#chronicillnessVOICE | 30 August 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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


It is taking longer than anticipated


In the Chillout Lounge!

“Remove Negative Thoughts & Subconscious Blockages” Meditation Music for Positive Energy

By  Meditation and Healing |  7 August 2018

Psst!  It’s at the end!!


Hot off the Press – #Oncology and #Haematology Updates! | 29 August 2018

European Medical Journal

Critical contributions to care.

Combat cancer and blood disorders with the latest EMJ Oncology and EMJ Hematology newsletter.

Read via this link >>

European Medical Journal ~ Hot off the Press – Oncology and Haematology Updates!

European Medical Journal | Part of the European Medical Group (ID: 08198092) | 88 Wood Street, London, EC2V 7RS (+44 (0) 1245 334450) | VAT No. GB144219234



#MultipleSclerosis  #MS  #MSresearch  #Research #Trial  #NIH  #newsrelease

Study finds multiple sclerosis drug slows brain shrinkage  |  News releases |  National Institutes of Health (NIH) | 29 August 2018

NIH-funded trial offers hope for disease with limited treatment options.


“These findings provide a glimmer of hope for people with a form of multiple sclerosis that causes long-term disability but does not have many treatment options,” said Walter J. Koroshetz, M.D., director of the NINDS.

Read the study via this link  >>>



#MEAction Team  |  Daily Digest: Community News Roundup – Aug. 2018  |  29 August 2018

Community News Roundup – Aug. 2018

Main headlines  >>>

Family, Friends and Allies for ME

Volunteer of the Month: A Healthy Ally

Catch up on the latest actions and news:

  • Stop CDC from Hiring Shoddy Contractor for ME Treatment Guidelines!
  • Enrolling: Stanford School of Medicine Brain Tissue Bank
  • Announcing Launch of the #MEAction Young Researcher Fellowship
  • The Truth Behind Netflix’s “Afflicted”
  • Do You Have MCAS? Fill Out this Survey.

Read all the above via this link  >>>

Our mailing address is:
3900 San Fernando Rd, Unit #1010
Glendale, CA 91204

Copyright © 2018 #MEAction, All rights reserved.


MedicineNet ~ Newsletter  |  Stages of Alcohol Use Disorder  |  30 August 2018


Alcoholism: Get Facts on Treatment, Signs and Withdrawal Symptoms
Alcoholism is a disease that includes alcohol craving and continued drinking despite repeated alcohol-related problems, such as losing a job or getting into trouble…

NEWS  >>>

  • U.S. Deaths From Suicide, Drugs Surpass Diabetes
  • More Evidence Ties Stress to Heart Trouble


  • Benzodiazepines vs. Cyclobenzaprine

Read all the above via the following link  >>>

FROM OUR WEBMD SPONSORS  arrow   Nursing and Rehabilitation Centers

MedicineNet’s Depression Center

‘MedicineNet’s Depression Center gives you all of the tools necessary to maintain a healthy body and mind…’

Read more and access the Depression Centre via the newsletter link above

MedicineNet respects your privacy – view our Privacy Policy
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© MedicineNet, Inc. All rights reserved.



NICE Newsletter |  NICE News | August 2018

This month’s podcast:  
Diabetes and weight loss, how do we get it right?


Join the conversation on Facebook: How should we respond to child abuse?

Quiz the panel on:
Wednesday 29 August at 1:15pm

A recording will be available afterwards.

Featured news  >>>

NICE would welcome further discussions about access to spinal muscular atrophy (SMA) drug nusinersen

Other news  >>>

Antibiotics should not be issued as first line treatment for a cough, says NICE and PHE

Feedback sought to allow life extending treatment on NHS for those with blood cancer

Blog  >>> 

Allied Health Professionals into action

The NICE impact on falls and fragility fractures

Events  >>>

NICE Into Action: FREE lunchtime webinar series for AHPs

Read all the above and much more via this link  >>>

Visit the NICE home page and opt-in for newsletters  >>>





Digital Health  |  NHS IT transformation with clinical software – what are the secrets?  |  28 August 2018

Attendance for NHS and public sector employees is absolutely free. Find out more on the Digital Health Rewired website.

Digital Health Digest | 23 August 2018

News  >>>

NEWS | £412.5m allocated to STPs for provider digitisation

DIGITAL PATIENT |  Push Doctor announces founder and CEO has stepped down

AI AND ANALYTICS |  Sensyne Health plans to raise £60m through floating on London Stock Exchange 

CLINICAL SOFTWARE |  NHS Digital tests waters for new £450m GP IT framework

INTEROPERABILITY |  Tech giants make interoperability pledge for US health data

Features  >>>

FEATURE |  The benefits of remote control at St Helens and Knowsley

FEATURE | Why we’re gathering around the NHS wireless at my GP practice

Upcoming Webinars  >>>

Digitally driven workflows and patient journeys – how can we get from ‘good’ to ‘great’? 

How NHS trusts can benefit from real-time data to improve cyber security

Read the above and more via this link  >>>

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



#PatientVoice  #Epilepsy  #chronicblogger  #EpilepsyAwareness  

Michelle’s story—seizing a cure | Featured on:  utphysicians.com


Posted on Tuesday, November 15, 2016, under Patient Stories

Michelle’s Foundation is there to raise awareness and educate people about epilepsy, if you are affected in some way by epilepsy why not pop along and say hello to Michelle for support.  Maybe you could even help out in some way and get involved 🙂

The Turning the World Purple Foundation  |  Epilepsy 


We are more than our diagnosis. Epilepsy is NOT who you are.

We are working to smash stigmas associated with Epilepsy through advocacy and education.



beautiful blur close up colors
Photo by Akshar Dave on Pexels.com


#EDS  #EhlersDanlosSyndrome  #HSD #HypermobilitySpectrumDisorder #Zebra

#Rheumatology  #MSK  #Musculoskeletal  #PatientSupport  #Professionals

#Research  #HealthInformation

The Ehlers-Danlos Society | CONNECT: Major research gift, webinars, and more! | 28 August 2018

Featuring  >>>

  • Ehlers-Danlos Society receives major gift to accelerate research into EDS and related disorders.
  • Join the EDS and Related Disorders Global Registry
  • Free Webinar: The Emotional Dimensions of EDS/HSD
  • Reminder: Free EDS and Podiatry Webinar Tomorrow
  • Newly diagnosed webinar recording available
  • Putting the Pieces Together

Read all the above via this link to the CONNECT newsletter  >>>

Are you someone with Ehler’s Danlos Syndrome (EDS), or Hypermobility Spectrum Disorder (HSD) related conditions and living in the US? Visit the The Ehlers-Danlos Society website for information, advice and #patient support via this following link.  You will be able to opt-in for the CONNECT newsletters and gain access to professionals, research, health information, and also others like yourself if you join in.

A great place for EDS,… and HSD’s

Here’s the link >>>


The Ehlers-Danlos Society
P.O. Box 87463
Montgomery Village, MD 20886
© 2018 The Ehlers-Danlos Society | Web Privacy Policy



The Ehlers-Danlos Support UK  |  Your weekly update from EDS UK!  | 24 August 2018

Featuring  >>>

  • Love Amazon? Sign up to Amazon Smile and support EDS UK!
  • Meet our new Medical Advisory Panel Members
  • Cheer on our Great North runners!
  • I cycled 5,000 miles round Britain to beat my illness and found kindness I never knew existed
  • Kirsty’s Big Fun Run challenge
  • Ezra the Zebra book coming soon!

Your local EDS UK support group

Please visit the support group section of our website to find your next support group meeting.

Read all the above via this link to the EDS UK weekly newsletter  >>>

Are you someone with Ehler’s Danlos Syndrome (EDS), or Hypermobility Spectrum Disorder (HSD) related conditions and living in the UK? Visit the The Ehlers-Danlos Support UK website for information, advice and #patient support via this following link.  You will be able to opt-in for their newsletters and gain access to professionals, research, health information, and also others like yourself if you join in and register with a local support group.

A great place for EDS,… and HSD’s

Here’s the link >>>


Copyright © 2018 The Ehlers-Danlos Support UK

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


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

paper.li newsletters have also moved to their own ‘digested’ post and they update themselves.   The list includes >>>

DAILY! European Medical Journal

The Patient Registry Daily News & more on patient registries and their impact on healthcare today


The Immunology Daily

Twice Daily!   |   News from Focus on Disability 

Daily! Above The Fold in Healthcare is out!

Daily!  Brainless Blogger News

The Chronic pain Daily |  Support from Coach Amber Rose 

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

Twice Daily! Fibromyalgia ME Chronic Pain is out!  

Twice Daily! Life Chronic Pain & Autoimmune Systemic Diseases & Dementia® 

Twice Daily!  News from UK Care Guide 

Click the link above for access to these paper.li’s

Don’t forget! if you like what you read, share and opt-in for their e-newsletters!!

 About paper.li  |   paper.li/introduction.html



Neuroscience Newsletter |  28 August 2018

Enjoy our latest Neuroscience News updates from the last 24 hours. You can read the full articles by clicking on the headlines or the links embedded in the summary. 


How Cells Make Connections Could Impact Circadian Rhythm
Researchers have developed a new, data driven approach to reveal the topology of networks connected to the circadian clock.


ASMR Videos Could Be a New Digital Therapy For Depression
As ASMR videos are becoming more and more popular, researchers consider using ASMR as a therapeutic tool to treat a range of psychological disorders.


35 Genes Associated with Cannabis Use Identified
Researchers have identified 35 genes associated with cannabis use. The study reports many of these genes are also associated with personality types, risk taking behavior, alcohol and tobacco use, and some psychiatric conditions.


Genes that Regulate How Much We Dream
A new study identifies two genes which regulate how much we dream. The genes, Chrm1 and Chrm3, play a key role in regulating REM sleep and function in different ways.


Researchers Develop Drugs with Potential to Curb Smoking
Researchers have developed more than a dozen new potential drug candidates they believe have the potential to curb smoking addiction by slowing how nicotine is broken down in the body.


Neuroscience News | Neurology | Robotics| Psychology | Submit News

Neuroscience News
4747 Research Forest Drive, STE 180
The Woodlands Texas 77381



Mayo Clinic Social Media Network | 27 August 2018

Sign up and join in the conversations via the link at the end of the post!

Already a member then follow these links>>>

This Week’s Highlights

7 Tools To Find Inspiration For Your Headlines

Write Better Headlines With These 9 Winning Formulas

You can sign up for ‘Mayo Clinic Social Media Network’ by following this link >>>


Quote from About Us webpage:

“At Mayo, we believe individuals have the right and responsibility to advocate for their own health, and it’s our responsibility to help them use social networking tools to get the best information, and connect with providers as well as one another.”



© Mayo Clinic Social Media Network. All Rights Reserved.

eyeforpharma logo

#pharmanews #eyeforpharma #pharma #tech

The Big Trends Transforming Pharma | 28 August

Big trends in marketing according to Bayer, Janssen and Lilly c-suites

The industry is fast approaching a promising new future. How is it getting there?

Eyeforpharma asked some industry heavyweights what their vision of the future looks like for pharma.

Read the article here to hear from:

  • Sebastian Guth, Executive Vice President and Chief Marketing Officer, Bayer
  • Christi Shaw, Senior Vice President and President, Lilly Bio Medicines, Eli Lilly
  • Kris Sterkens, Company Groups Chairman, Europe, Middle East and Africa, Janssen
  • Julie Gerberding, EVP & Chief Patient Officer, MSD
  • Jim Robinson, President & COO, Alkermes
  • Andrin Oswald, Director of Life Sciences Partnerships, Global Health, Gates Foundation

Enjoy the read.


Lauren Robertson
Global Project Director  |  eyeforpharma



Marketing and Customer Experience USA 2018

Nov 14, 2018 – Nov 15, 2018, Philadelphia

A best in class marketing show for Pharma – not just another Pharma marketing show!


eyeforpharma Editorial Disclaimer
The views and opinions expressed in our content are those of the authors and do not necessarily reflect the official policy or position of eyeforpharma. Examples of analysis performed within this article are only examples. Assumptions made within the analysis are not reflective of the position of eyeforpharma.


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Eyeforpharma – Mission statement:
Our mission is to make pharma more open and valued
The ultimate driver for the pharmaceutical industry’s health is meeting the needs of patients, otherwise it will cease to matter. For healthcare to be as good as it could be, the strength, skills and resources of our industry need to be fully integrated into health outcomes and we need pharma experience at the decision-making table.
We believe the industry must focus on a business model combining service with product, with patients at the center.



Event registration opens today for National Drug & Alcohol Facts Week  |  National Institutes of Health (NIH) |  29 August 2018

Observance to be held January 22-27, 2019, with new resources for parents and educators.


‘NDAFW is an annual, week-long series of educational events that link teens with scientific experts to SHATTER THE MYTHS about substance use and addiction. NIDA and NIAAA are both part of the National Institutes of Health.’

Opt-in for the e-newsletter about NDAFW planning, organizations can e-mail NIDA >>>



Follow the conversation on social media and look for the hashtag #NDAFW.

@NIDAnews and @NIAAAnews

Details about a NDAFW twitter chat will be shared later this year. To see press highlights and previous articles about NDAFW, go to: 

For all information related to NDAFW, go to: 

NIH…Turning Discovery Into Health®



Please note that I have opted-in to receive all the newsletters that I post from and also please remember to read the privacy policies.

Also, due to the excessive amount of newsletters landing in my inbox, and my haphazard sleep cycle, not all will get updated daily!

If you like what you read PLEASE remember to share and opt-in


fibroflutters mental heal discussion group cover pic

For the #Professionals

Psychiatry Advisor’s Daily Updates  | Featuring:  Antipsychotics Adversely Affect Adiposity and Insulin Sensitivity in Youths |  August 29 2018

Psychiatry Advisor’s Daily Updates email features the latest NewsClinical Features, and Opinions for psychiatric health-care providers.

Featuring >>>

  • Deep Transcranial Magnetic Stimulation Combined With SSRIs Possibly Effective for Treatment-Resistant Depression
  • Cortisol Levels May Contribute to Global Cognitive Decline in Elderly Adults With Depression
  • Examining the Effect of Chronic Opioid Use on 2016 Presidential Voting Patterns
  • Higher Risk for Mental Health and Substance Use Disorders in Psychiatry Interns
  • Factors of Inclusivity Promote Workforce Wellness and Engagement
  • NYU Becomes First Medical School to Cover All Tuition
  • Amount of Physical Exercise Affects Mental Health Burden
  • Teen Smoke Exposure Tied to Increase in Related Symptoms
  • Strategy Outlined for Shooter Incident in Healthcare Facility
  • Small Practices Also at Risk for Data Breaches


Pediatric Anxiety Disorders: A Comprehensive Overview


Bipolar Disorder: Is There a Hereditary Connection?

Study suggests that family history of psychiatric illness may be related to a younger age at onset of bipolar disease. See details.


Patient Safety in Psychiatry: Improving Systems and Practices 
This program is a series of 5 Clinical Dialogues taking an immersed look into the issues of patient safety in psychiatry, focusing on aggression, medication errors, handoffs, suicide risk, and elopement. 
2.50 AMA PRA Category 1 Credit(s)TM

Read all the above via this link  >>>

Psychiatry Advisor’s Daily Updates

© 2018 Haymarket Media Inc | 275 7th Ave, 10th Floor, New York, NY 10001



Disability Rights UK is pleased to announce that we are working in conjunction with UNITE Magazine.

NEW! Disability Rights Magazine Out Now!

Disability Rights UK Training  |  UNITE Magazine

‘UNITE is your new disability rights magazine. Out every month, UNITE covers a wide range of topics from accessibility and housing to universal credit and mental health campaigns.’

From the Disability Rights UK Training newletter 8 July 2018

Click here to subscribe, a fee may be required  >>>

Visit the magazine website home page  >>>

Visit the Disability Rights website for all kinds of information, advice and also opt-in for e-news  >>>


Disability Rights UK

14 East Bay Lane
Here East, Queen Elizabeth Olympic Park
StratfordLondon E20 3BS
United Kingdom

020 7250 8181


#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 >>>


 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





FibroFlutters in Support:

#Fibromyalgia #fightfibro #Fibro2018 #fibroawareness #shoutitloud #Patients #JustGiving

Fundraising to raise £20,000 for Fibro drop-in centre  |  Rock Off Fibro ~ Fibromyalgia awareness

Quoted from Just Giving page:

“Weʼre raising £20,000 to Help fund the opening of the UKs 1st Fibromyalgia, drop in center to drive our work forward helping those with Fibro , Ptsd , Chronic pain”, Jackie Williams ~ Rock Off Fibro, Fibromyalgia Awareness

Please can you help such a worthy cause, patients are trying to help other patients?!

PLEASE help raise awareness of join us as we launch our double album. fantastic night of     

Special guest appearance by

The Rigger , Newcastle Under Lyme

please share

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

ROCK OFF FIBRO, Fibromyalgia Awareness concert. Public group

Visit Rock Off Fibro on Twitter  >>>

Rock off Fibro   @rock_off_fibro




#EpilepsyAwareness  #Epilepsy

The Turning the World Purple Foundation  |  Epilepsy | 


We are more than our diagnosis. Epilepsy is NOT who you are.

We are working to smash stigmas associated with Epilepsy through advocacy and education.


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



Connecting You to the Chronic Illness Community

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


“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



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

Why not join FibroFlutters Mental Health Group On faceBook and help us to grow a friendly place to talk about Mental Health  >>>


Something new

In the Chillout Lounge!

“Remove Negative Thoughts & Subconscious Blockages” Meditation Music for Positive Energy

By  Meditation and Healing |  7 August 2018


Why not visit Meditation and Healing to see what other tubes they have?  >>>


Every morning and evening I was posting several links to a variety of online newspapers and thought that maybe I could post from here via newsletters, our website/blog,  instead.

This is to ensure that all the news and stories go out to everyone that follows us across the social media platforms that we have profiles/accounts.

There’s a few links to my favourite online newspapers for finding a variety of health related news from other Chronic Illness Bloggers & Warriors, for up to date news about health conditions such as latest research papers or people sharing hints and tips about how they cope day-to-day.

Let us help them by showing our support by sharing the news and stories that they share.

If you publish a health related paper.li or other health news magazine/paper that isn’t listed and you would like it to be, please contact me – Carole Sian at fibroflutters@gmail.com or use the form below and let me know, always happy to help 🙂


FibroFlutters – Support Group for people with Fibromyalgia, Chronic Pain, EDS/Hypermobility, Mental health, Chronic fatigue/Me, Rare & others offering friendship, support & advice in Sunderland, NE UK and 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