#ChronicIllnessVOICE Evening Edition: ~ a health newsletter for everyone! | 21 May 2018

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

Hope you like our newletter’s new title & mini-revamp

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Daily! Above The Fold in Healthcare is out!

 



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

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.

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

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.

 



Twice daily!  Fibromyalgia ME Chronic Pain

Fibromyalgia ME Chronic Pain is out!  How it’s Costing You in Happiness, Financially and in Your Relationships!

“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” – paper.li > fibromyalgia ME /publisher

 



Twice daily!  Focus on Disability Newsletter

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

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

 



Daily!  Brainless Blogger News

Fibromyalgia and Migraine related news selected by Nikki Albert a health blogger at Brainless Blogger brainlessblogger.blogspot.co.uk/  blogging regularly about Fibromyalgia and Chronic Migraines. I freelance write as well and have published in e-zines, fibromyalgia magazines, been a guest blogger on a few sites and been published in a collection.

 



Daily!  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.

 



Ronny Allan’s Latest Daily Newsletter via Nuzzel

Neuroendocrine Cancer Patient Voice and International Advocate. WEGO Health Patient Leader, Cure Today Contributor, Cancer Campaigner, Featured Blogger (@netcancerblog). Veteran.

 



NEW POLL | When considering clinical trials, where do you think as a patient you should be involved?  |  FibroFlutters | March.. ongoing!

NEW POLL | When considering clinical trials, where do you think as a patient you should be involved?



Plus a few extras: Not in chronological order!

Change over!   432 Hz MIRACLE MUSIC | Raise Positive Energy | Deeply Relaxing & Healing Vibrations of 432Hz Music | 5 February 2018



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Im-patient UPDATE  >>>  By POPULAR DEMAND

We’re now going GLOBAL

Im-patient is expanding into North America, with the eyeforpharma Patient Summit USA in Philadelphia on October 23-24.

Thankyou to everyone who has already participated in the ‘Impatient’ survey, your ideas and thoughts have already been collated and are being discussed, by the Steering Group, already, for the ‘Impatient’-London event in October.

If you’re from North America

and have an idea, or suggestion, that you would like to be put forward for consideration towards the Conference agenda or Conference Design, then we would love to hear from you.  Maybe you’d like to get involved!

You can let us know by filling out the survey via the following link  🙂

Please tell us your ideas for the FIRST EVER ‘Im-patient’-Philadelphia Conference

Excerpt:

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 for pharma execs.

THANKYOU IN ADVANCE FOR READING AND PARTICIPATING

 

The Im-Patient Summit - Logo

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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!!

 



#EDSawareness #EDSMay2018 #Hypermobility #Dislocations #ChronicPain #ConnectiveTissueDisorder  #MayoClinic #SoMeNetwork

Redefining My Life’s Purpose…in a Recliner – Experts by Experience |Mayo Clinic Social Media Network | Shani Weber  | 18 May 2018

A NEW social media network for people with #chronicillnesses has been launched by Mayo Clinic.  This is a link to one of the posts that you can read there.

Author’s comment:

‘Ever since I was a young girl I knew I wanted to be an Early Childhood Special Education teacher.’

Read more via the link below  >>>

The Ehler’s Danlos Society on Twitter  >>>

You can sign-up for the Mayo Clinic Social Media Network quite easily via their website  >>>

 



#migraineprevention

FDA Approves Aimovig™ (erenumab-aooe), A Novel Treatment Developed Specifically For Migraine Prevention  |  AMGEN  | 

Opening lines:

‘Migraine is a Severe Neurologic Disease That Profoundly Impacts Millions of Patients in the United States
Aimovig is the First and Only FDA-Approved Treatment to Block the Calcitonin Gene-Related Peptide Receptor (CGRP-R), Which Plays an Important Role in Migraine’

 



#Migraines  #newdrug  #FDA

New Drug for Migraines Approved by FDA  |  by staff   in Migraines  National Pain Report  |  19 May 2018

Sign up for National Pain Report news and blog via this link  >>>

 



#CHAMP  #Headache  #Migraine  #Patients

CHAMP Statement on CGRP Inhibitor FDA Approval  |  Coalition For Headache And Migraine Patients  |  19 May 2018

CHAMP homepage  >>>

 



Latest!  #alzheimers  #dementia  #care  

Alzheimer’s Reading Room Newsletter |  Bob De Marco| Headliner:  Dementia Care, Do You Need to Change? |  17 May 2018

Also including:

  • Connecting with a Person Living with Dementia
  • Communicating in Alzheimer’s World
  • Is Alzheimer’s World an Irrational Place?

and much more…

Visit their Home Page  to see what else you can read and also sign-up for their newsletters  > >>



 

#ACRcriteris  #SLE #rheum  #childhoodonset #systemiclupueerythematosis

ACR Provisional Criteria: Global Flares in Childhood-Onset SLE  | posted by Sheila Jacobs | Rheumatology Advisor  |  15 May 2018

Reference  from the article  >>>

Brunner HI, Holland M, Beresford MW, et al; Canadian early Arthritis Cohort Investigators.American College of Rheumatology provisional criteria for global flares in childhood-onset systemic lupus erythematosus [published online April 25, 2018].  Arthritis Care Res (Hoboken). doi:10.1002/acr.23557

 



 

A chance to share your #PatientVoice for #ME

What’s Up TV Wants Your Voice for ME | Let’s Do It for ME | ldifme | 18 May 2018

Message from Invest in ME Research

To summarise:
– the experience of anyone who lives with M.E.
– under 20 seconds
– they would need them by Tuesday 29th May
– email to Robyn@whatsuptv.co.uk

About Let’s Do It for ME >>>

Let’s Do it for #ME homepage  >>>

 



#diagnostictests  #treatmentoutcomes  #chronicillness  #invisibleillness

PRESS RELEASE  ~ First-ever WHO list of essential diagnostic tests to improve diagnosis and treatment outcomes | News Release Geneva  | 15 May 2018  

Quote ~ Dr Tedros Adhanom Ghebreyesus, WHO Director-General:

“An accurate diagnosis is the first step to getting effective treatment,” says Dr Tedros Adhanom Ghebreyesus, WHO Director-General. “No one should suffer or die because of a lack of diagnostic services, or because the right tests were not available.” Taken from the article

Read more via this link  >>>

The Essential Diagnostics List 

Excerpt from ~ First-ever WHO list of essential diagnostic tests to improve diagnosis and treatment outcomes:

‘The Essential Diagnostics List was developed following an extensive consultation within WHO and externally. The draft list was then considered for review by WHO’s Strategic Advisory Group of Experts on In-Vitro Diagnostics – a group of 19 experts with global representation.’

Medical devices |  Selection, access and use of in vitro diagnostics  >>>

Register with WHO via their website and recieve their newsletters  >>>

 



Not surprising newsHopefully it will change!!

Many Doctors, Even Specialists, Don’t Adhere to Fibromyalgia Diagnostic Criteria |  Lorraine L. Janeczko  | MEDSCAPE | 2 January 2018

 NEW YORK (Reuters Health) – Generalist doctors, and even many specialists, have relatively poor knowledge of the American College of Rheumatology 1990 and 2010 fibromyalgia diagnostic criteria, according to results of a survey conducted in Canada.

Read more via this link  >>>

Visit the Medscape website for more medical healthcare related news stories and articles, sign up for newsletters  >>>

 



#MentalHealth #MentalHealthAwarenessWeek #motherhood #stress #self-stigma #stigma

Jess’s story: the stresses involved in being a young mum | Mental Health Foundation 

Excerpt:

‘Stigma is well-known as a significant stressor. Individuals facing stigma are more likely to be isolated and to lack social support. Plus, there’s the issue of ‘self-stigma’, in which individuals hold onto the same beliefs as the people stigmatising them – all of which raises stress levels.’

The Mental Health Foundation website is a great source of information with a selection of publications.  You can read more stories and even sign-up to recieve their newsletter via this link  >>> 

 



 

#HITsm Chat Topic

Practical Applications of EMR Optimization Through Clinical Decision Support – #HITsm Chat Topic| John Lynn  | EMR and HIPAA | 15 May 2018

We’re excited to share the topic and questions for this week’s #HITsm chat happening Friday, 5/18 at Noon ET (9 AM PT). This week’s chat will be hosted by Justin Campbell (@tjustincampbell) from @GalenHealthcare on the topic of “Practical Applications of EMR Optimization Through Clinical Decision Support”

About the author  >>>

Visit the EMR and HIPAA website to sign-up for their newsletter >>>

 



 

#ArthritisAwarenessMonth #May2018Arthritis  #arthritis

Arthritis Action eNews |  May 2018

Headlines >>>

  • Stress: are we coping?
    • Mental Health Awareness Week
  • New ventures: Blackpool
    • Expanding our network
  • Fundraising made easy
    • Amazon Smile

Plus more…

Visit the Arthritis Action website for more information, advice and sign-up for their newsletter  >>>

 



 

#ArthritisAwarenessMonth #May2018Arthritis  #arthritis

May is Arthritis Awareness Month! | The Arthritis Foundation – Arthritis Today |  15  May 2018 

Headlines >>>

  • Small Acts Can Make a Difference
  • Build Strong Relationships
  • Get Emotional
  • Be Your Own Best Advocate
  • A Drug-Free Zone

May Is Arthritis Awareness Month

Let’s Get a Grip on Arthritis

Visit The Arthritis Foundation website for more posts and newsletters >>>

 



 

NHS England online GP appointments survey  |  A Prescription for M.E.
 | EMILY BEARDALL | 16 May 2018

INSIGHTS FROM THE INTERSECTION OF PATIENT & PHARMACIST 

About A Prescription for M.E. >>>

 



 

The following is a sponsored post

#chronicpain #painrelief #noninvasive #technology #science #alternative #musculosketal

invisiblyme.com | WELLWRAP – EXCITING NON-INVASIVE, SAFE, OPIOID ALTERNATIVE TECHNOLOGY | 14 May 2018

Quoted from WELLWRAP – EXCITING NON-INVASIVE, SAFE, OPIOID ALTERNATIVE TECHNOLOGY

‘This is a new product that will be undergoing crowd funding shortly to kick things off and the product itself is due to be released soon.’

Visit the Invisibly Me blogsite for more posts and sign-up for the newsletter  >>>

 



 

#endometriosis explained for #men #husbands

Straight, No Chaser: Endometriosis  |  JeffreySterling MD  |  18 May 2018

Excerpt:

‘You’re more likely to develop endometriosis if someone in your family (e.g., mother or sister) has it, if you started your periods at a young age, if you’ve never had children, if your periods are irregular (i.e., frequent or last more than seven days at a time) of if you have a closed hymen (vaginal opening).’

Read more via this link  >>>

 



 

#ulcerativecolitis #autoimmunity

drbonnie360.com – Your Autoimmunity Connection |  Spotlight on Ulcerative Colitis | 10 May 2018

Excerpt:

‘What is ulcerative colitis?

This month, we shine our spotlight on ulcerative colitis, an inflammatory bowel disease that is a manifestation of dysregulated immunity. The two most common inflammatory bowel diseases are Crohn’s disease and ulcerative colitis — of the 1.6 million Americans who have an inflammatory bowel disease, around 900,000 have ulcerative colitis.’

Read more via this link  >>>

Visit the blogsite for newsletter sign-up, and more posts to read >>>

 



 

Latest!

MSWorld, News, Events & More!  |   14 May 2018

Keeping you up-to-date on all things MS & MSWorld

MSWORLD EXPRESS NEWS

The Magic of Helping Others Started Here, Happens Here, and Will Continue Here!



Excellent newsletter!

Girls With Guts  (GWG)| May 2018 Newsletter | Get in the spirit! |  2 May 2018

Visit the site to find out more about GWG and the work they do >>> 

 



#backpain #chronicpain #muscles #rhomboidmuscles

Debilitating Diseases newsletter | Subject: Everything You Need To Know About Your Rhomboid Muscles And Upper Back Pain | 9 May 2018

Home Page >>>

 



#RareRevolution #raredisease #rarebabies 

Spring has sprung and our RARE Babies issue is here! | Rare Revolution Magazine | Spring 2018

Quoted from e-news mail:

‘This issue is themed around the joy that RARE BABIES bring to our lives and the challenges we face raising and battling for them, along with the bitter sweet moments of a battle lost.’

Visit the magazine website via this link and sign up for the quarterly FREE digital magazine and also read back issues >>>

 



#chronicpain  #chronicillness  #alternativetherapy #complementary  #CuppingTherapy  #health  #Spoonie 

Cupping Therapy for Chronic Pain…  |  BARMAC5  |  BACK PAIN BLOG UK…  |  11 May 2018

About ‘BackPainBlog’, Quoted from the site:

‘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.’


Opening paragraph:

‘Cupping therapy is given by using glass cups to create localised partial vacuums. It’s an ancient Chinese therapy, found in records dating back 3500 years, and involves using heat inside glass or bamboo cups. This draws up the underlying tissues and causes the blood to form in the area and help the healing process there.’

Follow the link below to read more  >>>

Why not visit Barmac5’s blog on WordPress for more chronic pain and fibromyalgia related posts  >>> 

 



#recipes #vegetablelasagne #dailynosh #eatingwell

Spring Vegetable Lasagna with Fresh Spinach Pasta | Today’s Nosh | EatingWell Daily Nosh | 11 May 2018 

Visit the magazine site for more recipes and sign up their newsletters >>>



 

#AI #socialresponsibility #robotics #bigdata #technologies #policymakers

Artificial intelligence needs to be socially responsible says new policy report  | University of Manchester | 10 May 2018

Excerpt from:

Professor Anna Scaife, Co-Director of the University’s Policy@Manchester team, explains: “Although the challenges that companies and policymakers are facing with respect to AI and robotic systems are similar in many ways, these are two entirely separate technologies – something which is often misunderstood, not just by the general public, but policymakers and employers too. This is something that has to be addressed.”

Read more at  >>>



#Fibro2018  #Fibromyalgia #chronicillness

The Fibro Warriors | I have fibromyalgia and no one believes me, not even my doctor | Servanne Edlund | 8 May 2018

Opening lines:

How do I talk to my doctor about fibromyalgia?

This is, unfortunately, a very common question among Fibro Warriors. Very often, an individual will suffer from chronic pain, joint dysfunction, Fibro Fog and sometimes added issues that are commonly associated with fibromyalgia.

About the author  >>>

Visit their website and sign-up for their newsletters  >>>



MAGAZINE  #fibro  #ME  #CFS 

Flare Magazine | The ultimate guide to Fibromyalgia, M.E & Chronic Fatigue  |  May 2018


Happy Birthday to Flare Magazine from all at FibroFlutters


Fiesta_0.preview fiesta monkey

Read the magazine via this link >>> 

Why not visit Flare magazine website and sign up for the magazine >>>



 

#Recipes #FishRecipes

Brain-Boosting, Healthy Fish Recipes  | Eating Well  |  2 May 2018

Today’s Nosh

Take care of your heart and brain, all while satisfying your stomach. These fish recipes are super delicious and the key to a healthier you.

Here’s a few to tantalise you >>>

  • Salmon & Asparagus Farro Bowl
  • Hanoi-Style Tuna Patty Salad
  • Stuffed Fresh Sardines
  • Mediterranean Tuna-Spinach Salad

Sign up for the newsletter or subscribe for the magazine >>>



ME Awareness!

Sign the Scottish Petition for ME – anyone can sign  |  #MEAction  |  1 May 2018


Why we’re Targeting the NIH for #MillionsMissing  |  #MEAction  |   30 April 2018

Excerpt:

‘The disease affects a high proportion of Americans – estimates range from 1 to 2.5 million people; the disease is highly debilitating, leaving 75 percent unable to work and 25-29 percent housebound or bed-bound; and the disease takes an annual $17 to $24 billion toll on the economy.


Visit the website for more #MEAction news and sign up for newsletters >>>



#MHAM #MigraineAwareness #HeadacheAwareness 

June is National Migraine & Headache Awareness Month (MHAM)  

2018 Theme & Hashtags | Logos | Recognitions Days | Light Up the Landmarks | MHAM Proclamations | History

Click this link to find out all about the campaign and how to get involved  >>>

MHAM Proclamations: Advocate to bring government official’s attention to migraine, headache and cluster diseases.

Need your help NOW for June 2018 launch

June is National Migraine & Headache Awareness Month (#MHAM). This year, U.S. Pain Foundation & CHAMP (Coalition For Headache And Migraine Patients) want to bring public attention to this disabling and often stigmatized disease.

CHAMP Home page >>>  headachemigraine.org/


 Research & Clinical Trial matching

Headache and Migraine Clinical Trials  |   Research & Clinical Trials > Headache and Migraine Clinical Trials  | National Headache Foundation

Match to clinical trials in 60 seconds

Know your options
Access the latest treatments
Receive world class care

Click the link below to check it out and subscribe to their newsletter  >>>

‘We are happy to announce that we’ve launched an online clinical trial matching tool in partnership with Antidote, a digital health company dedicated to connecting patients with medical research. This new tool makes finding and taking part in headache research easier than it’s ever been.’ National Headache Foundation

About the National Headache Foundation  >>>



 

Heart News!

Heart Matters |  British Heart Foundation newsletter  |  22 April 2018

Headliners:

  • How tiny tech could help treat heart failure
  • Could just one drink a day increase your heart risk?
  • 7 easy ways to add fibre to your diet

Link to newsletter >>>

Discover the BHF online community, find lot’s of healthy heart information and sign up for their Newsletters >>>



Voices required!  Nursing associate consultation |  The Nursing and Midwifery Council  |  9th April to 2 July

We want to find out what you think about our proposals for how we’ll regulate the new nursing associate role.

This consultation will run from 9 April 2018 to 2 July 2018. We welcome responses from anyone interested, including organisations and individuals.

Visit the link below >>> 

The Nursing and Midwifery Council  >>>

“The Nursing and Midwifery Council is the professional regulatory body for nurses and midwives in the UK. Our role is to protect patients and the public through efficient and effective regulation.”



Download the FREE Gastroenterology Infographic: Medisafe Insights Pharma Should Know  |  Medisafe  |  via BioPharma Dive Marketing |  11 April 2018

Exerpt:

‘In this infographic we answer:

• Why gastrointestinal patients say they miss doses
• How GI drug adherence rates vary by day and time
• What are the top GI companies by highest adherence
• Adherence rates by type of GI treatment
• And, what are the GI meds with the highest adherence rates’

Who are Medisafe? >>>

Visit Biopharma Dive and subscribe to their BioPharma Dive: Marketing newsletters  >>>



 

Change-over NEW PODCAST

Airing Pain 102: Chronic Pain and Resilience, and the “21 Days of Pain” |  Pain Concern  |  1 May 2018

 

What can be done for athletes at the highest level in the context of chronic pain, and how one man with a spinal injury found himself “in the zone” through cycling.

This edition is funded by a grant from the Stafford Trust.

Airing Pain channel on Audioboom >>>

Pain Concern website >>>



Newsletters from News-medical | Life Sciences >>>


News Medical | Arthritis Newsletter | 3 April 2018

 


News Medical |Allergies Newsletter | 17 April 2018 

 


Latest!  News Medical |Dermatology Newsletter | 3 May 2018


Latest! Newsletters from News Medical |Genetics | 17 May 2018  

Headliner:   Discovery of 100 new genes may aid research into pigmentation diseases

 


Latest!  News Medical |Neurology / Neuroscience Newsletter | 24 April 2018


Latest! |News Medical |Pharmacy / Pharmacology Newsletter | Headliner:  People who use medical marijuana have higher rates of prescription drug use, study finds |  27 April 2018

 


News Medical |Psychiatry Newsletter |  12 April 2018  

 


 

Latest!  News Medical  |  Rare Diseases  |  18 April 2018 

 


Latest!  |  News Medical |Rheumatology Newsletter |  Headliner:  Environmental pollutants found to worsen rheumatoid arthritis  |  27 April 2018  

 





Meditation Change over!   |  432 Hz MIRACLE MUSIC | Raise Positive Energy | Deeply Relaxing & Healing Vibrations of 432Hz Music | 5 February 2018


If you enjoy this then please visit >>>

Via:  www.youtube.com



 

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.

Also like to share other posts by fellow bloggers and organisations too

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 and let me know, always happy to help 🙂


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

😀


Many thanks SQUARE POSTER Communit

 


PLEASE NOTE:
  • That here at fibroflutters.com we are not medical professionals just fellow chronic illness warriors sharing information.
  • Any information read or shared on, to or from this blog site should not override any advice given to you by your own Doctors.
  • FibroFlutters is not a selling site but we will point you in the direction to subscribe to newsletters/magazines and some offer free, some don’t! 
  • The opinions expressed on this blog represent the author’s own views and not necessarily those of FibroFlutters, fibrofly73 or any other author on this website. We encourage you to share your own views in the comments section.
  • Our sharing of these articles and posts does not necessarily mean endorsement of them, and we recommend that you check for validated sources and peer reviews.  It also does not mean that we are affiliated with anyone unless it is clearly stated.
PLEASE:
  • Do not take any work, articles or pages to be your own, including those from third partie, or any external partie links, and always accredit the appropriate authors accordingly.
  • Always speak to your GP first before stopping, changing or trying new medications or treatments, FibroFlutters will not claim responsibility for any loss or damage from third parties/third partie links, or any external parties..
  • Always be aware of Internet security and note that we cannot be held responsible for external websites.
  • Remember that buying products such as ‘cure-claiming’ remedies on-line can be a risky business and again FibroFlutters will not claim responsiblity for any loss or damage from third parties/third partie links or any external parties.

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

 

Thankyou HEADER PAINT RESIZED