meet your MP about the social care Green Paper 2018

Visit the ‘Carer’s trust’ website for more care news and opt-in for e-news  >>>

Carers Trust believes in a world where the role and contribution of unpaid carers is recognised and they have access to the quality support and services they need to live their own lives.


#CarersWeek2018  11th – 17th June



#healthcare #healthcareprofessionals #HCP #MSA

 Multiple System Atrophy Trust | Health and Care Professionals Study Day

We are pleased to announce our next study day for Health and Care professionals will be held in Newcastle on 11th October 2018.

Multiple System Atrophy Trust | Health and Care Professionals Study Day

About the Multiple System Atrophy Trust  >>>




#HealthAdvocacy #healthcare #patients

Health Hats  |  You say you want a revolution  |  By Danny van Leeuwen  |  27 May 2018


‘One of the things that Victor said was that reformers are important, but healthcare is not designed for health and wellness, care and kindness. The entrenched forces will not fundamentally change with reform. It needs a revolution, a patient revolution. I’ve never been good at putting other people’s labels on myself – I don’t know if I’m a reformer or a revolutionary. During my professional and now activist career, I’ve seen myself as a catalyst for change – sustainable change that continues when you’re gone.’

Visit Health Hats and opt-in for their new posts via e-mail >>>




#MEActionDaily Digest: It’s Not “All in My Head”: Living with a Misdiagnosed Disability Five Years on. Volume Two   | 23 May 2018

Read: Volume One here. 

Other headline:

  • Who is advising the Australian government on ME and CFS research and treatment guidelines?

Catch up on the latest actions and news:

  • The NIH Plan for ME is Dismal
  • Calling all Patients: Fill Out the Research Survey about PEM
  • Just Invisible: Medical Access Issues for Homebound/Bedridden People
  • Inquest Rules Merryn Crofts Died Due to Severe ME
  • UK Call to Action: Ask Your MP To Sign EDM 1247!

Visit #MEAction website and register, you can also opt-in for the ‘Daily Digest newsletters  >>>



Get involved with #healthresearch in #Salford and #Manchester

Are you interested in #research?

Would like to get more involved, or know what research is going on around you?

Visit The ‘Citizen-Scientist’ website and take a look around, if you like what you read you can opt-in for newsletters  >>>


About #CitizenScientist  >>>


A CURRENT study opportunity:  Testing a new technology to reduce chronic pain

Study summary
The Human Pain Research group based at Salford Royal is trying to develop new technologies that can measure and treat changes in the brain that might contribute to chronic pain.

The research team are exploring a new approach aimed at reducing the unpleasantness of pain for people living with fibromyalgia and/or osteoarthritis using sound stimulation.

 Citizen-Scientist Tags ~   , , 

Read more via this link  >>>


Posted on 14th March 2018 by Jess Zadik


A study update:  Cloudy with a chance of pain – preliminary findings

Citizen-Scientist Tags ~    

Cloudy with a Chance of Pain is a large smart-phone based research study examining the link between weather and pain. 

Read more via this link  >>>


Posted on 14th March 2017 by Natalie Balmain



Im-patient UPDATE 

Thankyou to everyone…

…who has participated in the design of ‘Impatient’-London event in October, and the ‘Impatient’ Philadelphia event also in October.

You can now take a look at the brochures for ‘Patient Summit Europe’, ‘Patient Summit USA’ and book your places via the following links >>>

Get your copy of the brochure now – for the full details of the agenda and “im-patient” summit

Get your copy of the brochure now – for the full details of the agenda and “im-patient” summit.


We’re putting on a pharma conference where patients are the ones to design, create and implement the programme. This way, patients really are setting the agenda.


The Im-Patient Summit - Logo



#Diabetes #advocacy

Diabetes Blog – Happy-Medium.net | WEEKLY DIGEST | StephenS  |  4 June 2018


  1. One at a time.
  2. My turn.
  3. You do You.

Read more via this link >>>

Visit Stephens blog for more posts >>>



#GDPR & the new Privacy Laws.  What do they mean for you?

What’s changing and what’s not under new data privacy rules | Anick Jesdanun  | physorg.com  | 18 May 2018 


‘Not much will change for you, at least right away; companies will keep on collecting and analyzing personal data from your phone, the apps you use and the sites you visit. The big difference is that now, the companies will have to justify why they’re collecting and using that information.’

Read more by following this link  >>>



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



Latest!  #stressresources #stress #mindfulness #meditation

May 2018 Newsletter from Stress Resources  |  Pamela Ressler  |  May 2018

Quoted from the home page:

‘Stress Resources specializes in providing individuals and organizations with strategic, sustainable tools to build resilience and mindfulness. Our goal is to empower your creativity, productivity and leadership’  

For more articles and information visit the Stress Resources website where you can also sign up for their newsletter  >>>







#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?!

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

Visit Rock Off Fibro on Twitter  >>>


Newsletters via News Medical

Latest!  News Medical |Diabetes Newsletter | 11 June 2018 

News Medical |  Endocrinology  Newsletter |  10 April 2018


Latest!  News Medical |  Respiratory Diseases  |  11 June 2018


Latest!  News Medical |Sleep Disorder Newsletter | 4 June 2018


Latest!  News Medical | Pediatrics Newsletter | 13 June 2018



In the Chillout Lounge!

“Peace & Harmony” Beautiful Meditation Music, Relax Mind Body, Healing Music, Relaxing Music | Meditation and Healing|  23 June 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 twice a day from here, our website/blog, Morning and Evening Post 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.

Here’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 across the globe

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

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 ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018


MANY THANKS in advance for your understanding –

from the administrator – fibrofly73


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