#chronicillnessVOICE | Morning Edition | 12 July 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients

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

Including!

In the Chillout Lounge!

852 Hz ❯ AWAKEN INTUITION || Remove Fear, Self Doubt & Subconscious Fears || 852Hz | Meditative Mind 4 July 2018

Psst!  It’s at the end!!


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



 

My Disability Matters News & Opinion Digest has moved to it’s own space and will still be updated regularly.  Why not pop along and join the MDM Club / Community Platform and meet Dale Reardon, it’s founder, while your there.

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



#migraines  #vertigo #specialists #patientvoice #neurology

Vertigo, My Newest Companion  |  Kyky Knight  |  Migraine.com  6 July 2018

Vertigo, My Newest Companion

Living In “A Quiet Place” |  Holly Baddour  |  Migraine.com  |  5 July 2018

Living In “A Quiet Place”

Why I Left My Headache Specialist |   Elizabeth Roberts-Zibbel  |  Migraine.com  |  3 July 2018

Why I Left My Headache Specialist


For more blog posts visit the website where you can also opt-in for newsletters >>>

migraine.com

Talk about it

Visit the Migraine.com forums.
LEARN MORE


©2010-2018 Health Union. All rights reserved. This information is not designed to replace a physician’s independent judgment about the appropriateness or risks of a procedure for a given patient. Always consult your doctor about your medical conditions. Migraine.com does not provide medical advice, diagnosis or treatment. Use of the site is conditional upon your acceptance of our terms of use.

 



#Raredisease

#skin #pedriatricskin  #pedriatric  #childshealth #StevensJojnsonSyndrome #SJS 

Rare pediatric skin conditions often get expensive, inconsistent care |  University of Illinois |  9 July 2018

Opening lines:

Researchers from the University of Illinois at Chicago are the first to conduct a large-scale analysis of treatments and outcomes for children with Stevens-Johnson syndrome (SJS) and toxic epidermal necrolysis (TEN), rare skin conditions caused by medications and infections.

Read more via this link  >>>

Rare pediatric skin conditions often get expensive, inconsistent care

Sourced via ‘Today at University of Illinois at Chicago’  >>>

today.uic.edu

 



#Patientcare #Patientnews #NHS 

Patient Newsletter  |  Subject:  The best foods for fighting skin problems |  11 July 2018


Main Headline: The best foods for fighting skin problems

Other Headlines >>>

  • Does stress make skin problems worse?
  • Join the Patient.info Dermatology Forum
  • When to worry about a mole
  • The reality of living with rosacea
  • When adult acne affects your mental health
  • What it’s like to have skin cancer in your 20s
  • Grilled salmon with chilli-infused edamame

Join our mental health forum >>>


Read more articles / posts from the newsletter by following this link  >>>

Visit the Home Page and register for patient access as well as newsletters >>>

patient.info/


Patient work in partnership with the NHS
© Patient Platform Limited. Registered in England and Wales.
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trade mark.



 

STAT: Morning Rounds | 11 July 2018

Carole’s pick  >>>

You can’t tell a book by its cover — or a disease by Drake’s race |  JENNIFER W. TSAI |  11 July 2018

 

Inside STAT: You can’t tell a disease by a patient’s race


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.

 



#professionals  #patients  #research #BritishPsychologicalSociety  #BPS 

#psychology  #outofbodyexperience  #vertigo  #dizziness  #spinning #neurology

Researchers have identified a group of patients who are especially prone to out-of-body experiences | Emma Young  |  WORDPRESS blog: Weekly digest for Research Digest |  9 July 2018, Published 6 July 2018

Interesting read for anyone that thinks they have experienced an Out of Body experience (OBE). 

Read the article via this link  >>>

Visit the British Psychological Society Blogsite for more articles and research related to Pscychology in their weekly digest by following this link  >>>

You can also opt-in for their their weekly e-mail!

BPS Research Digest About Us  >>>

Excerpt:

Our team  editor Christian Jarrett and writers Alex Fradera and Emma Young  (see bios below) – all have qualifications in psychology and they read thoroughly all the peer-reviewed and pre-print research they report on. 

>> Bios are on the BPS ‘About Us’ page.

Read more via this link  >>>

You can get BPS reports straight to your smartphone or tablet by dowloading their App  >>>

Visit The British Psychological Society website via this link  >>>

www.bps.org.uk/


The British Psychological Society is a charity registered in England and Wales (SC039452), and Scotland (229642).
Copyright © 2018 The British Psychological Society, All rights reserved.

 



Latest!

#stressresources #stress #mindfulness #meditation

Summer 2018 Newsletter from Stress Resources |  Pamela Ressler  |  July 2018

A great newsletter with a mix of things to help you live with less stress


Quoted from the home page:

‘Stress Resources specializes in providing individuals and organizations with strategic, sustainable tools to build resilience and mindfulness. Our goal is to empower your creativity, productivity and leadership’  


For more articles and information visit the Stress Resources website where you can also sign up for their newsletter  >>>



 

#Migraine #TriggerFoods

3 Ways I’ve Eliminated Migraine Trigger Foods  |  JENNIFER  | WORDPRESS blog:   Weekly digest for The Migraine Mantras  |  9 July 2018, Published 6 July 2018

Opening line:

‘Having Chronic Hemiplegic Migraine has taken a lot of things from me, but none has been more frustrating than some of the food I can no longer eat.’


 

Why Getting a Medical ID Bracelet for My Hemiplegic Migraines Depressed Me  | Alexandria | WORDPRESS blog:   Weekly digest for The Migraine Mantras  |  9 July 2018, Published 6 July 2018

Opuening lines:

You’re getting a migraine, aren’t you?” said my physician last year during one of my regular visits. “If you were pulled over, a policeman would think you were drunk or on drugs. If you were taken to a hospital, they would think you were having a stroke. Time for you to get a medical ID bracelet.”

Why Getting a Medical ID Bracelet for My Hemiplegic Migraines Depressed Me


For more blog posts at Migraine Mantras visit this link, where you can also opt-in for their weekly e-mail  >>>

 



#IMPACT #PPI #rdsummit2018 @UHCW_RandD @nhsuhcw

What might IMPACT look like? | Derek Stewart  | Make A Difference | 08 July 2018

‘What might IMPACT look likefor Public Involvement?’ is the question that Derek posed at a workshop at Coventry & Warwickshire University Hospitals Research & Development Summit 2018.

Link to Dereks post >>>

Find more of Derek’s posts via his home page where you can also sign up for e-news  >>>

 



Implementing the EALING MSK JSNA PHE Workshop 2018 Narration  | WEBINAR  |  ARMA MSK HUB  |  Posted by Sue Brown 6 July 2018

Taken from the ARMA YouTube channel

A shortened summary of the webinar on including MSK in Joint Strategic Needs Assessments – slides with narration. The full webinar is worth watching, but this summary by Ian Bernstein is just 6 1/2 minutes long.


Arthritis and Musculoskeletal Alliance 

Registered Charity No: 1108851



ANNOUNCEMENT

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  >>>

www.disabilityrightsuk.org

Disability Rights UK

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

020 7250 8181

 



You may be partly conscious under general anesthesia  |    | Medical News Today | 6 July 2018

Fact checked by Jasmin Collier

Opening lines:

A new study explores the question, “Is consciousness fully lost during anesthesia, or is it preserved in a different state?” The answer may surprise anesthesiologists and patients alike.

Visit medical News Today’s website to opt-in for newsletters  >>>



MedicineNet ~ Newsletter  |  Main Headline: What Breath Says About Health  |  8 July 2018

FEATURED
What Your Breath Says About Your Health
If your breath smells weird, it’s probably just something you ate, like garlic or onions. But sometimes it can be something more.

Other headlines  >>>

  • QUIZ  |  What Is Walking Pneumonia?
  • SLIDESHOW  |  15 Easy Ways to Reduce Chronic Pain
  • ARTICLE  |  Indigestion (Dyspepsia, Upset Stomach Pain)
  • SLIDESHOW  |  13 Summer Health Hazards
  • SLIDESHOW  |  Diagnosing ADHD in Kids
  • SLIDESHOW  | Try Smart Brain Foods

Read all the above via the following link  >>>

MedicineNet ~ Newsletter

FROM OUR WEBMD SPONSORS >>>   Nursing and Rehabilitation Centers

 



#digitalhealthnews #digitalhealth #AI #analytics #digitalpatient

#clinicalsoftware #sharedrecocords #healthCIO #LHCRE #digitalNHS

Digital Health Newsletter | Digital Health | 5 July 2018

Link to the newsletter and links to other news sections >>>

Features  >>>

FEATURE | Happy Birthday NHS: A look back at its digital milestones

CLINICAL SOFTWARE |  Special Report: Observations and vital signsbirthday

HEALTH CIO | The CIO interview: Shauna McMahon, Frimley Health NHS Foundation Trust

News  >>>

DIGITAL PATIENT |  NHS England fulfils aim to have 70 apps in library by 70th birthday

CLINICAL SOFTWARE | Orion sells Rhapsody business for £105m

NEWS |  Last call for voting in Digital Health Awards 2018  

CYBER SECURITY |  Minister says opt-out data requests for 150,000 patients missed

DIGITAL PATIENT  |  Free NHS App to be available to all ‘by December’ following beta tests


Link to their homepage on WordPress where you can read more digital health news and opt-in for newsletters  >>>

Registered No. 9257440 | Vat No. 198 3531 71



 

Types of Service Dogs and How They Help Us| Blog:  The Unbroken Smile| Guest Writer | 2 January 2018

 

Visit ‘The Umbroken Smile’ to read more posts  >>>

See how things have changed since 2013 by taking a look at this post for comparison to the types of Service dogs available today in 2018, almost 5 yrears later.  

Learn About the Different Types of Service Dogs |   |  Anything Pawsable |  22 July 2013

 




Ronald W. Davis, PhD, Presents
An Overview of the Recently Funded NIH Project

Open Medicine Foundation – OMF | Published on 5 Jul 2018

OMF are pleased to share a new research update by OMF’s Scientific Advisory Board Director, Ronald W. Davis, PhD, produced by Ashley Haugen.


Dr. Ron Davis and Linda Tannenbaum, OMF ~ What we need to accelerate research  03 July 2018

A great update from Dr. Ron Davis Open Medicine Foundation’s (OMF) Scientific Advisory Board Director:

Dr. Ron Davis and Linda Tannenbaum, OMF ~ What we need to accelerate research

To read more about the work of the OMF visit their website >>>

www.omf.ngo/

Remember to opt-in for e-news to get updates into your own inbox


Address postal inquiries to:
Open Medicine Foundation
29302 Laro Drive
Agoura Hills, CA 91301

 



Barriers to Patient-Centered Research Aired at Harvard Symposium | EMR & HIPAA |    |  2 July 2018

An interesting read in this current climate of everyone aiming for patient centred approaches.  I only said myself last year that research was a little bit behind, but here in the UK things are changing and making it different to the US.  Personally speaking, from what I read, and hear, involving patient care in research is evolving, and, ‘it’, like any other directional change within business will not happen overnight.  One must remember all the constraints behind research to begin with before throwing us patients into the fold on top of it.  Regulations and policies are growing in number constanly putting limitations on research in places where the connections betwwen research and patients needs to be.

My personal opinion is that too many ‘policies’, and a lot of them quite outdated, spoil the broth!

Excerpt:

‘Involving patients in patient care is a surprisingly recent concern. There was a time when doctors made all the decisions, delivering them as if they had come directly from the entrails of an oracular temple. Visitors were severely limited at hospitals, because family members just got in the way of the professional staff. And although the attitude toward engaging patients and their families has softened somewhat in health care, rigid boundaries still exist in research.’ 

Read more via the link below  >>>

Find more EMR and HIPAA related news at the website where you can also opt-in for newsletters  >>>

www.emrandhipaa.com


Copyright © 2018 HealthcareScene.com, All rights reserved.
Healthcare Scene provides news, updates, white papers and webinars covering the latest in healthcare IT. Visit us online and see our network of Health IT websites at: www.healthcarescene.com



Latest edition! 

ARMA Newletter | Arthritis & Musculoskeletal Alliance  | July 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 JULY 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

The Highs and Lows of Healthcare  |  Jill Donahue  |  eyeforpharma  |  5 July 2018

‘For Doug Noland from Astellas, patient-centricity is personal, having seen the best and worse of healthcare in his own life’


 

Why MSLs And Sales Reps Should Join Forces | Katie Osborne  | eyeforpharma 26 June 2018

The case for aligning MSLs with sales reps is strong — if both sides play ball.


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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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.



 

#neurosciencenews #neuroscience

A selection from Neuroscience News via ~ Neuroscience Newsletter | 10 July 2018

  2018-07-09 

  2018-07-09

Neurosciencenews.com

Read more neuroscience news via this link where you can also opt-in for newletters like this one>>>

Neuroscience News |  Neurology  |  Robotics |  Psychology  |  Submit News

neurosciencenews.com

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



Happy birthday to the NHS

Celebrating the NHS at 70

#hearthealth #bhf  #healthmatters  #healthyheart #heartdisease #younghearts

British Heart Matters – magazine | Discover sensational strawberry dishes | British Heart Foundation  |  4 July 2018

Some of the headlines  >>>

  • Top tips for taking up tennis
  • Sensational strawberries without cream
  • Popular posts from the last 7 days
  • Breaking through medical jargon
  • Join in with The Big Stitch

Link to the newsletter  >>>


Copyright © 2018 British Heart Foundation. All rights reserved. British Heart Foundation is a registered Charity No. 225971. Registered as a Charity in Scotland No. SC039426.



Latest!   #mentalhealth #depression  #anxiety #stress #chronicillness  #invisibleillness

Psych Central  |  Psych Central  Daily Newsletter  |  11 July 2018

Headlines for today  >>>

  • Fearing Adulthood: 8 Potential Reasons
  • Feelings: The Good, The Bad, and The Ugly
  • Could Mental Health Apps Lead to Overdiagnosis?
  • PTSD May Hike Long-Term Health Risks in 9/11 Clean-Up Crews

This post is from 3 July Newsletter:

This is quite an empowering read to help inspire us as people, patients to strive onwards despite what life and our illnesses throw at us.  Don’t give up, keep going and fight it.

Positive thought can be very helpful as a tool when combined with meditation, mindfulness and Talk therapies.  ~ Carole


Opt-in for varying newsletters, bipolar; depression; anxiety and more > Home Page:

Taken from the site PLEASE NOTE >>>

 



#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 >>>

 



JUNE ROUND UP 

#NETCommunity #NeuroendocrineCancer #NETS 

RONNY ALLAN – LIVING WITH NEUROENDOCRINE CANCER NETwork with ronny© | RonnyAllan.NET – Community Newsletter May round up | 2 July 2018

“AWARENESS OF NEUROENDOCRINE CANCER AND ASSOCIATED ISSUES. SUPPORTING AND HELPING NET PATIENTS”

Ronny’s Community Newsletter  >>>

Blog Home Page  >>>

Living with Neuroendocrine Cancer

 



NEWLY ADDED

#Healthcare #HealthReviews #European #Medical #Journal 

European Medical Journal | EMJ 3.2 Now Available!  | paper.li | DAILY UPDATED

We review all of the breaking news from the major healthcare congresses across Europe

Read  via this link to the EMJ DAILY paper >>>

Link to EMJ 3.2  >>>


EMJ Rheumatology 4.1 2017  |  Taken from Twitter  @EMJRheum | 9 July 2018

Prevalence and Significance of Anti-Saccharoymces    in Primary         

Read the article via this link  >>>

 


Editor’s note

“EMJ 3.2 has entered the building! This truly multidisciplinary eJournal returns for its 10th issue and its second of 2018. EMJ 3.2 includes a plethora of high-quality peer-reviewed articles that detail a myriad of fascinating topics across seven therapeutic areas: urology, haematology, oncology, gastroenterology, hepatology, neurology, and reproductive health. This eJournal must not be missed.”

As written in the paper!

Very soon EMJ will have their own spot on the website where you will have access to the links to their community as well as their journals and information.  ~ Carole 

 



#chronicpain #patients #diagnosis #copingstrategies #acceptance #survey #patientvoice

Barriers to Chronic Pain Treatment Shared with FDA – Part One | Ed Coghlan  3 July 2018

 

Recommendations to the FDA About How to Improve Chronic Pain – Part Two |  Ed Coghlan  |  4 July 2018


After the Diagnosis: Finding a New Normal While Living With Chronic Pain| Michelle Peterson | via National Pain Report | 23 June 2018


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

nationalpainreport.com



#SoMe #PatientCommunity Platform

Weekly Digest – Mayo Clinic Social Media Network | 02 July 2018

This Week’s Highlights – Blog Posts >>>

Strategic and Altruistic Reasons for Physician Social Media Engagement | By Lee Aase, Director, Mayo Clinic Social Media Network  | 28 June 2018

Physician Reputation Management through Social Media Participation |  By Lee Aase, Director, Mayo Clinic Social Media Network  | 27 June 2018



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!!



#Rare #RareDisease #chronicillness #invisibleillness

banner that has zebra stripes and says "The Mighty, Rare Disease"

Rare Disease on The Mighty  |  6 steps to consider before going to the ER  | Ray Wood (Contributor) |  4 July 2018


Self Reflection by Carole

I love this and I struggled with this 2 weeks ago when I had a burst psoriatic blister on the underneath of the middle toe on my left foot. The smaller toe next to it was bent at birth but now it is catching the underneatrh of the toe which is how the blister burst.  Well you don’t put dressing on this type of psoriasis so it needs to be uncovered so after ummming and ahhing over the weekend and saying “no” “don’t do it!” to myself a lot !! I went to A&E because there isn’t anywhere to go for a dermatological emergency such as this and it is what I have been instructed to do.  I needed preventative treatment for a serious condition but treat with disdain and like a time-waster instead.


The last time I waited for a dermy appointment instead of going to A&E this is what happened >>>

I have approx 250 images


Apparently the advice that my consultants, 2 differing dermatologists, the first one retired, both giving me wrong advice was a ludicrous thing to suggest and it annoyed me because she said “I don’t know anything about your conditions” before she insulted my specialist dermatologists and GP.  They stuck a plaster/band aid on it and told me to buy a box… It was the wrong way to approach my medical problem, apart from the fact I have a latex allergy so the plaster which was only on my toe for a few minutes caused painful inflammation.

What I needed was for them to somehow dress my foot so that my toe couldn’t rub against the blister and keep bursting it open without actually covering the open wound in order to prevent infection.  I didn’t know it at the time but I was already carrying an infection through my Hidradenitis Suppurativa so my immune system will have been lower than normal, and yes it did get a little infected but I caught it early.  It has healed but the inflammation from the psoriasis/arthralgia, or even unknown and something different altogether, is still there in the whole foot like it has been for months.  Both feet are affected and both hands and it just keeps flaring.

The long and the short of it is that the trip to ER was a waste of everyone’s time and the people who treated me not only insulted me saying don’t shout at me when all I did was raise my vouice so I could hear myself over all the noise and then insulting my consultants, disrespting my disabilities and bascially left me feeling riled and fed-up!

WHY?  because this is an example of why I never go to A&E even when advised if my Pain gets too severe, or my skin develops lesions in awkward places, or my abdomen pain may suggest another Obstructive Bowel Disorder. 


Rare Disease on The Mighty  | The Unexpected Cost of Having a Pre-Existing Condition  |  Heather Shorten(Contributor) |  The Mighty  

Heather has Pompe Disease which is a rare illness that is estimated at 1 in every 40,000 births, inherited and often fatal disorder that disables the heart and skeletal muscles.

For more Rare on The Mighty visit this link below and you can choose to opt-in for Mighty newsletters  >>>


 

Mental Health at The Mighty  |  What does anxiety really feel like?  |  03 July 2018

For more Mental Health posts on The Mighty visit this link below and you can choose to opt-in for Mighty newsletters  >>>

The Mighty homepage >>>

 



Featured Image -- 12581



#Migraines

#CopingStrategies | Balancing Work and Migraines  |  Living Well with Migraines 

Living with migraines can be really difficult especially if you still work and they mean you take time off a lot because of them, or you require specific disability aids within the workplace to help you manage your condition as you work.  Maybe these aids make you stand out and you don’t like it, or they make you look like a ‘Bosses-Pet’ even though they are for your chronic illness and work are obliged to fulfill your needs wherever they can.

People can be cruel when they don’t understand, so this help sheet could be useful for you, and also the one that follows it titled: Talking About Migraines With Your Employer and Coworkers

Link to Balancing Work and Migraines >>>

Link to Living Well with Migraines  >>>

This was sourced via National Headache Foundation e-newsletter – If you’ve ever had a migraine at work… | 02 July 2018


Developed by Med-IQ in collaboration with the National Headache Foundation.

Med-IQ National Headache Foundation

Supported by an educational grant from Allergan, Inc.

© 2018 Med-IQ, LLC



#MigraineAwareness  #patientvoice

Migraines are NOT pretty, let me show you my migraine pose | Blog:  Counting My Spoons | Julie Ryan |  02 July 2018

In this post Julie discusses Last week, Elle Magazine and Cosmopolitan magazine posted a couple of articles that are just really demeaning towards those who live with migraines and are giving the wrong impression of people who suffer daily with migraines.  She shows herself in her own pictures to show what it really looks like and asks for help to get this message out there.

I’m so proud of our community and they way we’ve taken over the #migrainepose . Migraines are not pretty! Always speak up for yourself. ~ Julie Ryan

Migraines are not pretty I suffer with them myself and the problems that come with such as all the hypersensitivities being super heightened make it impossible to lift my head never mind tidy hair and take a picture. ~ Carole

 



PHARMA EVENT | OCTOBER 16-17TH | LONDON

Im-patient UPDATE 

Thankyou to everyone…

…who has participated in the design of ‘Impatient’-London event in October, and the ‘Impatient’ Philadelphia event also in October.

You can now take a look at the brochures for ‘Patient Summit Europe’, ‘Patient Summit USA’ and book your places via the following links >>>

At Patient Summit Europe 2018 (October 16-17) we will be bursting the patient centricity bubble; challenging pharma and patients to come together in true partnership and discover a real shift to solution-based thinking.

Highlights from the agenda include  >>>

  • im-patient” – a new feature in 2018, half a day designed, created and hosted by our patient steering committee
  • Industry leading case studies, including IMI’s Big Data for Better Outcomes, Novartis’s “EPALCO” and Merck Group’s “MS in the 21st Century” projects
  • Co-presentations between pharma and patients, including Janssen, Pfizer and more
  • Interactive roundtables on both days dedicated to the topics patients want to discuss with pharma most

Patients who are unaffiliated with pharma business and consultancy will get a free pass.

All pharma or solution providers who book from you can have the advantage of a €200 discount.

Get your copy of the EUROPE brochure now – for the full details of the agenda and “im-patient” summit



 

At Patient Summit USA 2018 (October 23-24)

Key themes  >>>

  • Patient Critical = Business Critical – Recognize that patient value translates to business value – maximize social benefits to maximize your performance
  • Clear the clinical bottleneck – Reimagine your clinical trials through innovative patient focused design and the removal of antiquated endpoints
  • Work with patients, not for patients – Co-create solutions with patients in order to generate maximum uptake
  • Informed patients are stronger partners – Promote health literacy to build an educated patient population who can supercharge your efforts

Get your copy of the USA brochure now – for the full details of the agenda and “im-patient” summit.


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.

THANKYOU IN ADVANCE FOR READING AND PARTICIPATING


The Im-Patient Summit - Logo



#MentalHealth  #children 

Mental Health Foundation |  How we’re helping children with their mental health  | 02 July 2018

Mental health prevention in children is a hot topic at the moment and this blog post discusses why it is even more important now than before.

Preventing mental health problems in children is more important than ever |  Jane Caro |  Mental Health Foundation |  28 June 2018

Visit the Mental Health Foundation website for more blog posts and articles and opt-in for e-newsletters  >>>

Mental Health Foundation Copyright © 2018. All Rights Reserved
Registered Charity No. England 801130 | Scotland SC 039714/Company Registration No. 2350846

 



#Arthritis  #Arthritis #PatientVoice #Patients 

At Home with Arthritis: Cleaning, Laundry and DIYs  |  Arthritis Today via Arthritis Foundation | 3 July 2018

Headlines:

  • At Home With Arthritis
    • Your home should be your sanctuary. But when you’re living with arthritis, caring for a house can sometimes be a source of pain or discomfort. Thankfully, there are dozens of ways to take on household tasks without stressing your joints.
  • DIY and Done
  • Clean Machine
  • Head to Bed
  • Take a Load Off
  • You First

Arthritis Today via Arthritis Foundation Newsletter 3 July 2018

 


What’s Your RA Severity Risk? | Arthritis Foundation | 28 June 2018

What’s Your Risk?

Each RA diagnosis is different from the next, but certain factors can help determine if you’re at risk for developing a severe form of the disease. For many people, knowing their RA severity risk allows them to better manage disease progression. Learn how to identify if you’re at risk  >>


Discussing the following:

  • Take Control
  • Seeing Is Believing
  • Get Tested
  • Speak Up

Follow this link to read more  >>>


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

© 2018 Arthritis Foundation. 1355 Peachtree Street – Suite 600 – Atlanta, GA 30309. All Rights Reserved.

 



#MentalHealth

LATEST!

Happiful Magazine E-newsletter | You’re having a laugh | 29 June 2018

Good News
Meet Blueberry, the stand-up robot

Happiful Magazine You’re having a laugh

Visit the Happiful website to read past issues online, FREE, and you can also opt-in for newsletters  >>>

happiful.com/

 



Awareness Campaigns

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

 



 

NIHR Life Sciences Industry

The latest industry news, funding opportunities and events from the NIHR

NIHR Clinical Research Network

National Industry Event – The Future Now

10 October 2018 | De Vere Grand Connaught Rooms, London

For more NIHR news visit their website via this link  >>>

www.nihr.ac.uk/


Find NIHR Research on Twitter:‏  

www.ct-toolkit.ac.uk/

Designing a clinical trial? See the for advice on best practice:

 



 

PLEASE CAN YOU PARTICIPATE & SHARE, THANK YOU  🙂

#

#GlobalSurvey #Research #Rheumatic # Musculoskeletal #RMD #SoMe #SocialMedia

Shared via Simon Stones | Twitter | 28 May 2018

Do you have a rheumatic and musculoskeletal disease ()? If so, you’re invited to take part in a global survey looking at what people with RMDs think about using for health-related purposes.

To take part follow this link to the study >>>

 

About Simon >>>

Follow on Twitter >>>  Simon Stones  @SimonRStones

BSc (Hons) • Doctoral Researcher in Child & Family Health •  &  Member •   Trustee • Patient Consultant/Leader

 



PLEASE SHARE, THANK YOU  🙂

#The Big Leap #MS
Take a leap on the wild side and help stop MS.  |  MS Society


‘On Sunday 2 September, join our team of daredevils and take the leap of a lifetime at our brand new and exclusive MS Society skydiving day, the Big Leap.’  MS Society

The Big Leap Take a leap on the wild side and help stop MS.


Visit the MS Society for more news and events  >>>

www.mssociety.org.uk/



 

#Rheumatology

#research #clinicaltrial #chronicpain #lowbackpain #diaphragm #osteopathy

Tending to the diaphragm may relieve chronic low back pain | 

From the introductory paragraph:
Researchers set out to investigate, conducting the first ever clinical trial to test the efficacy of special osteopathic techniques tending to the diaphragm for easing chronic low back pain.
Read more via this link  >>>

For more medical news visit the website and opt-in for newletters  >>>

 



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

Latest issue!  NICE Newsletter | June 2018

Including this month’s PODCAST:   Eradicating HIV, is it possible?

Featured News:  

  • Therapy offered within one month to prevent PTSD, says NICE
  • Life-extending lung cancer drug will be more widely available on the NHS after NICE review

From the BLOG:

  • Improving access to new treatments in rare diseases
  • Have you read my notes, doctor?

Link to newsletter >>>


National Institute for Health and Care Excellence – NICE –  provides national guidance and advice to improve health and social care.

‘Improving health and social care through evidence-based guidance’


Visit the website for other news and you can also choose to opt-in for alerts and newsletters >>>



<<<<<  Rie my co-editor’s Choices  >>>>>


The next 3 post shares were kindly selected by my newly appointed Editor ‘Rie‘, Rie Lopez, MPH,  who you will be able to read all about via our new page that is currently under design ‘About the TEAM‘, very soon.  A fabulous new addition to my team here, from the US, to help us bridge the advocacy gap between the UK/Europe & US.  


We are Twitter buddies outside the website and both also #patients #patientleaders #healthadvocates #researchadvocates #patientVOICE #chronicillnessVOICE #WEGOHEALTH #Savvy 


Together we hope to build and create a safe haven for advocates to come and be themselves but also to endeavour to help all patients and non-patients find the best SoMe patient platform that suites them.  Now that many more platfoms are appearing a directory of these sites would be a useful tool.

We have lots of great ideas to bring you including a, ‘#twitterchat’, as we slowly update and organise the site over the course of the next few months.  We are also helping each other to learn the differences between our healthcare and public health systems as we work together.


PLEASE NOTE:  Psychiatry Advisor, Rheumatology Advisor and Neurology Advisor are all aimed at #Professionals


Rie’s LATEST selection | Psychiatry Advisor | 26 June 2018   >>> 

Psychotic Experiences Have Poorer Health-Related Quality of Life  |  Psychiatry Advisor Contributing Writer | 12 June 2018

Rie says:

In a large study drawn from a sampling of 33,370 adults from 19 countries included in the WHO World Mental Health Survey, researchers sought to determine the effect of psychotic experiences on quality of life.  Using five indicators, and adjusting for variations in socio-demographic qualities, the researchers found a significant correlation between psychotic experiences and perceived poor quality of life.
Link to the article >>>

 


 

Latent Toxoplasma Infection Occurs More Frequently in Schizophrenia  |  Psychiatry Advisor Contributing Writer |  28 June 2018

Rie says:

In a small study of 250 individuals with schizophrenia, drawn from the FondaMental Expert Center Cohort between 2015 and 2017, researchers found 184 if the individuals had latent toxoplasmosis.  This rate is higher than found in the general population.  Study participants with latent toxoplasmosis who recieved Anti-Toxoplasmic Activitysaw a reduction in low-grade peripheral inflammation and symptoms of depression.  While further study is needed, this could prove promising for future treatment options.
Link to the article >>>

You can find more articles of interest via the Psychiatry Advisor website by following this link where you can also opt-in for newsletters  >>>

THANKYOU Rie for your ‘pick of posts’

 



Siemens Healthineers

Which one is the right breast biopsy technique?  | Newsletter | 28 June 2018

If you can’t see it, you can’t biopsy it
Every biopsy technique has its strenghts and weaknesses

Which one is the right breast biopsy technique?


Siemens Healthcare GmbH | Henkestr. 127, 91052 Erlangen, Germany
siemens.com/healthineers


Information for healthcare professionals. The Siemens Healthineers newsletter and websites, including but not limited to siemens.com/healthineers and its affiliated sites, provide an online resource for healthcare professionals

enews.healthcare@siemens.com

 



 

chronicillnessbloggers.com
Connecting You to the Chronic Illness Community

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

 



#Relief

RELIEF Newsletter  |  June 19, 2018

RELIEF is a service provided by the IASP Pain Research Forum

New This Month

  • When the Immune System Attacks Its Own Proteins, Pain Can Emerge
  • Studying Sleep and Pain in Mice: A Chat With Alban Latremoliere
  • NIH Announces HEAL Initiative to Combat Opioid Crisis

Did You Miss?

  • Could Cannabis Legalization Help Ease the Opioid Crisis?
  • Sex and Gender Differences in Pain: A Chat With Edmund Keogh
  • Stopping a Pain Memory Before It Forms: A SPOT-ON Approach

You can read all of the above by following this link >>>

RELIEF Newsletter – June 19, 2018


June 2018 Highlight:
NIH Announces HEAL Initiative to Combat Opioid Crisis

Spread the Word about RELIEF

Please let your colleagues and friends know about RELIEF. 

Please pop along and sign up for the newsletter and content alerts HERE.


Copyright © 2018 RELIEF, All rights reserved. RELIEF is a service provided by the IASP Pain Research Forum.

Very soon IASP Pain Research Forum. 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

 



#SummerFundraising

#hearthealth #bhf  #healthmatters  #healthyheart #heartdisease

British Heart Foundation |  Keep hearts beating and blood flowing | 13 June 2018

It’s not too late to choose a fundraiser, so get your FREE FUNDRAISING KIT get going and make your summer count! Every pound you raise will help fund vital research, giving hope to the 7 million people in the UK living with heart and circulatory diseases, including stroke, vascular dementia and diabetes.

You can get you fundraising kits via the following BHF newsletter link  >>>

Why not visit the website and register for ‘British Heart Matters’ magazine and newsletters  >>>

The British Heart Foundation >>>

British Heart Foundation is a registered Charity No. 225971. Registered as a Company limited by guarantee in England & Wales No. 699547. Registered office at Greater London House, 180 Hampstead Road, London NW1 7AW. Registered as a Charity in Scotland No. SC039426



“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



#PHARMA #pharma #pharmanews #pharmaphorum

#medicalinnovation #blockchain #healthcare #nanotechnology #medicine #realworld

Deep Dive Magazine ~ Future Pharma 2018| Pharmaphorum  | 6  June 2018

“As pharma’s model is increasingly disrupted, how will health care and drug development progress? Click the button to read our preview article from the Medicines Discovery Catapult.” Quoted from the cover

What you can read about via the link below  >>>

  • Chris Molloy, Medicines Discovery Catapult, explains why the future of medical innovation lies with the industry’s SMEs
  • Karen Taylor, Deloitte, offers six predictions for the course of our industry into 2022, both evolutionary and revolutionary
  • How Blockchain could enable a truly global healthcare ecosystem
  • And a look into real-world examples of how nanotechnology is now advancing medicine, and the challenges faced
  • Sign up here to ensure you receive our next Deep Dive Oncology special report from ASCO when it is published at the end of this month, and future issues free on publication.You can read our previous editions here: Deep Dive: Patient CentricityDeep Dive Market Access II.

If you like what you see then you can subscribe to the ‘Deep Dive’ magazine and daily updates via the Pharmaphorun website.

Link to the magazine >>>

Sign up for the pharmaphorum daily newsletter and /or the ‘Deep Dive’ magazine via this link  >>>

Kind regards
Adam Jeffery
Commercial Director, Deep Dive

Copyright © 2018 pharmaphorum media limited, All rights reserved.
Subscribed to receive Deep Dive via registration form.

A fabulous pharma magazine!

 



EVENT

#healthcare #healthcareprofessionals #HCP #MSA

 Multiple System Atrophy Trust | Health and Care Professionals Study Day

We are pleased to announce our next study day for Health and Care professionals will be held in Newcastle on 11th October 2018.

Multiple System Atrophy Trust | Health and Care Professionals Study Day

About the Multiple System Atrophy Trust  >>>

https://www.msatrust.org.uk/



#GDPR & the new Privacy Laws.  What do they mean for you?

What’s changing and what’s not under new data privacy rules | Anick Jesdanun  | physorg.com  | 18 May 2018 

Excerpt:

‘Not much will change for you, at least right away; companies will keep on collecting and analyzing personal data from your phone, the apps you use and the sites you visit. The big difference is that now, the companies will have to justify why they’re collecting and using that information.’

Read more by following this link  >>>

 



 #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/



         

 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?!


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

Visit Rock Off Fibro on Twitter  >>>

 



Newsletters via News Medical

Latest!  News Medical |Dermatology Newsletter |  31 May 2018


New!  News Medical |Diabetes Newsletter | 09 July 2018 


News Medical |  Endocrinology  Newsletter |  10 April 2018

 


New!  News Medical |  Respiratory Diseases  |  09 July 2018

 


New! News Medical |Sleep Disorder Newsletter | 2 July 2018

 


Latest!  News Medical | Pediatrics Newsletter | 11 July 2018

 




Changeover!

In the Chillout Lounge!

852 Hz ❯ AWAKEN INTUITION || Remove Fear, Self Doubt & Subconscious Fears | 852Hz | Meditative Mind |  4 July 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 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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