#chronicillnessVOICE | Morning Edition | 11 August 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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



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!!

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Paper.Li newsletters have also moved to their own ‘digested’ post and they update themselves. 


#chronicillness #rareillness #invisibleillness #anxiety #mentalhealth #chronicpain 

A selection of posts by chronic bloggers via The Mighty 



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MedicineNet ~ Newsletter  |  Main Headline: Special: Hot Flashes  10 August 2018

What Causes Hot Flashes?
Do you think of hot flashes as sudden waves of heat coming from your head, neck, or torso with red, blotchy skin, sweating, and a rapid heartbeat?

Other headlines  >>>

  • QUIZ  |  What Are Early Lyme Disease Symptoms?
  • SLIDESHOW  |  Dangers of Sun-Damaged Skin
  • ARTICLE  |  IBS vs. IBD: What Are the Differences?
  • SLIDESHOW  |  Signs of Heat Rash
  • SLIDESHOW  |  16 Bad Joint Habits
  • SLIDESHOW  | Bacterial Infections

Read all the above via the following link  >>>

FROM OUR WEBMD SPONSORS >>>   Your Guide to Finally Quit Smoking


Latest NIHR funding opportunities |  NIHR  | 10 August 2018

Latest NIHR funding opportunities

Public Health Research Programme
18/124 researcher-led; including the following highlight notices:
London Devolution
Complex health and care needs in older people
Brain tumours

Copyright © 2018 NIHR, All rights reserved.


Chronic Pain Patient – Learning How to Become a Caregiver | By Ellen Lenox Smith|  National Pain Report  10 August 2018


‘So, I am now experiencing the tables being turned. The question is how can I help to ease his concerns and help my caregiver be more comfortable to take care of his needs, too? What can I, the person that has been taken care of by him, do to let him feel the same level of support that he has generously given to me all these years?’

From the webpage:

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

Visit the National Pain Report website and opt-in for their newsletters  >>>

Copyright 2018 National Pain Report


NIH News in Health | Bionic Movements | Loneliness | Shingles | Concussions | Palliative Care |  6 August 2018

Check out the August 2018 issue of NIH News in Health, the monthly newsletter bringing you practical health news and tips based on the latest NIH research. Download a PDF version for printing.

Child wearing robotic exoskeleton in the laboratory

Bionic Movements

Connecting Mind and Machine

New technologies are helping restore independence for those who have lost the use of a limb.

Woman on couch with dog at party

Care and Connection

Loneliness Affects All Ages

Human beings are social creatures. Connections with others can help protect your health

Health capsules

To search for more trusted health information from NIH, bookmark https://www.nih.gov/health-information. For wellness toolkits, visit www.nih.gov/wellnesstoolkits.

Please pass the word on to your colleagues about NIH News in Health. We are happy to send a limited number of print copies free of charge for display in offices, libraries or clinics. Just email us or call 301-451-8224 for more information. If you’re an editor who wishes to reprint our stories, please see https://newsinhealth.nih.gov/about-us

For all other inquiries about NIH programs and activities, please contact Ask NIH. Before writing, please view our Frequently Asked Questions page, our Health Information page, or Search our website.

This service is provided to you by the National Institutes of Health.
NIH…Turning Discovery Into Health®



Neuroscience Newsletter |  11 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. 

You’re Only as Old as You Think and Do
Researchers report feeling more in control of your life and increasing physical activity is key to better health, cognition and longevity as we age.
Surprise Finding in Neurons
Researchers discover higher infection rates in Purkinje cells with the herpesvirus HHV-6 in patients with bipolar disorder.
Elderly Dialysis Patients Have a Higher Risk of Dementia
A new study reports older adults who receive dialysis treatment for kidney disease have an increased risk of being diagnosed with dementia.
Targeting a Brain Mechanism Could Help Treat Aggression
Researchers have identified some of the key neurobiological mechanisms that help keep aggression under control. The findings could help develop targeted treatments to help those with aggressive problems associated with psychological disorders.
Skills and Learning Improved by Closed Loop Electrical Brain Stimulation During Sleep
Researchers report transcranial alternating current stimulation applied during sleep can help accelerate learning, memory and skill acquisition.
PSD as a Molecular Platform For Understanding Synapse Formation and Plasticity
A new study reports that both in solution and on supported membrane bilayers, multivalent interaction networks formed by major excitatory postsynaptic density scaffold proteins led to formation of PSD-like assemblies via phase separation.
Brain Proteins and Patterns Reveal Clues to Understanding Epilepsy
Researchers shed light on key proteins that play roles in controlling epilepsy and anxiety.
How the Sense of Smell Developed
A new study may help answer the age old questions as to whether animals’ sense of smell became so viable. The findings shed light on why some animals developed extraordinary olfactory systems.
CBD Oil Study Shows Significant Improvements in Patients with Treatment Resistant Epilepsy
A new study reveals CBD oil significantly improves seizure frequency and other symptoms in people with treatment resistant epilepsy.

Neuroscience News | Neurology | Robotics| Psychology | Submit News

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



#EDS  #EDSUK  #Toolkit

The Ehlers-Danlos Syndromes Toolkit  |  Ehlers-Danlos Support UK | Sourced via Royal College of General Practitioners

The Ehlers-Danlos Syndromes Toolkit

This toolkit has been developed in partnership between the RCGP Clinical Innovation and Research Centre and Ehlers Danlos Support UK led by Emma Reinhold and with contributions from Lisa Jamieson, Lesley Kavi, Kay Julier, Hanadi Kazkaz, Alan Hakim, Nikki Praiba, Gemma Pearce, Philip Bull and Jan Groh.

Please send any feedback or suggestions to circ@rcgp.org.uk

©2018 Royal College of General Practitioners


Government announce opt-out system for organ donation

5 August 2018     

It’s funny because one of the things I have saying, and I am fairly certain among many others, that I couldn’t understand why an Opt-in/out system wasn’t being considered as the best way to find out if people want to share their patient data with you.  In response to this I was informed about discussions happening for Organ Donation  purposes

In this case it is for the purpose of Organ Donation, which to be honest I thought already was an ‘opt-in/out’ system.  I have a card stating I’m a donor when I die, it was my choice to sign up for it, no-one elses’s.

Of course! that was before technological advances, and the progression in data analysis tools, for digitally recording information.  Having patient data logged in a system to make it easier for matching potential donors must be a great thing.  It will surely help to speed the process along and also help many more people before it becomes to late.

Besides which, I first signed up a long time ago but lost the card so if anything had happened the hospital would not have known.  I do have a new one now!  Naturally, people losing their donor cards was a huge bottleneck for the Organ Donation Foundation and the people who fight hard everyday to find matching donors.

Hopefully this new opt-in/out system will help to improve things for the Organ Donation Sector of the industry.

Read about it via this link  >>>


Sourced via British Heart Foundation & EMJ paper.li >>>




#NETCommunity #NeuroendocrineCancer #NETS 

RONNY ALLAN – LIVING WITH NEUROENDOCRINE CANCER NETwork with ronny© | RonnyAllan.NET – Community Newsletter May round up |  30 July 2018


Ronny’s Community Newsletter  >>>

Blog Home Page  >>>

Living with Neuroendocrine Cancer



#Alzheimers  #Dementia 

Alzheimer’s Reading Room Newsletter|  Can an existing Alzheimer’s drug stop Alzheimer’s disease if taken before symptoms develop?  |  Bob De Marco |  8 August 2018

Other headlines  >>>

  • 3 Ways to Redirect a Dementia Patient and Embrace Reality
  • Can Aspirin Reduce the Risk of Alzheimer’s Disease?
  • Spouses of Dementia Patients Pay a Heavy Toll
  • How to Inspire a Dementia Patient to Shower (Podcast)
  • Award Winning Knowledge Base
  • Articles

Link to the newsletter  >>>

For more news and information visit the site where you can also opt-in for e-newsletters  >>>

The Alzheimer’s Reading Room does not provide medical advice. The contents are for informational purposes only, and are not intended to substitute for professional medical advice, diagnosis or treatment. The views of the individuals that write on this website, contribute articles, or are quoted on this site are not necessarily those of the Alzheimer’s Reading Room. For specific, personalized medical advice we encourage you to contact your physician.
Unauthorized use and/or duplication of all materials and articles in the Alzheimer’s Reading Room without the express and written permission from Bob DeMarco are strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given and appropriate and specific direction to the original content is included.

Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | August 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! >>>

ARMA AUGUST Newsletter

  • 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.



eyeforpharma logo

#pharmanews #eyeforpharma #pharma #tech

Why Patient Organizations Are No Summer Fling For Pharma

By Adam Chapman |  8 August 2018

Opening paragraph

‘Breaking news: Protestors from patient organizations gather en masse outside a pharmaceutical company’s headquarters wielding placards emblazoned with the words TRANSACTIONAL and TOKENISTIC.’


‘A patient expert’s contribution may not always be considered but letting them know the reasons why is essential to maintaining a healthy and transparent relationship, adds Foote.’

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.



Morning Rounds

STAT: Morning Rounds | Sponsored by Abvvie |  9 August 2018

Facebook to roll out new restrictions on addiction treatment ads

Talking points from the news

  • Facebook to roll out new restrictions on addiction treatment ads
  • Induced labor at 39 weeks linked to lower C-section risk
  • Some Open Payments entries aren’t accurate
  • SPONSOR CONTENT BY ABBVIE | Endometriosis treatment is grounded in science, driven by commitment
  • Lab Chat: Tumors send out tiny weapons to attack T cells

Inside STAT:  

  • An immunotherapy to rival CAR-T finally nears the clinic
  • Cherries improve gut health, cherry industry says

Also – What to read around the web today

Link to the newsletter >>>

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


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©2018, All Rights Reserved.


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



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  >>>




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?!

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  >>>

Visit Rock Off Fibro on Twitter  >>>

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 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