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.
Your weekly roundup of STAT’s First Opinion | STAT: First Opinion | 7 October 2018
First Opinion authors started October with a bang, writing about gender and cancer treatment, Memorial Sloan Kettering’s woes, treating teens who have been sexually assaulted, and much more.
Read on! If you have an idea for First Opinion, please send it to Patrick Skerrett atfirst.opinion@statnews.com
Male doctors said my ‘female’ cancer was incurable. Then a woman took command and gave me hope By DOREEN CARVAJAL
Memorial Sloan Kettering, you’ve betrayed my trust By STEVEN PETROW
As a pediatrician, I work with sexually assaulted teens. They deserve full investigations By NINA AGRAWAL
More research on ‘dying healthy’ will also help us live healthier By GEORGE J. ANNAS AND SANDRO GALEA
We mustn’t let the Mental Health Parity and Addiction Equity Act languish By PATRICK J. KENNEDY AND BENJAMIN F. MILLER
SPONSOR CONTENT BY GLOBEDOCS
GlobeDocs invites you to join them for their 2018 Film Festival
Keeping the Nobel Prizes relevant By JEFFREY S. FLIER
Precision medicine needs a business mindset in order to flourish By RICHARD G. HAMERMESH AND KATHY E. GIUSTI
Bringing order to the ‘wild frontier’ of microbiome medicine By BERNAT OLLE
Welcome to the Samaritans Monthly Newsletter | Samaritans | 5 October 2018
World Mental Health Day |Wednesday 10 October
let’s try to remember to campaign for better mental healthcare the best ways that we can ~ Carole aka fibrofly73
Creating better listeners at work To coincide with World Mental Health Day, we’re highlighting our Wellbeing in the City e-learning tool >>>Sign up for Wellbeing in the City
Take part in our Christmas Raffle! |Samaritans Christmas Raffle 2018 is now open
Read all the above via this link to their newsletter, please opt-in to recieve it if you like what you read >>>
Brew Monday 2019 is coming so get ready to make it bigger and better than ever before!
Get together with your friends, family or workmates on Monday 21 January, have a cuppa, raise vital funds for Samaritans and beat the January blues.
You’ll be able tosign up for afree fundraising packfrom October 15th – so keep an eye on Twitter for more information. Keep up to date by following us on Twitter >>>
InWhy CX Starts In Sales, we break down what customer experience actually means and why the sales rep is best positioned to deliver on this definition.
In other news:
A Career-Defining Diagnosis, we are excited to share with you the first article in our new Patients In Pharma series. Each article will provide a window into the world of patients that are working within pharma.
InWhen Patients Take Control, Our chairman Paul Simms gives us the lowdown on the patient projects he is spearheading and the motivations behind them.
Adam says – If this piqued your interest, tell your friends to sign up here.
Focussing on the patient voice and understanding what outcomes mean to their patients were key for the collaboration between Allergan, SonarMD and Illinois Gastroenterology Group (IGG). Their project ‘IBS-D Patient Engagement Platform’, was the winner of the eyeforpharma 2018 North American Most Valuable Collaboration.
The video below contains the story of their innovative mobile platform, that resulted in improved lives of their IBS-D patients >>>
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.
Your weekly update from EDS UK! | The Ehlers-Danlos Support UK| 5 October 2018
Headlines in this issue >>>
Have you completed the BLF survey?
EDS UK secured four years of funding from the National Lottery through the Big Lottery Fund, to help us support those touched by EDS. Twice a year we are required to provide feedback to the BLF on how their funding is helping us meet our objectives.
The survey should take you no longer than eight minutes to completehere.Thank you as always.
Join the global EDS Registry which endeavours to >>>
Map the experiences of those living with Ehlers-Danlos syndromes (EDS) and related disorders globally
Facilitate research into the frequency of comorbid conditions associated with the various types of EDS and HSD.
Enable the gene search for hypermobile EDS and hypermobility spectrum disorders
Discover new forms of EDS/HSD and ascertain the relationships between EDS/HSD and chronic pain, anxiety, and other problems such as neurological, mast cell, gastrointestinal, autonomic disorders
BBC Inside Out ‘Vascular EDS and me’
Vascular Ehlers-Danlos syndrome has been featured in the news on BBC One’s Inside Out and is now available to watch on iPlayer.
Watch from 11 mins 17 secs to view the story of 25-year old Caroline Prentice living positively with vascular EDS despite losing her sister and two brothers to vEDS.
BBC Sport features Anoushé Husain
“Really chuffed to see my video on the front page of BBC get inspired! Raising awareness of the benefits of activity is really important to me.” ~ Anoushé Husain
WEBINAR Getting the most for your child – working with schools and professionals
Author of Ezra’s Extraordinary Stripes, educational and child psychologist Dr. Louise Lightfoot is doing a free webinar for EDS UK members on how to get the most for your child from schools and professionals.
Register for the webinar which will be held on Tuesday October 23rd at 1pm via the newsletter link below
Help with FUNDRAISING – Don’t forget to use Give As You Live this Halloween!
World Poetry Day | Poem by Christina Moore
Your stories and much more via this following link >>>
The Ehlers-Danlos Support UK is a Charity registered in England and Wales (1157027) and Scotland (SC046712. Registered Company No. 8924646. Registered Address: Devonshire House, Manor Way, Borehamwood, Hertfordshire WD6 1QQ
#TrigeminalNeuralgia
Trigeminal Neuralgia – Why Awareness Is So Important |Elizabeth Sirrell| National Pain Report| 7 October 2018
Opening lines:
Trigeminal neuralgia, is an excruciatingly painful condition affecting the nerves on the face. The pain, most often on one side of the face, can be like an electric shock, like a bolt of lightning, or it can be stabbing, burning or aching.
Heart Matters | Fancy cauliflower cheese for dinner tonight?| 6 October 2018
Information, inspiration and support for a heart-healthy lifestyle
Watch: What’s it like to live with dementia
Wayne was just 59 when he was diagnosed with vascular dementia and Alzheimer’s. Watch him tell his story in our moving short film and learn how these conditions are connected to heart and circulatory diseases.
The right diet can keep your brain healthy as well as looking after your heart. We’ve got the facts on how to do that – and it’s not as bad as you might think.
Could statins cause sleep problems?
Our expert answers a question about whether statins could cause sleep problems.
Popular in the last 7 days >>>
1. Quiz: How much do you know about salt?
2. Are butter, cheese and whole milk really good for you?
3. Watch: Could fat in your bloodstream cause blood clots?
4. 6 tips for getting fit after 50
5. How ticks are helping to cure heart disease
How tai chi could benefit you
Tai chi can offer benefits to people of all fitness levels, and could improve your mental as well as physical health. Find out how tai chi has helped Trevor through his heart problems.
Find something amazing at our Furniture & Electrical stores
Have you visited your localBHF Furniture & Electrical storelately? You’ll find amazing preloved items for your home. You can find inspiration to upcycle your chosen piece on our#BoughtatBHFphotowall.
Tell us what you think of Heart Matters
You could win a £50 John Lewis or Marks & Spencer voucher by telling us what you like about Heart Matters, and what you’d like to see more of in the magazine. Help us improve and you could be a winner!
(Start the survey via the newsletter link below)
Recipe of the week: Cauliflower cheese
With a chill in the air, it’s time for some warming comfort food. Cauliflower cheese is a family favourite – and with a few tweaks, it can be healthy and delicious too.
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 ManchesterLizzie 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
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 | 7 October 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.
2018-10-07 Researchers report diet and weight may hinder the response to medications for some with bipolar disorder. The study found those who had a better quality of diet and lower BMI responded better to treatments than those who were overweight and ate foods that promoted inflammation.
“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.
![FMAUK SUPPORT GROUP LOGO WorkingWith-200_100[1]](https://i0.wp.com/fibroflutters.com/wp-content/uploads/2015/09/fmauk-support-group-logo-workingwith-200_1001.jpg?resize=274%2C137&ssl=1){kind=logo}
