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.
The message I have for you all today is naturally in connection to #BoneJointWeek and the week long campaign via the Arthritis & Musculoskeletal (MSK) Alliance (ARMA).
You know!, there are over 300 undertermined MSK conditions which is reason enough to campaign for awareness, and progression, within this area of health advocacy. The fact that there are already hundreds of determined conditions on top of that then the scale of MSK within the medical healthcare industry becomes a harsh reality.
It is true, and sad to state, that we cost healthcare systems a vast amount of money no matter where in World we live. Whether it be for the pain medications; persistent medical consultations ~ for life ~; medical devices / support aids; drug delivery systems; Digital Apps for monitoring aspects of our healthcare; treatments and surgeries; emergency care; support care and even journalling tools.
Finding easier and more economical ways of doing all of these things has become a necessity so let’s hope that this week we can all work together to highlight the World of #Arthritis and #MSK and the great need for progression.
Thankyou, and please share #BoneJointWeek and the following from below this week and help ARMA get their messages out there and be noticed.
We begin this with#WorldArthritisDay12th October which is of course TODAY!
~ Carole, ‘born with stripes’ and ‘MSK’ anomolies including the extra ‘RARE’ tailbone that you can read about via this link >
The Sixth Lumbar Vertebrae: The Anatomy Behind the Rare Extra Bone Zawn Villines | Spinal Cord | November 02, 2015
When I was diagnosed with this ‘rare’ anomoly it was at the same time as the ‘spina bifida occulta’ and the GP told me he’d never heard of a case during his career where someone actually had both conditions. This was over 20 years ago and ‘I’, sadly, still don’t know a great deal about either condition.
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 @WeAreARMA and 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.
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.
Are you a #DisabilityGameChanger?
Scope | The fight for equality | 11 October 2018
Being a person with varying debilitating problems I am classed as being disabled. I don’t look particularly disabled and I have the capacity to get on my feet and move around. However, the excessive level of joint hypermobility, dreadful balance and coordination and vertigo make me a bit of a liability when walking around. I use walking stick sometimes one, sometimes two, or I have my electric power chair for getting around town in.
There is never a time when I go out that I don’t come across some form of discouraging and negative incidence, whether it is just a simple sneer from someone when they see me stand up, or climb out of the wheelchair to walk to the Ladies bathroom, to the people who just plain and simply can’t accept that not all people who are disabled are paralysed. I’m not bad-mouthing those who are paralysed because they come under just as much unfairness and scrutiny which is why this campaign by SCOPE is so important.
It is time that we were experiencing better fairness and equality, in fact it is well overdue, yes, naturally I’m biased about that but at least I can acknowledge the problem and stand up and fight for the cause. Not just for myself but for all the FibroFlutter followers and supporters out there who also need this to happen.
Workplaces need to be better equipped, employers need to be educated, but most of all the Government shouldn’t just recognise our issues but start doing something about them.
Please join me and 5000 others, sign up to become a #|DisabilityGameChanger and help SCOPE to fight inequality for the disabled
If you want to talk to others and share your experiencesJOIN their Online Community, which is a friendly space for disabled people, parents and carers to talk to others with similar experiences
Scope is a registered charity number. 208231. Registered as a company limited by guarantee number. 520866 (England & Wales). Registered office: Scope, Here East Press Centre, 14 East Bay Lane, E15 2GW. VAT registration number 805 1569 39
Arthritis Foundation | You Can Make a Difference | 8 October 2019
The Arthritis Community Needs You
You understand how seriously arthritis can affect everyday life. That’s why we need you to speak up, speak out, and make your voice heard!
At the Arthritis Foundation, we are making sure that men, women and children living with arthritis cannot be overlooked or ignored. With the support of people like you, we have helped enact more than 70 new laws that make getting arthritis care easier in nearly all 50 states. But we’re only getting started!
NEWS | GOSH looks to DRIVE healthcare technology forward
AI AND ANALYTICS | Medopad taps Tencent’s AI smarts for speedier Parkinson’s assessment
CLINICAL SOFTWARE | Junior docs clinch $3.9m to expand and grow clinical messaging app
NEWS | ‘Smart’ glasses could help track Parkinson’s symptoms
DIGITAL PATIENT | RCGP chair says GPs are not ‘technophobic dinosaurs’
Features
FEATURE | Outdated procurement processes are stifling NHS innovation
FEATURE | A host of changes: moving a PHR to the managed cloud
Upcoming Webinars >>>
4 Ways South Eastern Health Trust Improves Care Team Communication Making the flow of patient care easier and more efficient for nurses and consultants within Health Trust hospitals is a challenge for Information Technology (IT) leaders across the United Kingdom. Join Mark Kendall to find out how South Eastern Health Trust has become a model for efficient communication within the Health Trust environment.
Turbo-charging programme management across the NHS – why and how
The webinar will provide you with insights into how and why the trust selected and implemented Fortinet. You will also learn how the use of SIEM has helped improve compliancy, driven efficiencies and enabled the trust to better utilise information from their existing technology assets to gain useful and insightful knowledge from their network.
For a full list of Digital Health events and free webinarsclick here.
FibroFlutters supporting eyeforpharma as #PatientAdvocates #PatientVoice
Look out for our report following our jaunt to the eyeforpharma Patient Summit next week 16-17th October to read all about the conferences and our experiences:
It is all getting nerve-wracking and exciting all at the same time now as I prepare everything I need to take to London next week. Even the packing of the suitcase is making me smile, however that could be because I haven’t actually left the NE UK, since going to Barcleona in March!
LOL, no really! I am not that lucky to get away very often because health, or lack of pennies, have their way of causing cancellations and re-scheduling, ask my friends…
Anyhoo! this is one trip that I shan’t be cancelling due to it’s importance in our World of ‘patient’, ‘health’ & ‘research’ advocacy in connection to pharma, and the medical healthcare industries.
Getting your valuable messages out to them is necessary, the things we have all discussed within our #chronicillness communities regarding patient support progarams (PSP’s) and patient-engagement programs within pharma and how they can help to incorporate us as patients into their supply chains in manners that benefit them, but also us as patients. Okay, it may seem a bit raw to say ‘supply-chains’ but in the world of business management and organisational structure that is exactly what it is! I won’t dress it up!!
We as patient’s are aware of this which is why these Patient Summits are so valuable, to both sides. The fact that pharma has softened a little and is beginning to make the changes so that patients are morehumanised within their supply-chains proves that efforts are being made.
Our trip to London will teach us to what extent they are doing this, but also what measures companies are willing to go to in order to win our trust back so that relationship building can begin. What type of relationship? well that will solely depend on the company. I don’t think there can be a universal decision made on that aspect of this due to the many different types of pharma / healthcare companies, it is down to the company as an individual component to assess themselves to find out which routes would suit them best.
Naturally this is only one aspect up for discussion, there are many more, equally as important as this.
Well I can tell you that my Fellow Founding Five Flutter Sonia and I are really looking forward to going, and to also meeting many fellow patient voices / advocates that we only know online, and also to meeting up with those that we met in Barcelona and I can imagine there will not be enough time for us all to tell each other what we’ve been up to because there has been a lot of work going on between us all right across the Globe.
Looking forward to telling you all about it when we get back
Wishing you all wellness ~ Carole
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.
Christine shared anEVENT she is co-hosting with Lupus Foundation of Northern California
Facebook LIVE ~ Lupus101: Essential Oils/Aromatherapy
Does aromatherapy really work?
Join the talk with Doterra Rep, Suzy Martyn, Who will be answering all of your questions about essential oil. Hosted by Christine Von Raesfeld & Lupus Foundation of Northern California
You can access this ‘Public’ Facebook LIVE event via following this link >>>
Event has passed but you can access it if you missed it!
Fellow #patientleader & #healthadvocate #patientadvocate Daniel De Garza shared this awareness poster via the WEGO Health Patient Leader Connection for AIDS awareness day 13th October.
By Pamela Jessen a fellow #advocate #patientvoice. She focuses her writing on #chronicpain #chronicfatigue & invisible illness. In addition to her writing, she #volunteers with the Patient Volunteer Network in British Columbia
Also a member of WEGOHealth Patient Leader Connection
I USE OPIOIDS AND I’M NOT AN ADDICT |Ribbonrx| 9 October 2018
Shared via the Wego Health Patient Leader Connection on |Facebook by Laura Tietz | Website Coordinator, Editor-in-Chief, Contributing Writer at The Unchargeables
The goal of this blog is to give a voice to issues that are near and dear to my heart (meaning, issues I suffer from) that need a louder voice.
ribbonrx discusses their experiences with #opioids & #nonaddiction to highlight the fact that not all opioid users are addicts & it is wrong to discount it as an issue. I agree being an opioid user in the UK who isn’t up against the system in the #US
Read the blog post by ribbonrx via this link to her website >>>
Our Neglect of Chronic Pain Has Left Many Without an Identity |Scott McKinney Ph.D| National Pain Report| 11 October 2018
Opening lines:
Imagine if, as a society, we had the inability to be good parents. The resulting context would be one where a greater need existed for individuals and groups that provided a solution to the problem.
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 | 11 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.
2018-10-10 Summary: Contrary to popular belief, researchers find no significant link between common speech disorders and the use of pacifiers or bottles in small children. Source: University of Sydney. New University of Sydney research shows bottles, dummies, and thumb sucking in the early years of life do not cause or worsen phonological impairment, the most common […]
2018-10-10 A new study reports people may be able to avoid depression, even if they have a genetic predisposition to SAD, by maintaining or boosting serotonin levels throughout the year.
2018-10-11 A new study reports T cells are activated in the intestines and migrate to the brain, causing an inflammatory cascade that may lead to multiple sclerosis. Researchers say the gut microbiome may play a more significant role in the development and progression of MS than previously believed.
2018-10-11 Researchers have made a surprise discovery that could help provide treatment options for a range of conditions from Parkinson’s disease to depression. Researching how to transform supportive brain cells into neurons, the scientists unexpectedly transformed mature inhibitory striatal neurons into dopamine producing neurons.
“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!
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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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