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.
Tincture Takeaways a new addition to my newsletter subscription list regarding #pharma #health #medicalhealthcare #medicine news, it is always good to try and get a nice varied selection of news sources because then you don’t just report the same opinions from the same sources all the time. They are based on medium.com/
Remember if you like the way they report their pharma news to opt-in for the newsletter.
Tincture Truth seeking in health and medicine. Simple, Clean, Curation. Real Ideas. Reverent to Humanity ~ Irreverent to Status Quo.
ARMA Newletter | Arthritis & Musculoskeletal Alliance |October 2018
Harnessing a collective focus to transform MSK services
In this issue
CEO update
Harnessing a collective focus to transform MSK services
“MSK – Not a challenge anyone can solve alone”
Excerpt:
“ARMA is all about collaboration, seeing the value of working together, the power of combining the perspectives of patients alongside a range of professionals. We hope that the NHS ten-year plan will also recognise both MSK, and the importance of a multidisciplinary pathway approach to supporting people with MSK conditions.”
Restrictions on access to care – the impact of waiting for surgery
Guest blogby Justine Clarke, Chief Operating Officer, British Orthopaedic Association
We need you to support ARMA during Bone and Joint Week 2018
12-20 October 2018
12-20 October is a time of important collective campaign activity for ARMA members, with Bone and Joint Week.
The theme of campaign is:
“Musculoskeletal conditions: The elephant in the room?”
During #BoneJointWeek ARMA will be releasing a variety of infographics shariing important messages which the professionals within ARMA’s policy and Communications team have designed and created.
They ask us to share / retweet from @WeAreARMAand to also keep our eyes peeled for vlogs from the event too
When retweeing or sharing on other social media channels can you please use the following hashtag#BoneJointWeek
12-20 October – Bone and Joint Week:
12 October: World Arthritis Day
16 October: World Spine Day
19 October: World Paediatric Bone & Joint Day
20 October: World Osteoporosis Day
Bone and Joint Week 2018 is part of an international campaign to improve musculoskeletal health.
Webinar – Commissioning for Quality:
Community-based Rheumatology Service | 19 October 2018 – 12.30 – 1.30
Who should attend? Commissioners, GPs, clinicians working in rheumatology services.
Presenter: Erica Gould, Nurse Consultant at Community Rheumatology Service Modality Partnership
Webinar – The British Society for Rheumatology’sChoosing Wisely UK Recommendations 1 November 2018 12.30 – 1.30
Who should join? Everyone interested in optimising care for people with musculoskeletal problems, including patients, carers, clinicians from primary and secondary care, allied health professionals and commissioners.
Presenters:Charlotte Sharp, Rheumatology Specialist Trainee, HEE(NW) and Clinical Academic Fellow, NIHR Collaboration for Leadership in Applied Health Research and Care Greater Manchester
Lizzie MacPhie, Consultant Rheumatologist, Lancashire Care NHS Foundation Trust, and Chair of the British Society for Rheumatology’s Standards, Audit and Guidelines Working Group.
Public Health England – Case study and report on lessons learnt A report by Public Health England has been published in the World Health Organization’s European journal, Public Health Panorama.
“Developing partnerships and a whole-system approach for the prevention of musculoskeletal conditions in England”
And much more!…
MSK services survey – Please let us know what is happening locally
As part of their Clinical Networks Project, ARMA wants to find out what is happening to improve MSK services across England in order to see how we can best target their support for improvements.
Link to the newsletter where there are lots of things to read in this issue! >>>
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.
New research from Pain Concern on easing pain appointments | Pain Concern | October 2018
Helping focus pain appointments with the Navigator Tool
This edition has been funded by funded by the Health and Social Care Alliance and Edinburgh and Lothians Health Foundation
Adam Wilson | Broadcast Assistant | Pain Concern said in his correspondence –
“In 2015 Pain Concern released its report ‘Breaking barriers to self-management of chronic pain in primary care’, marking the end of the first part of its ‘Breaking Barriers’ project. Its aim was to highlight the commonly occurring barriers that patients faced during one-to-one appointments with healthcare professionals, and to advance the primary care management of chronic pain.
Phase two of the project was to produce a ‘navigator tool’ to break down those barriers and prepare patients and GPs in order make the most out of their appointments. Phase two is now complete, and in this edition of Airing Pain, Paul Evans speaks to the researchers, patients, and healthcare professionals that allowed this project to happen.”
The Navigator Tool is free to download from Pain Concern’s website along with the study, the report, FAQs, and a wealth of resources from experts into managing long term pain. Just visitpainconcern.org.uk/easing-pain-appointments/
Contributors:
– Dr John Hardman – GP, Navigator Tool study participant – Professor Blair Smith – Scottish Government Lead Clinician for Chronic Pain, Professor of Population Heath Science, University of Dundee – Dr Louise Bailey – GP, Navigator Tool study participant – Renee Blomkvist – Pain Concern researcher for the Navigator Tool – Lucy Murphy – Patient, Navigator Tool study participant
Pain Concern 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
MSWorld, Inc. | Latest from MSWorld, News, Events & More! | 1 October 2018
Including >>>
MSWORLD TALKS | Bowel Dysfunction in MS: Strategies for Success
Dr. David J. Levinthal, MD, PhD from the University of Pittsburgh Medical Center discusses Bowel Dysfunction in Multiple Sclerosis.
Often a difficult subject to address, Dr. Levinthal shares many Strategies for Success!
MEMBERS OF THE WEEK
Sarah Hart | Sarah has submitted her Wonderful Painting titled: Gentle Giant
Bev Sorely | Bev has submitted her Beautiful painting titled: Cheyanne
MSWorld’s 22nd Anniversary Celebration! | 1996-2018 Inspiring Others While Living with MS!
Share your storyto be featured in MSWorld’s upcoming “Living an Inspired Life with MS” initiative!
Information published online by MSWorld volunteers is not intended to be used toward the diagnosis or treatment of any medical condition. For specific information and advice, consult your personal physician.
– MSWorld Management
Our mailing address is: MSWorld, Inc.
PO Box 2643
Sarasota, FL 34230-2643
“At Mayo, we believe individuals have the right and responsibility to advocate for their own health, and it’s our responsibility to help them use social networking tools to get the best information, and connect with providers as well as one another.”
A diverse group of stakeholders launch a patient-centered initiative that aims to overcome the stigma and other factors hampering care. Image credit: aomvector/123RF Stock Photo.
Headliner: Coming Together to Put Patients First in Headache Treatment | By Stephani Sutherland
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.
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.
Registered number: 10004395 Registered office: Rawdon House, Green Lane, Yeadon, Leeds LS19 7BY. Patient is a UK registered trade mark.
#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.
The International Standard Serial Number for Disability News Service is: ISSN 2398-8924
#Neuroscience #neurology #neuroscience
Neuroscience Newsletter | 27 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.
2018-09-26 Using EEG, researchers have identified smaller spikes in the P3 brain wave is associated with aggressive behavior in young children. The findings could help to diagnose toddlers with aggressive tendencies before their behaviors become ingrained, researchers say.
2018-09-26 Researchers have identified a common denominator for ‘dark’ personality traits they have dubbed the D-factor. D-factor, researchers report, can be defined as the general tendency to maximize personal goals and interests over those of another, often to the extent of taking pleasure in hurting others.
2018-09-26 Researchers report the brain controls speech production in a similar manner to how it controls the production of arm and hand movements. The findings could help to build better speech decoders for BMI, helping those who are unable to speak to find their voice.
2018-09-26 A new study reports under conditions of stress, KCNB1 builds up in the brain, before becoming toxic and promoting the production of amyloid beta. In Alzheimer’s patients, the KCNB1 levels are higher than in those without the condition.
2018-09-27 Researchers have developed a new mathematical model, which incorporates EEG data and evolutionary game theory, that bridges the gap between waves and random fluctuations in the brain.
2018-09-27 A new study reports women who are in their third trimester of pregnancy during months with less day light are at an increased risk of developing postnatal depression.
2018-09-27 Researchers say limiting children’s access to screen time to two hours a day, in addition to physical activity and quality sleep, helps to improve cognitive development.
“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.
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
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
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.
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 >>>
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
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.
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.
Awareness Campaigns
Got a campaign you’d like to share, drop me an e-mail, Carole at fibroflutters@gmail.com
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?!
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 – 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.
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