It doesn’t matter where you live in the World when you are given your fibromyalgia diagnosis, one of the first things you want to know is where to get information that you can rely on.
Our site is currently old and sporting some posts that need attention. We need to get rid of dead links and update everything. Redevelopment and rebranding is essential to us moving forwards.
Categories
#Innovation chronic illness conference Disability Drug development EVENTS FibroFlutters Health and medical Healthcare Industry & business matters medical Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Professionals Rare Disease Advocacy Research
My experience – First face-to-face event in 2 years!
This week I was lucky enough to attend the ‘Patient Centricity and Collaboration Global Congress 2021, Europe, that was held in London on 8-9th November. By Paradigm Global Events, that was held in London on 8-9th November. The last time I attended such an event in person was in October 2019, in London. In this article I discuss it, my experience and share the messages that I took with me.
Patient Engagement Day with Prime Patient – Did you miss it?
UPDATED to include an article by Olivia Kersey, Patient Strategist, at PEP Talks, which outlines the highlights of the very first annual Patient Engagement Day.
Taryn is delivering the Ataxia UKs medical guidelines to her GP in Sunderland for the campaign. Educating doctors is important to help this rare condition, ataxia, get recognised. Knowing about the disease can help people with symptoms to get noticed sooner… and diagnosed quicker.
The PFMD network is making sure to aggregate existing knowledge and tools, identifying good practices and coherently combining them before designing accessible and useful avenues for the various audiences that will use them.
Starting on September 28 and 29, AIMed will go live with a weekly series of high quality content. Shorter, more focused sessions available to view for free live or on-demand.
Categories
Academics Awareness campaigns, events, blogs, petitions & posters Biomedical scientists Biotechnology Cell & Microbiology Child health clinicians conference Diagnosticians Drug development EVENTS Geneticists Health and medical Health Care Providers Healthcare Lab Technicians Media Partners medical Medical news stories, blogs and research Medical specialists / consultants Medical technologists Mens health Patient Advocacy patient centricity Patient Engagement Patients Pharma Pharma / Science / Tech / Digital / AI Precision Medicine Professionals Researchers
Precision Medicine Forum PATIENT WEEK – Change of date.
Precision Medicine Forum – Patient Week convenes healthcare professionals, researchers, industry, payers and patients/patient advocates in a unique setting which puts the patient front and centre of the discussions. This time around there will be panels sessions, roundtables, 1-2-1 networking and group networking sessions.
Categories
Care givers Child health chronic illness Drug development FibroFlutters Health and medical Healthcare Join the Community medical Medical Conditions / Disorders Medical news stories, blogs and research Partnerships Patient Advocacy Patient Engagement Patients Product Reviews Rare Rare Disease Advocacy Research Survey Therapies and Treatments Twitter Feed
Voice your opinions to improve medical products and services
Get paid to Voice your opinions. Help companies develop better products and services to help provide better healthcare for patients. Create better patient outcomes!
Categories
#Innovation Awareness campaigns, events, blogs, petitions & posters Care givers Drug development EVENTS Health and medical Healthcare Industry & business matters Media Partners medical Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy patient centricity Patient Engagement Patients pharma Professionals Rare Rare Disease Advocacy rare genetic disorder Researchers Scientists Supporters / Ambassadors Twitter Feed
RARE Summit 21 – it’s more than an event – it’s where the magic happens!
RAREsummit is more than an event – it’s where the magic happens. A powerful movement for change that provides the right ingredients and ecosystem for a better future, where productive collaborations are nurtured and flourish for real patient impact.
Unfortunately, there is no one-size fits all solution to the management of fibromyalgia.
Categories
Ataxia Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Charities chronic illness Health and medical Healthcare Medical Conditions / Disorders Medical news stories, blogs and research Neurology Patient Advocacy Patients Rare Rare Disease Advocacy rare genetic disorder Supporters / Ambassadors Twitter Feed
International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
The word ‘ataxia’ comes from the Greek ‘a taxis’, which means ‘without order’.
Our mission is to bring back some of the order to the lack of order
It is the term used for a group of neurodegenerative diseases that affect balance and coordination.
Great opportunity to get together with other guys that have rare diseases and mental health issues.
Meet in a safe space, talk about what you are going through and offer support to each other if and where needed.
Categories
About Us - FibroFlutters AI in medicine anxiety Articles Biotechnology Blogs / Bloggers Cell & Microbiology chronic illness chronic pain Deep learning Dementia / Alzheimers Diabetes Digital Health Disability Drug development Educational EVENTS events Gastro / Gut / Bowel Global resources Health and medical Healthcare Heart Health inflammatory Info site invisible illness Machine learning Media Partners medical Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research mental health NCCIH Neuroscience Newsletters/Papers/Magazines/Blogs NIH ( The National Institutes of Health ) US Pain management Patient Advocacy Patient Engagement Patients pharma Pharma / Science / Tech / Digital / AI Precision Medicine Product Reviews Professionals public health Rare Rare Disease Advocacy rare genetic disorder Research Twitter Feed
#chronicillnessVOICE Aug 17 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
Constant pain means you need a program or protocol to treat your basic injury or disease. One that reduces electric impulses and helps rebuild the damage to the NTRS in your spinal cord and brain. Symptomatic pain relievers are usually a must, but they don’t treat or reverse your basic problem.
Have you entered yet for The Responsible Business Awards by Reuters Events? There is less than 1 week to go until the deadline on 30th July
Using my rollator with its seat for those appropriately paced stops we hope to get out of the back lane this time. Last year the pandemic put restrictions on how I could complete the challenge.
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
Categories
AI in medicine clinicians Deep learning EVENTS Health and medical Machine learning medical Medical Conditions / Disorders Medical news stories, blogs and research Medical specialists / consultants Medical technologists Pharma / Science / Tech / Digital / AI Professionals Radiology Sites to visit Supporters / Ambassadors Webinar
AI in radiology – AI-enabled opportunistic screening in medical imaging
Join this exclusive webinar – Discussing the impact of AI-enabled opportunistic screening in medical imaging and how this can positively impact on population health at scale.
“CRDN collaborated with Medics 4 Rare Diseases and Rare Revolution Magazine to bring together a cross sector group of experts and advocates newly named ARDEnt (Action for Rare Disease Empowerment) to produce a report called “Future Proofing Rare Disease Care, Research, and Treatment.”
Categories
AI in medicine Alternative / Complementary Therapies & Treatments Arthritis Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers chronic illness EDS news and info EVENTS Fibro MeCFS online NEWS & INFO sources FibroFlutters Fibromyalgia Health and medical Health Care Providers Hypermobility Spectrum Disorders invisible illness MAY 12TH medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Medical specialists / consultants Medical technologists Neuroscience Newsletters Newsletters/Papers/Magazines/Blogs Parkinsons Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI public health Rare Disease Advocacy rare genetic disorder Reproductive Health Research Researchers Scientists Slideshows
#chronicillnessVOICE May 11 health, medical, pharma and research news
#chronicillnessVOICE May 11 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 11: Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes. #chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth […]
Categories
Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers Care givers chronic illness Drug development EDS EVENTS Fibromyalgia Health and medical medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Neuroscience Newsletters Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI Professionals public health Rare Disease Advocacy Research
#chronicillnessVOICE May 7 health, medical, pharma and research news
#chronicillnessVOICE May 7 – health, patients, medical, research, pharma related news for everyone #notjustpatients #chronicillnessVOICE May 7: Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes. #chronicillnessVOICE #notjustpatients #chronicillness #patients #health #research #pharma #science #AI #digitalhealth […]
Categories
About FibroFlutters
Read this to learn about FibroFlutters, who we are today. A Patient Advocacy Organisation & online social media communications network for everyone #notjustpatients
Categories
AI in medicine Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers chronic illness Digital Health Disability Drug development Educational EVENTS Fibro MeCFS online NEWS & INFO sources Global resources Health and medical Health Care Providers Healthcare Industry & business matters Info site Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research Medical specialists / consultants Newsletters Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients Pharma / Science / Tech / Digital / AI Professionals public health Rare Rare Disease Advocacy Research Researchers Scientists Slideshows Therapies and Treatments Webinar
#chronicillnessVOICE April 26 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
Categories
AI in medicine Alternative / Complementary Therapies & Treatments Articles Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers Care givers chronic illness Deep learning Digital Health Disability Drug development EVENTS Fibro MeCFS online NEWS & INFO sources FibroFlutters genetics Global resources Health and medical Healthcare Industry & business matters Info site Machine learning medical Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research Neuroscience Newsletters Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI Professionals public health Rare Rare Disease Advocacy rare genetic disorder Research Researchers Scientists Webinar
#chronicillnessVOICE April 20 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
Categories
Articles Awareness campaigns, events, blogs, petitions & posters chronic illness EVENTS Health and medical Media Medical Conditions / Disorders Medical news stories, blogs and research Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients Pharma / Science / Tech / Digital / AI Professionals Rare Disease Advocacy Sites to visit
#chronicillnessVOICE April 19 health, medical, pharma and research news
Bringing a varied selection of health news, medical news, pharma news, research news to you in relation to many aspects within the healthcare, medical healthcare & pharmaceutical landscapes.
Raising awareness of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders
Categories
Alternative / Complementary Therapies & Treatments Care givers chronic illness chronic pain Disability EDS Fibro MeCFS online NEWS & INFO sources Fibromyalgia Health and medical Healthcare invisible illness Media medical Medical Conditions / Disorders Medical news stories, blogs and research mental health Newsletters Newsletters/Papers/Magazines/Blogs Pharma / Science / Tech / Digital / AI Professionals
Health, Medical, Research, Patient and Pharma related newsletters
These newsletters update themselves so please remember to check in, and / or remember to opt-in for the newsletters via the links provided.
Categories
Awareness campaigns, events, blogs, petitions & posters Back Pain back pain chronic illness chronic pain Disability Educational Fibro MeCFS online NEWS & INFO sources Fibromyalgia Health Care Providers health ergonomics Healthcare Medical Conditions / Disorders Musculoskeletal Pain management Patients physiotherapy Professionals Therapies and Treatments Twitter Feed Workplace and health
Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist
To mark national Back Care Awareness Week (October 5-9), Nichola, a Technical Member of The Chartered Institute of Ergonomics and Human Factors, has compiled her ‘Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers’.
International Ataxia Awareness Day (IAAD) is on September 25 of each year. It is a coordinated effort from individuals and Ataxia organisations around the world to help shed light on this rare disease. #IAAD
Categories
Awareness campaigns, events, blogs, petitions & posters Care givers Charities Child health chronic illness EVENTS Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Patient Advocacy Patients Rare rare genetic disorder Sites to visit Support Group Webinar Youth matters
Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
Wolfram Syndrome is a rare genetic disorder which is also known as DIDMOAD syndrome after its four most common features: Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy and Deafness
Categories listing – Pharma / Science / Tech / Digital / AI
After having constant dislocations in my knee where the PVNS tumour was removed from 6 years years previously had caused major damage. This was worsened with my hEDS which effects all of my joints.
Categories
Arthritis Charities chronic illness chronic pain Chronic Widespread Pain Definitions Of Fibromyalgia Diagnosis Dilemmas Educational Fibro - What's that? Find out here! Fibro MeCFS online NEWS & INFO sources Fibromyalgia Global resources Health Care Providers Healthcare Info site invisible illness Join the Community Medical Conditions / Disorders Musculoskeletal NHS Patients Professionals Simply Symptoms Sites to visit The hints and tips station
Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
Chronic Pain management can be a really difficult thing to master, please don’t give up as it can take time, perseverance and a lot of positive attitude until you find your balance with it.
Categories
Arthritis Articles back pain Biomechanics chronic illness chronic pain Digital Health Educational Fibromyalgia Health Care Providers health ergonomics Healthcare Media Medical Conditions / Disorders Medical news stories, blogs and research migraines Miscellaneous & Other Musculoskeletal Pain management Patients physiotherapy Professionals Rheumatology Scoliosis Slideshows Therapies and Treatments Workplace and health
Exclusive Interview: Health Ergonomics – Health Professional explains what it is and then talks about how #covid19 pivoted her into tele-consulting.
Do you have back problems? Arthritis or Fibromyalgia, other problems with joint pain and stiffness?? Then how you are sitting at your desk in the office could be making it worse, whether you work at home or in a company environment. Read on to find out why, and how! This article comes as the result […]
Categories
cancer chronic illness chronic pain Chronic SoMe platforms Educational Endocrinology Food, drink and recipes Gastro / Gut / Bowel Heart Health inflammatory Info site Join the Community Medical Conditions / Disorders Medical news stories, blogs and research Musculoskeletal Neuroendocrine Newsletters Patients Professionals public health
Sweet potato and spinach chilli recipe | Patient
A flavoursome creamy chilli that is not too hot and which the whole family will love
Categories
Academics AI in medicine Alternative / Complementary Therapies & Treatments Arthritis Articles Autoimmune Blogs / Bloggers Brain inury Care givers Central Sensitivity Syndromes chronic illness chronic pain Chronic Widespread Pain Collagen disorder Dementia / Alzheimers Diabetes Digital Health Disability Drug development EDS EDS news and info Educational Endocrinology EVENTS Fibro MeCFS online NEWS & INFO sources FibroFlutters Fibromyalgia Food, drink and recipes Gastro / Gut / Bowel Health Care Providers Healthcare Heart Health Hobbies Homecare inflammatory invisible illness LUPUS Lyme Disease MCAD ME CFS Media Medical Conditions / Disorders Medical news stories Medical news stories, blogs and research mental health migraines mindfulness Musculoskeletal Newsletters Newsletters/Papers/Magazines/Blogs Patient Advocacy Patients pharma Pharma / Science / Tech / Digital / AI Professionals Psoriasis public health Rare Reproductive Health Research Researchers Respiratory Rheumatoid arthritis Rheumatology Scientists Sites to visit Skin conditions The hints and tips station Therapies and Treatments
My favourite Health Medical Research Patient & Pharma related Paper.Li newsletters for everyone #notjustpatients | Self-Updating
Bringing a varied selection of #healthnews #medicalnews #pharmanews #researchnews to you in relation to many aspects within the #healthcare #medicalhealthcare & #pharmaceutical landscapes.
Categories
Alternative / Complementary Therapies & Treatments Articles Cannabis / THC / Marijuana chronic illness chronic pain Chronic Widespread Pain EDS Fibromyalgia Gastro / Gut / Bowel HYPERMOBILITY inflammatory Musculoskeletal Pain management Patients Pharma / Science / Tech / Digital / AI Product Reviews Psoriasis Therapies and Treatments
Cannacares CBD gel capsules Product Review – (sponsored)
It was easy to notice the fact my mobility wasn’t as stiff; pain was lesser than usual, and I wasn’t getting numbness with pins and needles as much in my hands and feet.
healtheo360 is a community where patients can connect with one another for support, inspiration, and motivation.
Categories
AI in medicine Articles Autism Biochemistry cancer Child health chronic illness Dementia / Alzheimers Diabetes Educational Endocrinology genetics genomics Healthcare Heart Health inflammatory Info site invisible illness Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research Multiple Sclerosis (MS) Musculoskeletal Neurology Neuroscience Newsletters Newsletters/Papers/Magazines/Blogs Parkinsons Pdf Download Available Pharma / Science / Tech / Digital / AI Professionals Rare Research Respiratory Rheumatology Skin conditions sleep disorder Twitter Feed
Freshly updated Selected Newsletters from News Medical
Please note that medical information found on this website is designed to support, not to replace the relationship between patient and physician/doctor and the medical advice they may provide.
Whether you are curious about essential oils, skeptical about essential oils, or frequently use essential oils, this is the perfect guide to help you get started and teach you about the basics.
Categories
#Innovation AI in medicine Awareness campaigns, events, blogs, petitions & posters big data Biochemistry Care givers chronic illness conference data privacy data silos Deep learning Digital Health Drug development EVENTS eyeforpharma FibroFlutters Health Care Providers Healthcare Lab Technicians Machine learning Media Medical Device Medical technologists Patient Advocacy patient centricity Patient Engagement Patients Patients included Pdf Download Available pharma Pharma Pharma / Science / Tech / Digital / AI Professionals public health Researchers Scientists Support Group Youth matters
‘What Patients Want’ Executive Round table Summary – eyeforpharma Patient Summit October 2019
This EXCLUSIVE PAPER ‘What Patients Want’ discusses the roundtables / interactive sessions that were designed + led by patients, co-chaired by patients, and moderated by industry facilitators ie patient advocates.
Categories
Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Child health chronic illness Collagen disorder EDS events FibroFlutters genetics HYPERMOBILITY Hypermobility Spectrum Disorders JHS Media Medical Conditions / Disorders Medical news stories Newsletters/Papers/Magazines/Blogs Patient Advocacy pharma Pharma / Science / Tech / Digital / AI Professionals Rare
Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
Not everyone with EDS has hypermobility, and not everyone with hypermobility has EDS!
‘…The Dario LC Blood Glucose Management System features a lancing device, glucose meter, smartphone app, and Bluetooth connectivity to allow you to easily analyze readings, spot trends, and share results.’
Check out these resources provided to us by Dana Brown from healthconditions.info who kindly helped me to add new listings for our readers looking for information and articles related to Diabetes. A kind offering, and hopefully a great new resource relationship! Here is what she recommends: Resources to Empower Our Loved Ones Living with Diabetes […]
Categories
Academics AI in medicine Articles Autoimmune Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Biomedical scientists Bursitis Care givers Charities Child health chronic illness chronic pain clinical trials Collagen disorder conference Deep learning Diagnosticians Digital Health Disability Drug development EDS EVENTS eyeforpharma FibroFlutters Fibromyalgia FMAUK Gastro / Gut / Bowel genetics genomics Health Care Providers Healthcare HOME HSDs HYPERMOBILITY Hypermobility Spectrum Disorders im-patient inflammatory Info site invisible illness Irritable Bowel Syndrome (IBS) JHS Machine learning MAY 12TH ME CFS Medical Conditions / Disorders Medical technologists mental health Musculoskeletal Neuroscience NHS NIHR NIHR Clinical Research Network Patient & Public Involvement & Engagement Patient Research Ambassador Initiative Patient Advocacy patient centricity Patient Engagement Patients Patients included pharma Pharma / Science / Tech / Digital / AI Product Reviews Professionals public health Rare Research Researchers Support Group WEGO HEALTH Youth matters
Reflecting back! My year of patient, health, research and pharma advocacy 2019 | Carole Scrafton
In all honesty I am amazed that I have done all this especially considering my health was quite bad last year. I do tend to distract myself as much as possible, but crikey, I got around quite a bit didn’t I. – closing thoughts
Categories
Articles Bursitis chronic illness chronic pain Educational Healthcare inflammatory Media Medical Conditions / Disorders Medical news stories, blogs and research Musculoskeletal Newsletters/Papers/Magazines/Blogs NHS Pain management Patients Pdf Download Available Professionals Rheumatology Sites to visit
Bursitis and Osteoarthritis Similarities and Differences | News Medical | By Tim Boughton, M.Sc.
Knowing the differences between conditions that share so many symptom similarities makes it easier to understand the condition that you have, and also means you can work with your health care providers to create the most suitable management plan for you to cope living with it.
10 Amazing Health Benefits Of Green Tea | DIY Health Remedy. DIY Health Remedy Home page For those of you who know me, you know that I love my green tea. When we have debilitating illnesses like Fibromyalgia that means we are not as mobile as before, things like Green tea can be a useful […]
Real-World Evidence 2022: Rare Diseases and Innovative Therapies will unite healthcare stakeholders to discuss and advance agile strategies for accelerating collaboration and patient focus in a post-COVID Europe.
Do you have Irritable Bowel Syndrome (IBS)? Irritable Bowel Syndrome can be quite debilitating and many members of FibroFlutters have been diagnosed with it. To help people understand the condition better, and raise awareness, I share this video and information leaflet. The intense pain leaves me pacing and then writhing, and pacing and writhing…. … […]