#chronicillnessVOICE | 10 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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


THANKYOU FOR YOUR PATIENCE AS WE WORK ON IMPROVING THE WEBSITE

It is taking longer than anticipated




Including!

In the Chillout Lounge!

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 

By  Meditation and Healing |  8 September 2018

Psst!  It’s at the end!!

 



 

September is #PAM2018 #painawarenessmonth chronic pain awareness month




Celiac-Scene-Gluten-Free-News-September-2018 FB

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

For gluten-free news and information including  >>>


CELIAC EXPERT CORNER


The Celiac Scene

  • NCGS Patients Not Able to Identify When Glutened
  • Victoria & Westshore: Meet Up Group for Gluten-Free Families
  • Celiac Disease – Is There a Surge in Diagnosis Rates?
  • What Not to Say to a Celiac
  • Antibody Therapy Could Stop Celiacs’ Immunological Trigger in its Tracks
  • Introducing Gfreewiki.com
  • Osteoporosis Diagnosis Does Not Warrant Celiac Disease Screening
  • 5 Detection Strategies for Celiac Disease

CANADIAN CELIAC PODCASTS


OUR FAVOURITE GLUTEN-FREE PRODUCTS & SERVICES


GLUTEN-FREE RECIPES


GLUTEN-FREE EVENTS

  • Hornby Organic Energy Bar Tasting at Lifestyle Markets – September 15
  • Emergency Preparedness Garage Sale at TOTAL PREPARE – September 22
  • Free Emergency Preparedness Workshop at TOTAL PREPARE – September 22
  • Kelowna Celiac Support Group Meeting – September 26
  • Showcasing Schar Gluten-Free Baking at Lifestyle Markets – September 29

Visit bit.ly/GlutenFreeVancouverIsland for more gluten-free happenings!
Follow The Celiac Scene Facebook Page for daily announcements!


OUR FAVOURITE CELIAC-FRIENDLY RESTAURANTS


Read all the above via the following link  >>> 

Ellen Bayens ~ The Celiac Scene News – September 2018


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



Follow The Celiac Scene on Twitter  >>>




Header image is from the newsletter 


© 2018 Copyright – Site by Victoria’s PPC Solutions

The Celiac Scene

 



back-pain

#trappednerve  #pinchednerve  #chronicpain #carpaltunnelsyndrome

THE AWFUL PAIN OF A TRAPPED/PINCHED #NERVE… |  BARMAC5 | BackPainBlog  | 9 September 2018


A great informative post by Barbara as she discusses her own problems with ‘ulna nerve entrapment and the treatments she has received for them.  A painful and disabling condition which affects the arms so badly that it can render the use of arms and hands ‘out of order’.   Surgical treatment can be option for people if they meet the criteria.


Excerpt:

‘A pinched #nerve can occur at a number of sites in your body. A herniated disk in your lower spine, for example, may put pressure on a nerve root, causing pain that radiates down the back of your leg. Likewise, a pinched #nerve in your wrist can lead to pain and numbness in your hand and fingers (carpal tunnel syndrome).’



Read  Barbs Blog post via this link  >>>

THE AWFUL PAIN OF A TRAPPED/PINCHED #NERVE…


BACK PAIN BLOG UK…
BACK PAIN BLOG UK IS A PERSONAL JOURNEY OF A CHRONIC BACK PAIN SUFFERER. MY SITE IS FULL OF THE LATEST TREATMENTS, PRODUCT REVIEWS, THERAPIES, DRUGS, TIPS AND WEBSITES ON BACK PAIN, FIBROMYALGIA AND ARTHRITIC CONDITIONS.

 



 

#patientvoice  #chronicillness  #patientjourney  #healthblog

My Medical Musings
Medically Retired and Living a Life of Faith and Hope with a Rare Disease

The “Chronic Illness” Law of Diminishing Returns  |  Sam  |  7 September 2018


Excerpt:

‘Expectations and tangible outcomes can begin to diminish the longer you live with a particular disease. Especially when all known treatment options have been exhausted.’


Read the post via the following link  >>>

 



 

Weekly digest for Nashville Medical News Blog  |   Nashville Medical News Blog  |  9 September 2018


BUSINESS

Highlights From Second Day Of Health:Further  |  By Larry McClain  |  30 August 2018


Excerpt:

‘By using telehealth to integrate the activities of EMS, law enforcement and the Mobile Crisis Team, Charleston County has been able to divert 56 percent of 911 callers from the ED.’



Nashville Medical News Blog   >>>

 



 

Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | September 2018

Harnessing a collective focus to transform MSK services


In this issue

  • Guest Blog – Adopting the holistic approach | by Professor Anthony Woolf, Chair, ARMA

Webinar: Setting up a MSK Service

  • Webinar: Setting up a MSK Service 
  • Everything you wanted to know about setting up a Musculoskeletal Service but were afraid to ask!
  • 5 October 2018, 12.30 – 1.30

  • Webinar: Rheumatology commissioning in a community
  • Commissioning for Quality: Community-based Rheumatology Service
  • 19 October 2018, 12.30 – 1.30

MSK services survey – Please let us know what is happening locally

MSK services survey – Please let us know what is happening locally

As part of our Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target our support for improvements.


  • Members’ News and Resources

Primary Care Rheumatology Society Conference 2018
“Improving MSK Medicine & Rheumatology”

Starts: Thursday, 22 November 2018 – 09:00
Ends: Saturday, 24 November 2018 – 13:00

And  more… 


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

ARMA SEPTEMBER Newsletter


Who are ARMA? >>> About ARMA


  • 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.

 



 

Weekly digest for The Migraine Mantras  |  The Migraine Mantras  |  10 September 2018


How Blue Light can Affect People with Chronic Illness |  By Heidi (Guest Writer)  |  9 September 2018


Excerpt:

‘Blue light disrupts the sleep-wake cycle, so downloading a free program like F.lux will change the blue light on your computer screen to match your sleep cycle. You can also use it on Android phones, but you have to manually change to night time mode in the settings on iPhones.’


Read the post via the following link  >>>


 

The Best Free Apps to Combat Migraine & Chronic Pain  |  migrainemantras  | By Alexandria  |  7 September 2018


Excerpt:

‘Since you can listen to the entire self-hypnosis narration free, I advise you to listen to both Migraine Relief and Chronic Pain Relief as long as you want. These are only a few differences between the free and the paid versions of this app, and none of those differences concerns the actual content of the self-hypnosis meditation itself.’


Read the post via the following link  >>>


 

An Open Letter About The Opioid Crisis  |  migrainemantras  | By Wanda |  4 September 2018


Excerpt:

‘There is another “opioid crisis” in America today. It is the crisis of patients being turned away because doctors are judged by insurance companies and legislators for prescribing such medications. It is the crisis of the side-lined, those whose lives are ruled by pain but are unable to treat it adequately. It is the patient who has chosen to take the “lesser” medication and now finds it being stigmatized as well.’


Read the post via the following link  >>>


The Migraine Mantras  >>>



MNT weekly newsletter | 5 September 2018

Pain / Anesthetics
Common painkiller poses risk to heart health

New research suggests that a widely used painkiller raises the risk of major cardiovascular problems such as heart attack and stroke.

Swelling in rheumatoid arthritis and where it occurs

Swelling around a joint is a common symptom of rheumatoid arthritis. It often appears around the hands and feet and is caused by inflammation or a buildup of fluid in the lining of the joint. Learn how this swelling occurs, where it can appear, and how people can treat this symptom of rheumatoid arthritis.

How long do hemorrhoids last? What to know

Hemorrhoids are a common problem, particularly during pregnancy and as people age. While hemorrhoids sometimes only last for a few days and cause mild symptoms, some people experience frequent or long-lasting hemorrhoids. Here, learn more about how long hemorrhoids last. We also cover treatment and home remedies.

What causes pinkish-brown discharge?

Various factors affect the color of vaginal discharge. Pinkish-brown discharge is usually not a cause for concern, but it may sometimes occur due to a condition that requires treatment. Here, we look at the causes of pink or brown discharge, including periods, pregnancy, and infection, and discuss when to see a doctor.

What causes itchy nipples while breastfeeding?

Itchy nipples are a common complaint, especially in the initial weeks of breastfeeding. In this article, learn about the causes of itchy nipples and breasts while breastfeeding, including thrush, a bad latch, contact dermatitis, and the let-down reflex. We also cover how to get relief at home and when to see a doctor.

Rheumatoid arthritis and back pain

Rheumatoid arthritis (RA) can affect the joints in the spine, including the cervical and lumbar vertebrae. This can cause pain and stiffness in the back. In this article, we look at how people can relieve pain associated with RA in the back. We also explore the causes and symptoms of RA back pain.

What are the signs of prostate infection?

When an infection in the prostate results in inflammation, this is called bacterial prostatitis. Symptoms include pain in the lower abdomen and difficulty urinating. The infection may be acute (short-term) or chronic (long-term), and a treatment plan may include medication, or surgery. Learn more here.

How to manage morning stiffness with rheumatoid arthritis

A high percentage of people with rheumatoid arthritis (RA) experience stiff joints in the morning. People can relieve this morning stiffness by planning ahead and developing a morning routine to help deal with their symptoms. Learn about ways to manage and prevent morning stiffness here.


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Image

The Ehlers-Danlos Society|  CONNECT: 2017 Criteria Survey, EDS + psychology webinar tomorrow, and more!  | 4 September 2018

Including  >>>

2017 International Criteria Patient and Carer Survey


Online Local Anesthetic Responsiveness Survey


Professor Rodney Grahame: The first 50 years


Vanessa Wallace, Para Athlete with Ehlers-Danlos syndrome, wins European championship gold in shot put


Not Invisible

A #myEDS story by Erica O.

“My EDS story is ongoing and complex, as all of our stories are. I am a nurse, a daughter, a girlfriend, a niece, a friend, I am an Ehlers Danlos fighter. I am not invisible. WE are not invisible!”



This was on 5 September!  Webinar: The Emotional Dimensions of EDS/HSD

Dr. Antonio Bulbena will host a webinar Wednesday, September 5th at 12:30 PM Eastern: “The value of identifying emotional dimensions in EDS/HSD”

You MUST sign up to attend this webinar. A recording will be available on our website and YouTube page after the webinar is concluded.

Follow the instructions given by The Ehlers-Danlos Society



The Ehlers-Danlos Society
P.O. Box 87463
Montgomery Village, MD 20886

 



#PAM


Airing Pain

Informing the pain community


Programme 106:

Pain Education for Doctors, Chronic Pain and Resilience
What can be done to implement better pain educaiton for doctors, patients and parents, and trusting your pharmacist when in doubt.


From e-mail: Production Team, Pain Concern


This edition is incredibly informative, focusing on the gaps in pain education that are present in the UK, which is why we thought your organisation would be interested.

The programme will cover the Essential Pain Management Course, research into patients’ expectations of pain management, and parent appraisals of injustice when their child has chronic pain.

Adam

Broadcast Assistant

Pain Concern



PLEASE share and help us to join in raising awareness for chronic pain through the use of education like this latest ‘Airing Pain Podcast’ which is aimed at medical professionals and everyone #notjustpatients

Many thanks Carole Sian (CEO) Co-Founder FibroFlutters 


106: Pain Education for Doctors, Patients, and Parents


Registered Office: Unit 1-3, 62-66 Newcraighall Road, Edinburgh Eh15 3HS
Company Limited by Guarantee, Registered In Scotland No: 546994
Scottish Charity No: SC 023559
Tel: 0131 669 5951
www.painconcern.org.uk
Helpline: 0300 123 0789 E-Help: help@painconcern.org.uk
Find us: Twitter  Facebook  Forum

 



 


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


 



eyeforpharma logo

#pharmanews #eyeforpharma #pharma #tech


EVENT

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!


Article  >>>

Patient Services Bring Pharma into a New Era – Are You Ready?


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

social.eyeforpharma.com/about-us

Get the latest industry insights in your inbox:

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www.twitter.com/eyeforpharma
Like eyeforpharma on Facebook:
www.facebook.com/eyeforpharma
Subscribe to eyeforpharma youtube channel:
www.youtube.com/user/eyeforpharma

 


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

 

 



#NeuroendocrineCancer  #NETS

RonnyAllan.NET – Community Newsletter Covering August 2018

ronnyallan.net/2018/08/31/ronnyallan-net-community-newsletter-covering-august-2018/

International Awareness of Neuroendocrine Cancer and associated issues. Supporting and helping NET Patients

 



 

#Dermatology  #Venereology  #EADV

European Medical Journal  |  2 September 2018

Preview of the 27th European Academy of Dermatology and Venereology (EADV) Congress – European Medical Group  |  29 AUGUST 2018 | DERMATOLOGY

www.europeanmedical-group.com – Written by James Coker | Reporter, European Medical Journal | @EMJJamesCoker From 12th–16th September 2018,


Why not check out today’s edition of ‘European Medical Journal, and many other health related newspapers via our Paper.li post where the issues all self-update, via this link  >>>

My favourite Health related Paper.Li newsletters| Self-Updating | fibrofly73


Website by Vercossa

 



paper.li’s

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

paper.li newsletters have also My favourite health related paper.lis and they update themselves.   The list includes >>>

DAILY! European Medical Journal

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

PHARMAGEEK NEWS, le Journal 

The Immunology Daily

Twice Daily!   |   News from Focus on Disability 

Daily! Above The Fold in Healthcare is out!

Daily!  Brainless Blogger News

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


 



Morning Rounds

STAT: Morning Rounds | Preventing drug shortages, Hugin’s Senate race, & asthmatic airways |  6 September 2018

Sponsored by  

STAT: Morning Rounds  6 September 2018

Headlining >>> Preventing drug shortages, Hugin’s Senate race, & asthmatic airways

  • An update on the quarantined plane at JFK Airport
  • NIH gives a boost to historically underfunded states
  • How can drug shortages be predicted — and prevented?

SPONSOR CONTENT BY ALLERGAN

  • Open science is a proven boost for pharma

 

Inside STAT:

  • Amid anger over drug prices, a former pharma CEO makes a run for the Senate

  • Scientists peek at the airways of asthma patients
  • Kavanaugh weighs in on abortion law

  • 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  >>>

www.statnews.com/signup/

1 Exchange Pl, Suite 201, Boston, MA 02109 
©2018, All Rights Reserved.


Please remember to opt-in and sign up for the STAT newsletters if you like what you read!

 



#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 LOGO ON WHITE PHOTOTASTIC

 FibroFlutters continuously

Advocating for a Multi-Disciplinary approach to all aspects of medical healthcare. With a model approach using all the ‘stakeholders’ I’ve designed a patient’s perspective of what patient-centred care, patient-included, patient-involved, patient-centric should look like and involve, that’s everyone by the way! 

You all need to pitch in!!

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

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

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



Awareness Campaigns

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

 



 

#Awareness CAMPAIGN #EDS #EDSUK #HSD #EhlersDanlosSyndrome


Wear Jeans, Change Lives on September 21st 

Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.

The Ehlers-Danlos Support UK  Campaign Newsletter ~ Are you ready for Jeans for Genes Day? 


Jeans for Genes Day is the annual fundraising campaign for Genetic Disorders UK, the national charity that supports individuals and families affected by a genetic disorder.


Read more via the newsletter here  >>>


Subscribe to ‘Fragile Links’ a regular members magazine >>>


Join, become a member and find a support group near you  >>>

EDS UK Membership Choices

  • Free – Membership for life
  • plus Fragile Links (digital) £5.00 – Membership expires after 1 year
  • plus Fragile Links (UK delivery) £8.00 – Membership expires after 1 year
  • plus Fragile Links (Eur & Ireland) £13.00 – Membership expires after 1 year
  • plus Fragile Links (rest of World) £18.00 – Membership expires after 1 year

You can join via this 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

 



 

 

 





         

 FIBROfLUTTERS LOGO ON WHITE PHOTOTASTICFMAUK SUPPORT GROUP LOGO  WorkingWith-200_100[1]


FibroFlutters in Support:

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

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


Quoted from Just Giving page:

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

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


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

Special guest appearance by

The Rigger , Newcastle Under Lyme

please share


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

ROCK OFF FIBRO, Fibromyalgia Awareness concert. Public group

Visit Rock Off Fibro on Twitter  >>>

Rock off Fibro   @rock_off_fibro

twitter.com/rock_off_fibro

 



 

#EpilepsyAwareness  #Epilepsy

The Turning the World Purple Foundation  |  Epilepsy | 


MOTTO:

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

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

www.turningtheworldpurple.org/

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

 



 

chronicillnessbloggers.com
Connecting You to the Chronic Illness Community

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

 



“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



 

 #notjustpatients

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

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

https://www.facebook.com/groups/FFHQMentalHealth/



Something new

In the Chillout Lounge!

“Increase Positive Energy Vibration” Deep Meditation Music, Clear Negative Energy, Healing Music 

By  Meditation and Healing |  8 September 2018

 

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

 



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

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

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

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

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



FIBROfLUTTERS LOGO ON WHITE PHOTOTASTIC

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

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



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