#ChronicIllnessVOICE Evening Edition: ~ a health newsletter for everyone! #notjustpatients #chronicillness| 12 July 2018

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

#notjustpatients

Thank you everyone for your support.  ~ Carole 



Posts are Not in chronological order!

PLUS

Meditation 

KUNDALINI RISING || 432Hz Music to Balance Male Female Energy || Healing Music for Meditation | 5 February 2018

Meditative Mind  Published on 7 Jun 2018
It’s at the end!



 Welcome


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FibroFlutters continuously
Advocating for a Multi-Disciplinary / Patientcentric 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!!



 

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.

Visit Ronny’s blog via this link >>>

Living with Neuroendocrine Cancer

 



 

Latest!

#alzheimers  #dementia  #care  

Alzheimer’s Reading Room Newsletter |  Bob De Marco| Headliner:  Do Persons Living with Dementia Feel Abandoned? | 11 July 2018

Also including  >>>

  • 1 Fact About Alzheimer’s That Remains a Mystery
  • Communication in Alzheimer’s World
  • How to Give the Greatest Hug Ever Invented

and much more…


 

Alzheimer’s Reading Room Newsletter |  Bob De Marco| Headliner: 7 Ways to Cope with Aggression, Anger and Meanness  |  9 July 2018

Also including  >>>

  • Deficits in Executive Function in Alzheimer’s and Related Dementia
  • “Skinny Fat” in Older Adults May Predict Dementia, Alzheimer’s Risk
  • Alzheimer’s Repetitive Questions, Behavior and the Role of Communication

and much more…


Why not subscribe to the AlzheimersReadingRoom.com. This is a free service. Join 40,000 active readers.
https://bit.ly/2M4G4cu
The Award Winning Alzheimer’s Reading Room Knowledge Base is considered to be the highest quality, deepest collection, of information on Alzheimer’s and dementia in the world.
https://bit.ly/2LwvkTc
#light #brightlight #nursinghome #assistedliving #adultdaycare #activitydirector 
#education #society #alzheimersreadingroom



#Patients  #NewHealthCare  #healthcare  #cancer

THE NEW HEALTH CARE  | Sometimes Patients Simply Need Other Patients |   By Aaron E. Carroll Austin Frakt The New York Times  |  9 July 2018

Double click to access the article  >>>

For more news stories visit ‘The New York Times’ website  >>>

 



#WHO  #health  #healthcare  

WHO is working to protect your most precious possession – your health | World Health Organization  |  12 July 2018

About WHO – World Health Organisation  >>>

www.who.int/about-us

WHO Home Page  >>>

www.who.int

Copyright © 2018 World Health Organization, All rights reserved.


 WORDPRESS Blog: Let’s Do It for ME | IIMEC13 DVD Out Now  | 12 July 2018

Excerpt:

‘IIMEC13 marks 13 years of commitment to biomedical research into ME by Invest in ME Research. A remarkable achievement, level of commitment and perseverance by a small group of patients and carers, ably supported by scientists and clinicians working to the same high professional standards.’

Read more via athe following link  >>>

For the blog and more news visit the ‘Let’s Do It For ME’ website  >>>

 



Latest!

MSWorld, News, Events & More!  |   9 July 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!

Latest from MSWorld, News, Events & More!

www.msworld.org



#WEGOHealth  #PatientInfluencers  #PatientLeaders #healthcare 

Why Bigger Isn’t Necessarily Better for Patient Influencers | WEGO Health |  02 July 2018

Learn about WEGO Health via the following Link  >>>

WEGO Health is a mission-driven company dedicated to transforming healthcare by harnessing the experience, skills and insights of Patient Leaders.

Are you a Patient Leader?  Follow this link and come and join myself and Rie in the WEGO Health Patient Leaders Community on FB  >>>

50 Milk Street, 16th Floor
Boston, MA 02109

 



#MultidisciplinaryApproach #footproblems #rheumatoidarthritis 

Multidisciplinary recommendations for diagnosis and treatment of foot problems in people with rheumatoid arthritis  |  Journal of Foot and Ankle Research  |  04 July 2018

  • Marloes Tenten-Diepenmaat
  • Marike van der Leeden,
  • Thea P. M. Vliet Vlieland,
  • Joost Dekker and
  • on behalf of the RA Foot Expert Group

Sourced via:  www.biomedcentral.com/

 



#LocalResource #HOMENEWS #FibroFluttersSunderland

Citizens Advice | Sunderland, Tyne & Wear ~ UK

Including information about the following  >>>

Advice session times

Telephone advice times

Access details

www.citizensadvice.org.uk/about-us


Copyright © 2018 Citizens Advice. All rights reserved.
Citizens Advice is an operating name of the National Association of Citizens Advice Bureaux. Registered charity number 279057
VAT number 726 0202 76 Company limited by guarantee. Registered number 01436945 England
Registered office: Citizens Advice, 3rd Floor North, 200 Aldersgate, London, EC1A 4HD

 



#GlobalSurvey

PLEASE CAN YOU PARTICIPATE & SHARE, THANK YOU  🙂

  #  

 #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 >>>

www.soscisurvey.de/socialmediarmds/

About Simon >>>

Follow on Twitter >>>  Simon Stones  @SimonRStones

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

 



#whitepaper

 #PopulationHealthManagement #NHS #IBM #GGI 

WHITEPAPER | Thought Leadership Mailer – How Population Health Management will deliver a sustainable NHS ( GGI & IBM Watson Health ) | Digital Health e-news | 29 June 2018

IBM sign-up required to read

Link to Digital Health e-news >>>

Sign up for newsletters and for more Digital Health news via this link  >>>


White paper details  >>>

Title: How population health management will deliver a sustainable NHS
Date: February 2018
Authors: Andrew Corbett-Nolan, Chief Executive, GGI Divia Mattoo, Consultant, GGI Laura Tantum, Project Manager: Knowledge and Research, GGI 

Reviewed by: Darren Grayson, Director of Delivery, GGI
Designed by: Emiliano Rattin, Creative Manager, GGI


Digital Health Intelligence
Digital Health features are managed and maintained by Digital Health Intelligence © 2018
Registered Office: China Works, London SE1 7SJ Registered No. 9257440 | Vat No. 198 353 171

 



Sorry for any inconvenience as we go through a bit of website restructuring

My Disability Matters News & Opinion Digest has moved to it’s own space and all attempts will be made to update daily.

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

Many thanks



 

LATEST ISSUE!

FLARE MAGAZINE  #fibro  #ME  #CFS 

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

July 2018

Read the magazine via this link >>> 

Flare – The ultimate guide to Fibromyalgia, M.E & Chronic Fatigue

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

Flare Magazine website 



#ThePsychologist  #Research  #magazine  #BPSResearchDigest

BPS Research Digest  | 28 June 2018

‘Every week we bring you engaging reports on the latest psychology research. Anyone can subscribe free. We also provide daily updates on the latest psychology research via our app and on varying social media channels.’

The Psychologist is the monthly magazine of the British Psychological Society that you can find via this link  >>>

Visit The BPS website and opt-in for news updates and newsletters  >>>

Find BPS Research Digest on Twitter >>>


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.

 



#MS  #multiplesclerosis 

The Buzz, MS Society | Sit back and catch up on the latest MS news and stories | 29 June 2018

Featuring  >>>

  • Watch: Treatment Stories

Treatment Stories, includes honest accounts from people with relapsing MS about their treatment decisions.

  • Dealing with Dr Google
  • The impact of the PIP 20 metre rule
  • Risk factors for early progression
  • Play our Summer raffle!

Read these via the following link  >>>

You can find out more about the MS Society and subscribe for the’The Buzz’ Newsletter  >>>


MS Society

Privacy & Cookie Notice

Registered charity nos 1139257 / SC041990. Registered as a limited company in England and Wales 07451571

 



 

 

#MEAction Daily Digest | Main Headline:  OMF Receives $2.5 Million Grant from NIH | 12 July 2018

Read more via the following link >>>

Catch up on the latest actions and news:

  • Denmark has some recommendations for ME… and they’re pretty awful
  • Pastor Testifies About Wife’s ME
  • What next for the NICE guidelines?
  • Volunteer of the Month: a Scottish Trio
  • Next steps: a letter to our community

Visit the #MEAction website for more information and opt-in for a newsletter >>>

 



 

#ArthritisAwareness  #arthritis

Arthritis Action eNews |  June 2018

Opening to newsletter:

‘We are delighted to have been featured in the Sunday Telegraph’s special inset ‘Arthritis and You’ on 17th June, to coincide with National Rheumatoid Arthritis Week 18-24 June 2018.’

Arthritis Action eNews – June 2018

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

www.arthritisaction.org.uk/

 



 

#WorldHealth #healthnews #diseaseclassification #ICD11

WHO study shows drug could save thousands of women’s lives

WHO study shows drug could save thousands of women’s lives

Including  >>>>

In case you missed it… 
ICD-11: Classifying disease to map how we live and die > explore it in more detail via the link on the newsletter.

www.who.int

 



 

Stanford Looking At TMS to Treat CRPS
unknown source

Learning to Manage Stress While Living with Chronic Pain|  Ellen Lenox Smith | National Pain Report | 12 July 2018

Excerpt:

Remember that rest is key – if you are not sleeping well at night, the next day will feel overwhelming. There are various ways to achieve this, so have that conversation with your doctor to see if you can find an effective remedy for your sleep issues.

Read more via this link  >>>

Read more via the National Pain Report website and opt-in for newsletters >>>

nationalpainreport.com

 



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, including ours which can be found at the end of this newsletter.

Also, due to the excessive amount of newsletters not all will get updated daily!

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

Many thanks



 

Learn About a Potential New OA Treatment | Arthritis Foundation  |  05 July 2018

A group of drugs commonly used to treat osteoporosis may also be beneficial for those with osteoarthritis.

Scientists have found hope that drugs used to treat osteoporosis may be useful in treating not only osteoarthritis pain, but cartilage damage as well.

 


 

#Arthritis  #HealthCareCosts  #Misdiagnosis  #SunProtection

The Arthritis Foundation| Fitness and Nutrition  |  10 July 2018

Headlines >>> 

  • Get Motivated to Move
  • Set a Goal
  • Mind Over Matter
  • Track Your Success
  • Try their Free Tool

Read them all via the following link >>>

Plus many more articles / posts, and more readables, from The Arthritis Foundation follow this link where you can also opt-in for newsletters >>>

www.arthritis.org


Living With Arthritis
Arthritis is painful. It prevents us from leading active, healthy lifestyles. It means we are more likely to develop other serious illnesses. It means we need to fight harder. The Arthritis Foundation is leading this fight by offering simple, yet effective ways to conquer the everyday battles and take control of your condition.



#biopharmanews #pharmanews #pharma

BioPharma Dive’s Top News  | Weekender | 12 July​ 2018

Top headliners:

  • New epilepsy data sets Zogenix up for showdown with GW
  • Dermavant finds ‘cornerstone’ drug in GSK’s pipeline
  • New FDA guidance aimed at advancing gene therapy
  • Enzyvant initiates value-based pricing talks ahead of filing
  • BioCryst nixes merger, sending Idera stock down
  • Dova downgraded as high price tag threatens to slow new drug’s pickup

  • SPONSORED CONTENT BY MEDIDATA
    Rethinking trial protocols to advance patient-centricity

Trial designers seek insight into patient burden to help plan more effective, patient-first trials


 

Read the above and much more via the following link  >>>

 



#health #spoonie #backpain #chronicpain #drugs #fibromyalgia #pain #medication

Top ten healing powers of some common herbs and spices |  BARMAC5  |  BACK PAIN BLOG UK…  |  6 July 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.’


 

Follow the link below to read more  >>>

Top ten healing powers of some common herbs and spices

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

BACK PAIN BLOG UK…



 

#PatientExperience  #professionals 

WHITEPAPER ~ Improving Patient Experience |   | Siemens Healthineers  |  13 June 2018  

Introductory line:

Do measures to improve patient experience increase quality of care, hospital efficiency, and patient loyalty?

Read the report by following this link  >>>


Who are the ‘Siemens Healthineers’?  >>>

Opening paragraph from About Us page:

At Siemens Healthineers, our purpose is to enable healthcare providers to increase value by empowering them on their journey towards expanding precision medicine, transforming care delivery, and improving patient experience, all enabled by digitalizing healthcare.


Visit this link to opt-in and register for newsletters  >>>

Siemens Healthcare GmbH ©2018

 



#Rheumatology resources for #professionals and #patients

 

EULAR websites >>>

EULAR Congress website: www.congress.eular.org

EULAR Congress 2018 documents: www.congress.eular.org/download.cfm

EULAR website: www.eular.org

EMEUNET website: emeunet.eular.org

EULAR Young PARE website: www.youngpare.org


Welcome message from Johannes W. J. Bijlsma for the ‘Annual European Congress of Rheumatology’ who is EULAR President  >>>

Welcome message from the EULAR President


Did you not get to Amsterdam for the ‘Annual European Congress of Rheumatology‘?

Well don’t worry too much there are a few ways that you can keep up to date with what went on.


 

The (EMJ) European Medical Journal will have a full congress review of in their next edition of EMJ which is FREE to subscribe to via this link >>>

In the Meantime…

… you can see all of EMJ’s Rheum content by visiting this link, please share. Please opt-in & help me to get proper peer reviewed articles out there  >>>


PLEASE NOTE:

Copyright © 2018 European Medical Group LTD trading as European Medical Journal. All rights reserved. European Medical Journal is for informational purposes and should not be considered medical advice, diagnosis or treatment recommendations.


 

#healthcareprofessionals #MedicineMatters

Medicine Matters | medwireNews@EULAR2018

Medicine Matters is developed for healthcare professionals as a premier resource for the latest clinical information in medicine.

FREE registration for Medicine Matters ~ Rheumatology, you can opt-in via this link >>>

Rheumatology Matters twitter feed >>> 

 



Sorry for any inconvenience as we go through a bit of website restructuring

My Disability Matters News & Opinion Digest has moved to it’s own space and all attempts will be made to update daily.

Paper.li newsletters have also moved to their own digested post and they update themselves. 

Many thanks

 



#LymeAwarenessUK

Improve NHS testing for Lyme Disease, fund research & revise current treatment protocols

Can you help to bring better awareness of #lymedisease to the UK & sign this #Petition to improve #NHStesting, #research & recieve better funding to help this cause.

NHS Choices say ‘Lyme disease is a bacterial infection that can be spread to humans by infected ticks. It’s usually easier to treat if it’s diagnosed early.’

Read more via the petition link below the butterflies

#LymeAction  #Lymetoo 
Many thanks for reading & helping to raise awareness

🦋💜🦋

Improve NHS testing for Lyme Disease, fund research & revise current treatment protocols.

Petition Via >>>  www.change.org

 



#arthritis #rheumatologists #rheumatology #fellowships #ACR

Arthritis Foundation ~ Champion Connection |June 2018  Newsletter  | 15 June 2018

Opening paragraph:

‘The Arthritis Foundation is actively expanding the number of rheumatologists by naming five universities that will receive fellowship awards. The program is designed to address the growing shortage that the American College of Rheumatology cautions is expected to increase and will lead to worsened disease outcomes, lower quality of life and increased mortality rates.’

Read more via the following link  >>>

Plus many more articles / posts…

For more readables from The Arthritis Foundation follow this link  >>>


Living With Arthritis
Arthritis is painful. It prevents us from leading active, healthy lifestyles. It means we are more likely to develop other serious illnesses. It means we need to fight harder. The Arthritis Foundation is leading this fight by offering simple, yet effective ways to conquer the everyday battles and take control of your condition.



#careactionplan #carersweek2018 #carers #policypaper

Policy paper | Carers action plan 2018 to 2020 |  Published 5 June 2018

The plan sets out how the government will improve support for carers in England over the next 2 years.

www.gov.uk/government/publications/carers-action-plan-2018-to-2020

For all kinds of useful Gov type information and useful links visit their home page  >>>

www.gov.uk/



 

It’s that time of year to recognise your peers, your fellow advocates and patients leaders.

WEGOHealth Awards

Nominations have officially opened. Head on over to the WEGO Health Awards nomination page to recognize your favorite community leaders.

Everyone can be a part of the #WEGOHealthAwards!

Make sure to nominate your favorite Patient Leaders across all condition areas and topics, including

#chronicillness #invisibileillness #fibro #ME #EDS #Lupus #Musculoskeletal #RMD #arthritis #psoriasis #chronicpain #multumorbidities #patients #patientvoice #collaberative #TEAM #PatientLed #PatientEngagement

#patientadvocacy #healthadvocacy #researchadvocacy

#ChronicillnessVOICE  #NotJustPatients

 



#science #cancer #cancerresearch #immunotherapy

#lungcancer #vaping #breastcancer

News digest -scienceblog~Cancer Research UK  |  lung and breast cancer immunotherapy and vaping |  Katie Roberts  |  9 June 2018

Breast cancer immunotherapy first ~ opening lines

A woman’s advanced breast cancer has apparently been eradicated by an experimental therapy made from her own immune cells, reports the Mail Online. The woman remained cancer-free two years after the “highly personalised” therapy, after existing treatments had failed.


You can visit the scienceblog~Cancer Research UK via this link >>> 



#Fibromyalgia  #Research #FibroResearch

Fibromyalgia Research Newsletter  | UK Fibromyalgia |  June 2018

Fibromyalgia Research Newsletter June 2018


The home of the Fibromyalgia Magazine- The independent voice of UK Fibromyalgia.

This newsletter is for informational purposes only and should not be used as a substitute for the medical advice or services of your health care providers.
The advertising of a product, therapy or clinic in this email does not imply that it has been tested or its use endorsed by UK Fibromyalgia.



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 >>>



Newsletters from News-medical | Life Sciences >>>


News Medical | Arthritis Newsletter | 3 April 2018


News Medical |Allergies Newsletter | 15 May 2018 


News Medical |Dermatology Newsletter | 31 May 2018


LATEST!  Newsletters from News Medical |Genetics | 27 June 2018  


LATEST!  News Medical |Neurology / Neuroscience Newsletter | 20 June 2018


LATEST!  News Medical |Pharmacy / Pharmacology Newsletter | Headliner:  People who use medical marijuana have higher rates of prescription drug use, study finds |  22 June 2018

 


New!  News Medical |Psychiatry Newsletter |  7 June 2018  

 


 

Latest!  News Medical  |  Rare Diseases  |  23 May 2018 

 


Latest!  |  News Medical |Rheumatology Newsletter |  Headliner:  Simple changes to diet could help reduce osteoarthritis symptoms|  1 June 2018  

 





Meditation Change over!   

KUNDALINI RISING || 432Hz Music to Balance Male Female Energy || Healing Music for Meditation | June 2018

Meditative Mind  Published on 7 Jun 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

 

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