#chronicillnessVOICE | 27 September 2018 ~ a health newsletter for everyone! #chronicillness #notjustpatients #PAM2018 #EDS

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 due to ill health & moving house!




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!!



Before you start 

PLEASE NOTE: That myself and fellow FibroFlutters are patients leading a patient support group and a patient led social media network for our advocacy, networking and support services, we are not medical professionals.

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




 

WOW! it’s WEGO TIME already, are you prepared for 3 days of virtual celebrations? | WEGO Health Awards Schedule Of Events 26 – 28th September

Well folks it’s that time of year to celebrate being patient leaders, it doesn’t matter if you are a finalist, or not, the work you all do is important and the next 3 days you can celebrate your successess, and mingle, get to meet new people over on FB and on Twitter too.

🏆🎆❤🦓💙🦋🎉💜🎆🏆

DAY 2 ~ Are you ready for more celebrating

Kicking off Day 2 with a Facebook Live at 11 am ET.

Good luck to all finalists

🏆🎆💜🎉🦋💙🦓❤🎆🏆


Well what a day yesterday with some awesome winners who well deserve the recognition and khonour of their prizes.

🏆 Congratulations to all of the WEGO Health Awards finalists & winners 🏆

Want to know when specific award announcements are so that you can tune in?

The schedule of events below allows you to save announcements etc to your calendars so that you don’t miss the parts that you really want to see.

REMEMBER to check in to be in with the chance to win one of Wego Health’s prize give aways which you can read about how to participate in via this link  >>>

Follow this hashtag


WEGO Health is a mission-driven company dedicated to transforming healthcare by harnessing the experience, skills and insights of Patient Leaders.
Copyright © 2018 WEGO Health All rights reserved.
WEGO Health 50 Milk St, Boston, MA 02109

 



7-types-of-fibro-pain-framed

#PAM2018  #fightfibro #fibro2018

Fibromyalgia News Today Weekly Columns | | 26 September 2018

Fibromyalgia Patient voices


Headlining in this issue  >>>

  • Pushing Against My Seasons of Stress | Sep 26, 2018  | Christine Lynch
  • How to Deal with Sensory Overload | Sep 25, 2018 | Robin Dix

Other headlines  >>>

  • Recent Posts Swimming Eases My Fibromyalgia Symptoms
  • I’m Thankful for Community Caregivers and the Devices that Help Me on My
  • Journey
  • My Opportunity for Laughter Was a Gift
  • ‘Overdoing It’ Has Consequences
  • What I Would Tell Myself on Diagnosis Day

Read the above via this link  >>>

 

Why not visit Fibromyalgia News Today website to read more posts and opt-in for e-newsletters  >>>



BioNews Services, LLC
5307 E. Mockingbird Ln.
5th Floor
Dallas, TX 75206
Email: info@bionewsservices.com
Phone: 1-800-936-1363
Copyright © 2018 BioNews Services, LLC, All rights reserved.

 



 

#PAM2018 #Arthritis  #Toolkit #Exercise #Fitness  #HealthCare

The Arthritis Foundation  |  Go Outside and Play! |  25 September 2018

Articles  >>>


  • Walk This Way:  12 Benefits of Walking
    • Walking is easy to do and offers many benefits, especially for people with arthritis.




Get your Better-Living Toolkit via this link  >>>


 

Living With Arthritis webpage where you get access to a whole host of help and advice, plus you can also, opt-in for e-newsletters  >>>

PLEASE NOTE: This tool does not provide medical advice. It is intended for informational purposes only. It is not a substitute for professional medical advice, diagnosis or treatment. Consult your physician before participating in activities described by this tool.
© 2018 Arthritis Foundation. 1355 Peachtree Street – Suite 600 – Atlanta, GA 30309. All Rights Reserved.

 



#chronicpain #PAM2018 #fibro #backpain

Group Therapy for the treatment of #fibromyalgia & chronic #pain | BARMAC51 |  27 September 2018


Opening Paragraph:

‘You read something new every day on treatments for #fibromyalgia and chronic #pain, but now they are saying that group therapy can help pain sufferers. A trial published in the Lancet, revealed that after only six sessions of group therapy, it showed patients still found improvements a year later.’



Group therapy for a very long time was very daunting and off-putting for me, but then again once upon a time if those words got uttered it meant they were sending you to pyschotherapy.  I’m not joking either!

When I was in my early twenties  I was classed as having a borderline personality disorder but no-one told me, I just happened to see it in my medical notes during a routine trip to the GP.  Naturally, seriously offended and heavily insulted because all I wanted was someone to believe that I was in pain.  Instead they gave me a mental health disorder that I now have to live with the stigma of because it’s in my medical records!

Not only that they spent at least 15 years telling me it was all in my head, I mean no-one is going to partake in therapy, which is condescending!  I have ended up with chronic anxiety disorder as a result, depression and it wouldn’t surprise me if I probably have a BPD now especially after how my marriage has affected me.

Nowadays, believe it, or not, it is lot different thankfully as Barbara shows us in this post, and group therapy for pain means something completely new.  Mixing with other people like yourself but in a less clinical format lessens the stress a person feels so it is going to reduce your pain levels and the study that Barbara speaks about will hopefully continue to prove it.


Sadly, I don’t think I’ll ever shake the stigma over my head even though that was 20+ years ago. Every hospital appointment it is part of my history that consultants read and because they have to they include it when assessing me.  It can be damaging to patients especially our self-worth to be repeatedly judged on things like that from 2 decades ago.

Thanks for reading ~ Carole


Read Barbara’s latest post via this link  >>>


Visit Back Pain Blog UK via the link below and opt-in for e-news  >>>

 



Patient Newsletter  |  Is overtime wrecking your health?  |  26 September 2018

Main Headline  >>>

What overtime is really doing to your health?

Healthy living tips from the experts

Should you take vitamin D every day?

Are e-cigarettes a safe way to quit smoking?

What is sexual consent?

Who should take aspirin evelry day?

This week’s recipes

Sticky soy citrus baked salmon

Sausage pilaf


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 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.

Patient.info

 



#PAM2018

#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 journalistwho 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

On Twitter:  @johnpringdns


Visit the website to check out their latest disability news >>>


Headlining today on Disability News Service (DNS)>>>

Readspeaker Tool enables you to listen to the articles


Baroness Campbell head and shoulders at the committee hearing



 

Esther McVey speaking in the House of Commons

 



The International Standard Serial Number for Disability News Service is: ISSN 2398-8924

 



 

#Neuroscience #neurology #neuroscience

Neuroscience Newsletter |  26 September 2018

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



Practicing Mindfulness Benefits Parents and Children
2018-09-26 
According to a new study, practicing mindfulness can have beneficial effects on both parents and children. The study reports parents who practice mindfulness have better control of their emotions, which helps them to apply consistency and encourage their children. Children showed improvements in social skills and a decrease in negative behaviors when interacting with others.

Diversity in the Brain: How Millions of Neurons Become Unique
2018-09-26 
A new mathematical model has shown how different gene variants enable random diversity in neurons.

 



Neuroscience News |  Neurology  |  Robotics |  Psychology  |  Submit News
Neuroscience News
4747 Research Forest Drive, STE 180
The Woodlands Texas 77381
USA


Neuroscience is a multidisciplinary science that is concerned with the study of the structure and function of the nervous system.

 



 

#mentalhealth #pyschcentral

fibroflutters mental heal discussion group cover pic

Psych Central Newsletter |  Psych Central Daily |  26 September 2018

Today’s headlines  >>>

  • Connection: The Answer to Addiction? | by Mike Bundrant
  • Taking Care of Your Mental Health at Work | by John M. Grohol, Psy.D.
  • Rat Study Shows Link Between Hunger and Mood | by Rick Nauert PhD
  • Mouse Study: Lung Inflammation from Childhood Asthma May Be Linked to Later Anxiety | by Traci Pedersen

Read the above posts via this link  >>>


Visit the website for more posts and select to opt-in for their newsletters  >>>

psychcentral.com/



Copyright © 2018 Psych Central, All rights reserved. 
Our mailing address is: 
Psych Central
PO Box 5464
Bradford
MA 01835

CERTIFICATE OF COMPLIANCE Psych Central is in compliance with the HONcode
Logo certificat HONCode

Society for Participatory Medicine


 



 

#PAM2018


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

 




 



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


UPDATED LIST

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

A WEEKLY paper | The Receptive Sound Therapy Daily

DAILY! | 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

DAILY!  The Chronic pain  Support from Coach Amber Rose 

Updates every couple of days!  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 


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

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




“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

 



#PAM2018

#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



 


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

 




patient header 2PAINT


Only 3 weeks to go and we’ll be packing our little cases and boarding the train to London, will you be there?

I can’t believe how time has flown past and the conference is only a few weeks away.  It is really exciting to be involved and helping to collaboratively bring about changes within the world of medical healthcare. 

Helping to close the gap between pharma and patients and increase relations, encourage collaborations and stave off the ideas that patients can be manipulated.

Thanks to eyeforpharma’s regard towards Patients, Patients Included, and giving us a platform to share our patient voices, and our input during roundtables and panel discussions at their pharma conferences we can help pharma improve the products and services they make.  Help improve patient engagement programs / or, PSP’s Patient support programs between pharma and patients in ways that improve service design, product and service quality using collaborative methods and utilising all stakeholders to produce end results.

  • Will patient-centricity win-over pharma in London, how are companies becoming patientcentric, which companies are trying to be patientcentric?

  • Is patient- engagement working for pharma, what isn’t working? It can’t all be perfect!?

  • How is the concept of ‘Patient-engagement’ progressing is it proving to be useful, or does it need to be reassessed as a tool?


Innovation is also hot-topic as new ways of producing things have developed, including the use of AR, VR, AI, 3D printing and robotics to help improve surgical procedures, general medication delivery systems and even new bones and not that long ago even skin tisue, for a few examples.

Also, the different new ways that innovation is assisting clinical research and especially biopharma, health education videos for hospitals and HCP’s, and much more from the world of digital. Will we see some of that in London within the innovation, science and technology sector of the conference?


Of course aside from the World of Medical Affairs is the Impatient Conference and the part of the journey where we really do hope to make a difference.  It really has been designed by patients and the hope is that we can help bring patients and pharma closer together at this Pharma & Patient Co-creation event. 

  • How are pharma increasing patient relations, are they rebulding our trust yet?

  • How will we as patients convince pharma to make the necessary changes required to rebuild their pharma-patient relations?

  • What does pharma believe it should do? Do we as patients agree with pharma? If not, how do we compromise so that solutions can be formed and progression can continue.  Otherwise this time next year we will still be discussing it!

It’s time for pharma to stop ‘saying’ and start ‘doing’, be more proactive and begin to move forwards.

(Opinions are my own)


#pharmanews #eyeforpharma #pharma #tech #EVENTS #ai #digital #patients

Patient Summit Europe
16-17 October 2018, London UK


Europe’s Top Pharma & Patient Co-creation platform to attend in 2018

“If you don’t partner, patient centricity will never become more than just an idea.”

  • 250+ attendees
  • 40+ speakers
  • 15+ case studies
  • 20+ roundtable discussion topics

Including  >> 

The Im-patient Conference which is new, and its bold.

No longer is eyeforpharma HQ in the driving seat, instead it is entirely designed, created and hosted by patients. We believe that in doing so, we will capture the true essence of what patients want – and put them in the driving seat.


Follow this link to see who is attending and register to join us  >>>

#efpPatient Patient Summit Europe


Come and see me take part:  17:00 – 17:40 (Day 2)  17th October >>>
Panel: Candid patient perspectives on the good, the bad and the ugly of service design


Other panelists:
  • Teresa Ferreiro | Patient Advocate
  • Trishna Bharadia | Patient Advocate | eyeforpharma Award Winner
  • Paola Antonini, MD, PhD | AISC Scientific Committee Member, Head of Clinical Research & Training Initiatives | AISC

Moderator:  Paul simms | Chairman| Eyeforpharma



  • How do patients really experience pharma’s services?

  • Can pharma better build trust with patient communities to develop productive collaborations?

  • Innovation is supposedly the ‘silver bullet’, but where do patients really see the opportunity for change?

#efpPatient Patient Summit Europe

Maybe I’ll see you there ~  Carole Sian

Patients Included

eyeforpharma Patient Policy ~  social.eyeforpharma.com/patient-policy

 



 

EVENT | eyeforpharma | Marketing and Customer Experience Europe/London 2018 Oct 16-17th

Running alongside the Patient Summit

Marketing and Customer Innovation Europe 2018

Join the most forward-thinking meeting of leading marketers in Europe and learn to:

  • Redefine HCP relationships
    Develop a deeper educational partnership with your customers and transform engagement
  • Embrace digital. Be the future
    Implement a digital-first communication strategy for effective and efficient customer interaction
  • Educate to innovate
    Eliminate fear of innovation by empowering your workforce with the capabilities needed to form lasting HCP relationships
  • Deeper insights, real value
    Analyse data for actionable insights that result in a better understanding of patient needs and position you as a trusted presence

 


image001


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:

social.eyeforpharma.com/
Follow eyeforpharma on Twitter:
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.


eyeforpharma logo



FIBROfLUTTERS LOGO ON WHITE PHOTOTASTIC

Awareness Campaigns

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



#PAM2018

         

 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

 



 #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 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




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 offering online support via our social media network across the globe.

PLEASE NOTE:  We are not medical professionals nor claim to be, and remember that you should always consult your doctor about any health problems and not use Dr Google, or rely on information that you may read online through 3rd 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 


MANY THANKS in advance for your understanding –

from the administrator – fibrofly73

 


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



Got something you’d like to suggest or even just talk about please contact us via this form

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