#chronicillnessVOICE | Morning Edition | 6 June 2018 ~ a health newsletter for everyone! #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


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!




Daily! #disability #disabilitynews #chronicillness

My Disability Matters News |  See the latest headlines | 6 June 2018

Main Headline  >>>  

TUC Disabled Workers’ Conference: Government ‘has created hostile environment for disabled people’

Other Headlines for today >>>

  • Relegated Premier League clubs ‘should use funds on disability access’
    Some of the country’s top football clubs have been told …
  • Trio of disabled politicians welcome ‘partial victory’ on Access to Elected Office Fund
    The government would provide “up to” £250,000 to assist disabled …
  • Government continues to fail the blindness and low vision community
    The release of the Audio Description Working Group report this …
  • Motability faces calls to increase grants or cut prices
    The level of reserves held by Motability Operations – at …
  • DWP should think again on ESA backpayments and offer compensation
    DWP should reconsider its decision to offer only a partial …

Visit and opt-in here for Worldwide Disability Matters DAILY News  >>>



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  |  5 June 2018 

Headlines for today  >>>

  • For Teens, More Screen Time Tied to More Insomnia, Less Sleep
  • Trauma-Informed Care: Recognizing & Treating Toxic Stress, Part 1
  • Can Mental Health Conditions and Medications Be Blamed for Racist Comments?
  • What You See Isn’t Always What You Get: 3 Tips to Avoid Social Media Envy

Opt-in for newsletters > Home Page:




#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  >>>



Other Newsletters / Magazines / Blogs of interest including  > > >

In the Chillout Lounge!

Indian Meditation Music: 20 minutes Indian flute music, Yoga music, relax music, soothing music 49Y1 |  NuMeditationMusic |  10 May 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




#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




#chronicpain #patients #healthcarecomapanies  #discrimination #education #professionals

Do we need to educate the professionals?  | Steve Ariens | via National Pain Report | 5 June 2018


‘Now is the time for chronic pain patients to start contacting law firms and point out to them – EDUCATE THEM… all the patient abuse, neglect and discrimination that is going on at the hands of these corporate entities that are called “healthcare companies” – and individually these companies are harming hundreds, thousands or tens of thousands of chronic pain patients.’

Read more by the Author  >>>

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




#patientfocussed #chronicpain #drugdevelopment #public meeting

Public Meeting for Patient-Focused Drug Development on Chronic Pain |  Ed Coghlan  |  National Pain Report  | 4 June 2018

Opening paragraph:

Over 1,000 people—many of whom are National Pain Report readers—have filled out a survey designed to inform an FDA Patient Meeting on July 9, 2018. The official title of the event is a Public Meeting for Patient-Focused Drug Development on Chronic Pain.

About the Author: Ed Coghlan

If you haven’t completed the survey yet, it only takes about 30 minutes to take and you can do that via the following link  >>>




#hearthealth #bhf  #healthmatters  #healthyheart #heartdisease

#nutrition #educational #freesugars #cardiacarrest #patientvoice #recipe 

British Heart Matters – magazine |  Carole, could an egg a day help your health? 🍳 | British Heart Foundation  |  4 June 2018

“Information, inspiration and support for a heart-healthy lifestyle”


Headlines  >>>

  • Could an egg a day keep the doctor away?
    • New research has suggested that eating an egg a day could help to reduce your risk of heart disease and stroke. We delve deeper to discover the truth behind the headlines.
  • Watch an animation discussing The truth about ‘free’ sugars.
    • We all know we need to avoid eating too much sugar. But do you know what types to avoid? Our animation explains.
  • What I’ve learned from my cardiac arrest
    • In a letter to her younger self, nurse Sarah Woodford shares what it feels like to think you’re dying, and the things she wishes she’d known before her cardiac arrest.
  • What really counts as your 5-a-day?
    • Knowing what counts as one of your 5-a-day – and what doesn’t, can be tricky. We debunk some of the myths with a list of 12 things that really shouldn’t count as your 5-a-day.
  • Recipe of the week |  Salmon with honey-roast beetroot salad
    • Create this light and fresh salad for lunch or dinner – it’s perfect with crusty bread and a tangy lemon dressing.
  • Tell us what you think of Heart Matters
    • You could win a £50 John Lewis or Marks & Spencer voucher by telling us what you like about Heart Matters, and what you’d like to see more of in the magazine. Take the survey, help us improve and you could be a winner!

Popular in the last 7 days  >>>

  1. How much salt is in your restaurant meal?
  2. 8 ways to stay slim for life
  3. Watch: What’s the difference between a heart attack and a cardiac arrest?
  4. 10 surprisingly sensational salad ingredients
  5. Blood pressure research

Read all the above via the following 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




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.




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

#Migraine #ChronicPain  #Migraineawareness

Weekly digest for The Migraine Mantras  | 4 June 2018

Headlines  >>>

Ways I’ve Healed My Mental Illness  | By   Alisha

You Are Not Alone | By   Winslow 

Being a “Zebra” with Migraine   |  BY JORIEJEANNETTE,SARINA

Chronic Pain & Yoga: My Journey  |  By María –

Visit the ‘MigraineMantras’ WordPress blog for more posts and opt-in for their Weekly Digest newsletter  >>>




#Migraines #guilt #hurdles #copingstrategy

STUCK IN A GUILTY BUBBLE | VICKY (GUEST WRITER) |  Migraine Mantras  |  25 May 2018

Opening paragraph:

‘When suffering from a chronic illness, the feeling of guilt is one you can often find yourself getting a little too used to. Although, deep down you know things are not your fault or things are not always in your control, you cannot help that guilty feeling in the pit of your stomach when you are not always one hundred percent yourself. We all have bad days and that is completely okay, but it is accepting that it is okay that is the hurdle and celebrating the positive things.’

Read more via this link>>>

Visit the ‘MigraineMantras’ WordPress blog for more posts and opt-in for their Weekly Digest newsletter  >>>




#neurosciencenews #neuroscience 

Neuroscience News via ~ Neuroscience Newsletter | 4 June 2018

The latest headlines over at ‘Neuroscience News’

Goodbye “Stress Granules” | 2018-06-03 
Researchers shed light on how stress granules, enzymes linked to a range of neurodegenerative diseases, are formed and how they can be reduced.

Drowsy Worms Offer New Insights Into the Neuroscience of Sleep | 2018-06-03 
A new study could offer insight into human glial cell function and reveals a relationship between movement and sleep.

New Tool Gets Children’s Perspectives on Own Mental Health | 2018-06-03 
A new tool called PSYCHLOPS Kids is able to capture a child’s perspectives of their mental health problems and express themselves more fully than with professional intervention.

AI Researchers Design ‘Privacy Filter’ For Your Photos | 2018-06-03
Using an AI technique called adversarial training, researchers have developed a new algorithm that dynamically disrupts facial recognition systems, which may help to maintain privacy.

Transgender Brains More Like Their Desired Gender From Early Age | 2018-06-03 
A new study reports transgender people have brain activity and structure during adolescence that more closely resembles typical activation patterns of their desired gender.

NFL Teams Play Better During Night Games Thanks to Circadian Advantage | 2018-06-04 
A new study reports NFL teams perform better during night time games, thanks to a circadian advantage. Winning teams who play late evening games have fewer turnovers and players had better circadian regulated awareness than those who play in afternoon games, researchers report.

New Algorithm Determines Ideal Caffeine Dosage and Timing For Alertness | 2018-06-04 
Researchers have developed a new algorithm that can determine the ideal time to consume, and correct dosage of caffeine that can maximize alertness under sleep loss conditions.

A Sense of Disgust in Bonobos? | 2018-06-04
Researchers report bonobos express disgust when presented with contaminated food. The study reveals their curiosity transforms into caution when food is presented near feces or a bad smell.

A Potential Achilles Heel in Brain Cancer | 2018-06-04 
A new study in PNAS reports blocking the expression of MDA-9/Syntenin forces glioma stem cells to lose their ability to induce protective autophagy.

New Optical Probe Allows Ultrafast Imaging of Dopamine in the Brain | 2018-06-04 
Researchers have developed new fluorescence sensors that are able to record dopamine activity in the living brain. The tool will help further understanding of dopamine’s role in reward and motivation.

In MS, Disintegrating Brain Lesions May Indicate the Disease is Getting Worse | 2018-06-04 
A new study reports the atrophy of brain lesion volume predicts the development of more physical disabilities associated with multiple sclerosis.

How Does Alcohol Influence Alzheimer’s Development? | 2018-06-04 
A new study reports alcohol may impede the clearance of amyloid beta, a protein associated with Alzheimer’s disease, in the brain.

Simple Touching Fosters Wellness and Relieves Stress For Couples | 2018-06-04 
Researchers report couples who frequently hug or hold hands have lower cortisol levels, have decreased symptoms of physical problems and sleep better.

Why Do Some Sleep Deprived People Experience Worse Cognitive Function Than Others? | 2018-06-04 
A new study reports microRNAs in the blood are altered as a result of sleep deprivation. Researchers used MiRNA alterations as a biomarker to determine cognitive performance following psychological stress and sleep loss.

Gene Linked to Intellectual Ability Affects Memory Replay: Mouse Study | 2018-06-04 
SCN2A, a gene commonly associated with intellectual ability, plays an essential role in memory formation and replay, a new study reports.

Read all the above & the latest Neuroscience News by visiting their website by following this link, you can also opt-in for e-mail updates like I have for their latest headlines >>>




#pharmanews #eyeforpharma #pharma #tech 

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

About the Author  >>>

Get the latest industry insights via eyeforpharma in your inbox:

Follow eyeforpharma on Twitter:

Like eyeforpharma on Facebook:

Subscribe to eyeforpharma youtube channel:


eyeforpharma logo





#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




#medicaldevice  #newsmedical  #medicalnews  #medicaltech  #technology #healthcare  #pharma 

Latest!  News Medical | |  The latest medical device news from News Medical |  1 June 2018 Edition


  • High Voltage Power Supplies Selection Guide
  • Snail’s eye inspires new type of RIOCATH urinary catheter
  • Uterine Artery Embolization: Technique and Complications
  • Novus Varia Lumenis Multicolor Photocoagulators from Lumenis
  • X-CLARITY™ Tissue Clearing System II
  • Sonohysterography – Technique and Indications
  • Automated Hit Picking and IC50 Plate Preparation
  • Technique and Precautions During Hysterosalpingography
  • Titan Enterprises’ new MetraFlow ultrasonic flowmeter preserves process integrity

Read the articles listed above by following this link  >>>

Please visit the ‘News-Medical website where you will be able to opt-in for varying health related newletters  >>>

http://www.news-medical.netCopyright © 2000-2018
Privacy Terms and Conditions



#AI  #AItechnology #healthcare  #innovation  #medicalinnovation  #pharma  #tech  #science 

MedCity News | Top Stories E-newsletter  |  New $10 million fund for AI launches  |  2 June 2018


Bessemer Venture Partners unveils new seed stage fund to invest in AI-driven technologies for healthcare  |  By STEPHANIE BAUM  |  1 June 2018

Other headlines >>>

  • SPONSORED |  Access to Carriers Across the Nation Through a Single Point of Integration
  • SV Angel goes ‘back to basics’ as partners exit
  • Andy Slavitt, AVIA will team up to bring innovation to the Medicaid space
  • Right-to-try law intended to weaken FDA, bill’s author tells agency commissioner
  • SPONSORED  |  Hurry! Save $300 by 6/5 on MedCity CONVERGE, strategies and solutions in oncology innovation

You can read all the above articles via the following link  >>>

Opt-in for their new digest by visiting their website >>>

About MedCity  >>>



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

E-news ~  Bipolar Disorder on The Mighty  | Theme  ~ A selection of  posts RE: Self-care tricks for people with bipolar disorder  |   1 June 2018

4 Depression Self-Care Tips for When You Literally Cannot  |  Erica Chau  | 11 December 2017

About ‘The Mighty’ contributor  >>>


Self-Care Tricks I Practice for Bipolar Disorder  |  Katie Gallo  |  2 November 2017

About ‘The Mighty’ contributor  >>>


101 Self-Care Suggestions for When It All Feels Like Too Much  |   Annie Wright, LMFT  |  4 April 2016

About ‘The Mighty’ contributor  >>>


Sarah ~ Mental Health Editor at The Mighty, says 

I hope the self-care tips in this newsletter inspire you to take care of your needs this weekend. Whether you rest, have an adventure or get through some chores, I hope you get what you need.


Take care of yourself,


Quoted from the end of the ‘Bipolar Disorder on The Mighty’ newsletter


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  >>>



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

Main Headline: When that Little Voice in Your Head Is Mean | Migraine.com weekly | 30 May 2018

Headlines >>>

  • When that Little Voice in Your Head Is Mean | Holly Baddour | 24 May 2018
  • Returning to the Working World | Elizabeth Roberts-Zibbel | 23 May 2018
  • Wide Awake in the Middle of the Night | The Migraine Girl | 22 May 2018
  • No Nagging, Please and Thank You | Kyky Knight | 19 May 2018
  • What to Expect When You’re Expecting with Migraine? | Sarah Hackley \ 17 May 2018
  • Take the Clinical Trial Patient Experience Survey! | Editorial Team ~ Migraine.com 

Featured story  >>>

  • Constant Pain/Pressure Behind Both Eyes (Seeking Help)  |   jamminsport | 18 May 2018

Featured poll  >>>

  • Do you have irritable bowel syndrome (IBS) as well as migraine disease?

Read all of the above via this link >>>

Check out their website for information and more posts / articles.  If you enjoyed this newsletter you can opt-in for the magazine or newsletters via this link  >>>



#PETscans  #PET  #Cancer

Gallium PET Scans – Into the Unknown  |  Ronny Allan  |  31 May 2018


‘There’s a lot of excitement about the Gallium 68 PET Scan since it was approved by the US FDA. It’s not new though and has been in use in several countries (mainly Europe) for some time. It’s a ‘nuclear scan’ and can often form part of what is known as a ‘Theranostic Pair’ (i.e. in conjunction with a therapy – read more here).’

Read the post via the following link  >>>

Read more and opt-in for updates via this link >>>





#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  >>>





#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 >>>





#chronicpain #backpain #paintreatments  #patientvoice #chronicwarrior #fibromyalgia

Ice vs heat for pain, which works for you ~ Infograph | Barmac5 | backpainblog UK | 20 May 2018

Check our Bar’s WordPress Blog for more posts and useful reads >>>




#digitalhealthnews #digitalhealth #AI #analytics #digitalpatient 

Digital Health Newsletter | Digital Health | 31 May 2018

News Headlines  >>>

  • DIGITAL PATIENT:  Rust in peace: Hospital uncovers unusual 1990s employee
  • CLINICAL SOFTWARE: Orion Health cuts 177 jobs and posts $40m loss
  • AI AND ANALYTICS:  University College London Hospital explores AI possibilities
  • CLINICAL SOFTWARE:  Sunrises on new EPR deployment in Dudley
  • NEWS:  Four new integrated care systems announced by NHS England
  • CYBER SECURITY:  National data opt-out programme comes into force

Features  >>>

  • AI AND ANALYTICS:  Sweet dreams are made of this: Using virtual reality to improve mental health
  • FEATURE:  IBM’s Watson Health about ‘augmented intelligence for clinicians’
  • Upcoming Events:  Digital Health Summer Schools
  • Upcoming Webinars:  Building a digital NHS which empowers people to better manage their health and care

Link to the newsletter and links to 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



#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!



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

Latest issue!  NICE Newsletter | May 2018

Including their latest PODCAST:  Managing multimorbidity: putting patients at the heart of their care

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 >>>



#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



#CarersWeek2018  11th – 17th June

Get involved with events near you,why not check out if there is something happening close by?

Individuals and groups all over the UK are organising events to raise awareness for Carers Week 2018

If you’re planning an event or activity for Carers Week 2018, add it to the Carers Week map!


Visit the ‘Carer’s Week’ website for more care news & opt-in for e-news updates  >>>




#IASP #RELIEF #pain #chronicpain PainResearch #research

RELIEF | Newsletter | 30 May 2018


Features this month  >>>

  • May 2018 Highlight: 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 (see post below this one)

Follow this link for the newletter  >>>

PLEASE CAN YOU HELP! to spread the word about ‘RELIEF’, Thank you  🙂

Visit the Relief News for their latest headlines and you can also opt-in for their e-newsletter updates >>> 

Visit the ‘International Association for the Study of Pain website and opt-in for their e-news updates as well as find useful information  >>>

#research  #brain  #chronicpain  #painmemory  

Stopping a Pain Memory Before It Forms: A SPOT-ON Approach |  Nathan Fried |  Relief News 

Now, researchers report a novel strategy to stop a pain memory from ever forming in the first place, in a mouse study.  A new drug has been to found to halt the ‘creation of proteins that set pain in motion’, according to a recent study in mice.

Visit the Relief News for their latest headlines and you can also opt-in for their e-newsletter updates >>> 

To read about the research in more detail, see the related ‘Lost in Translation: Without New Proteins, Chronic Pain Cannot Take Off’, Nathan Fried on 21 Feb 2018 IASP Pain Research Forum news story here.





#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  >>>





#genderpaygap #medicine #jeremyhunt #femaledoctors #careerprogression #medicalhealthcare

Jeremy Hunt vows to tackle gender pay gap in medicine  |  Press Association |  The Guardian | 28 May 2018

Health secretary launches review addressing the obstacles female doctors face in their career progression

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!



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

Weekly Digest | Mayo Clinic Social Media Network (MCSMN)|  28 May 2018

“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


Link to the Weekly Digest for 28 May 2018  >>>

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 >>>




If We Don’t Ask, We Don’t Get and If We Don’t Tell, They Will Stop Asking | Terri Lewis, Ph.D.  |  National Pain Report  |  28 May 2018

Opening lines:

‘As many of you know, there’s suddenly a lot of interest in the opinions of chronic pain patients. Dr. Terri Lewis has been an advocate for the chronic pain patient—her own father and son fall into that category—and she writes tonight on the importance of the chronic pain community contributing to a number of surveys that are underway.’

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




#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




#MedicalProfessionals #Dermatologists 

#Rosacea  #skin #dermatology  #mentalhealth

The Psychosocial Impact of Rosacea: Should Dermatologists Be Concerned? | Suzanne Bujara | Dermatology Advisor  | 22 May 2018


‘Rosacea breeds low self-esteem, which in turn leads to social isolation.1 Historically, rosacea was thought to be a sign of psychiatric illness or alcoholism, which only contributes to existing poor perceptions of the disease.1 Anxiety associated with rosacea creates a vicious cycle, as embarrassment tends to exacerbate the physical blushing associated with the disorder.1’

Visit Dermatology Advisor for more readables aimed at PROFESSIONALS  >>>




#digitalhealthnews #digitalhealth #speechrecognition #medicalspeechrecogniton

Dictate.it launches next generation medical speech recognition | Digital Health | 22 May 2018

Quote from the text:

“The engine, a first for a UK health supplier, is available to all registered primary care practitioners on a free trial basis from the 22nd May 2018.”

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



Im-patient UPDATE 

Thankyou to everyone…

…who has participated in the ‘Impatient’ survey, your ideas and thoughts have been collated and are being discussed, by the Steering Group, already, for the ‘Impatient’-London event in October, and the ‘Impatient’ Philadelphia is now also developing/

Keep a check on how things are going by visiting the website



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 >>>


I love this!

#pharmavoice #health #socialcare #jargonbuster 

Health and social care jargon buster  |  A Prescription for M.E.  |  Emily Beardall  | 19 May 2018

Quotes from post:

This great A-to-Z from Think Local Act Personal is good to have handy:

Visit Emily’s WordPress blog for more information, news, and articles related to the medications and treatments for ME  >>>

About the Author  >>>



#STATnews  #FirstOpinion #FemaleLeaders  #Innovation #Biotech #Medtech 

STAT NEWS ~ First Opinion  | More female leaders will help drive innovation in the medtech and biotech industries | MELISSA BURSTEIN  |  15 May 2018

See what other news stories are under the category of ‘First Opinion’ by STAT news  >>>

Sign up for their newsletters when you visit the website via this link  >>>



Humira does not improve aortic vascular inflammation in psoriasis patients
Severe psoriasis. Credit: Penn Medicine


A bit of a blow?! #Research #aorticvascularinflammation  #Humira  # Psoriasis

Humira does not improve aortic vascular inflammation in psoriasis patients  | Perelman School of Medicine at the University of Pennsylvania  |  18 May 2018 

I have heard many of my fellow Psoriasis Warriors who love this medication for their psoriasis as it works wonders, apparently, so this is a blow regarding future treatment for ‘aortic vascular inflammation’,… but not overall. (my opinion of course but I’m not a scientist!).  Psoriasis is a chronic inflammatory skin disease that is associated with increased vascular inflammation.

Why not visit ‘Perelman School of Medicine at the University of Pennsylvania’ website and take a look around  >>>




#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  >>>



#Nutrition #Vegetarian #diet #Recipes #HealthyFood

Patient Newsletter  |  Subject:  Is it time to go vegetarian?  |  16 May 2018

Opening to newsletter >>>

‘The big benefits of a plant-based diet

It could be time to shift the focus on our plates and make room for plants. Such eating habits would lower the risks of diseases like type 2 diabetes, heart disease, stroke and certain cancers.’ 

Try something new for National Vegetarian Week


  • How to go vegan healthily
  • Is red meat bad for your health?
  • How to eat more vegetables without even realising
  • Can eating spicy food help you lose weight?
  • Sweet potato and spinach chilli recipe
  • Coconut energy balls recipe

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




#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  >>>







#EDSawarenessmonth  #EDS #HSDs #JHS #hypermobility #May2018EDS 

MOVING INTO THE LIGHT | The Invincible Summer | 15 May 2018

Opening paragraph:

May is Ehlers-Danlos Syndrome awareness month. I wrote this in hopes of giving a better understanding of how *I* have experienced EDS throughout my life; keeping in mind that EDS is a spectrum meaning some people barely have any symptoms and can live normally and some have more severe symptoms. – Author, Kathleen Elizabeth

Read more via the following link  >>>

Visit Kathleen at her WordPress blog for more posts and real-life reads  >>>

For EDS support – US – The Ehler’s Danlos Society >>> 

For EDS support – UK – Ehler’s Danlos Support UK  >>> 




#chronicblogger #painmanagement #science #technology #paindevice

I Told You I was Sick | My Review of the Benepod Pain Management Device | 15 May 2018


‘Since the rise of the opioid crackdown, more and more people just like you are seeking alternative pain relief. Dietary changes, supplements, and electronic pain relief devices are among the most popular choices for drug-free pain relief.

Benepod offers electronic pain management in a small, convenient, and affordable unit.’

Visit Jaime’s site for more reviews to read and sign-up for newsletters  >>>

  • itoldyouiwassick.info/
  • Jaime’s Disclaimer: I have been given a Benepod for review as a gift, but this has in no way influenced my comments on this piece.




How to gain control over #osteoarthritis #OA and keep it

Get and Keep Control of Your RA | Rheumatoid Arthritis Blog | Arthritis Foundation  |  14 May 2018 

Get and Keep Control of Your RA

When your disease is under control, you may be tempted to stop taking your medication. But doing so is NOT a good idea.

Advice from Arthritis Foundation


‘Most doctors begin hard-hitting treatment as soon as rheumatoid arthritis (RA) is diagnosed. Research shows that even in the first months after diagnosis, joint damage can occur if the disease is not treated aggressively, says Paul Howard, MD, a rheumatologist at Arthritis Health in Scottsdale, Ariz.’

Link to the post >>>

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


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



#PsoriaticArthritis  #Arthritis #PatientVoice #Patients 

Meet 3 People Living with Psoriatic Arthritis | Arthritis Foundation | 11 May 2018

Meet Richard, Nandi and Andre

If you have PsA, you might be inspired by the stories of three people living with the disease. 

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 >>>



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  >>>







Latest!  RONNY ALLAN – LIVING WITH NEUROENDOCRINE CANCER NETwork with ronny© | RonnyAllan.NET – Community Newsletter| 30 April 2018


Ronny’s Community Newsletter  >>>

 RonnyAllan.NET – Community Newsletter April 2018

Blog Home Page  >>>




#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 | 29 May 2018 


News Medical |  Endocrinology  Newsletter |  10 April 2018


News Medical |  Respiratory Diseases  |  29 April 2018


News Medical |Sleep Disorder Newsletter | 9 April 2018


LATEST!  News Medical | Pediatrics Newsletter | 25 April 2018


Change around in the Chill out Lounge!

Indian Meditation Music: 20 minutes Indian flute music, Yoga music, relax music, soothing music 49Y1 |  NuMeditationMusic |  10 May 2018

Why not visit NuMeditationMusic 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