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Hello and thank you for visiting our website, FibroFlutters is a 'Patient-Led' Non-profit Community based Patient organisation that is ran by 'unpaid' Patient Volunteers. * We raise awareness, share health communications to educate people about varying chronic illnesses. * Provide resources for patients & professionals alike. * We strive to be patient / health /research /pharma advocates to help create better outcomes for patients whilst promoting patient/person centred multi-disciplinary approaches to medical healthcare. * If you like the work that we do? Please help to support us. * All donations will be graciously received. Carole ~ CEO / Co-Founder on behalf of all patient volunteers at FibroFlutters

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The #chronicillnessVOICE Daily

The #chronicillnessVOICE DailyRead our daily news – for #patients #health #medical #pharma #research related newsletter for everyone #notjustpatients’

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EDS, JHS, Hypermobility & HSD’s News and info

HMSA – Hypermobility Syndromes Association A Charity and place for EDS JHS HMS/HSDs and other connective tissue disorders
EDS reclassification as of 15th March 2017 – FibroFlutters INFO POST FibroFlutters INFO POST
Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK
The Ehlers=Danlos Society Charity and place for EDS and HMS info and support
Ehler's Danlos Support Uk EDS UK was set up in 1987 to support, advise & inform those living with the Ehlers-Danlos syndromes. 25+ years later, they remain the only UK based charity that exclusively represents & supports EDS.

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eyeforpharma patient policy eyeforpharma: Patient Policy By Paul Simms, Chairman, eyeforpharma. Updated August 2017

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$The Liebster Award: The Official Rules + My First Blog Award and a Few Personal Secrets Revealed - May 2, 2013 \ Lorraine > Last Updated on: December 7th, 2017$

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Calendar of posts

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#PEinEarlyStages is part of a series of Patient Focused Medicines Development - PFMD ) How-To Guides co-created in a multi-stakeholder environment built with #PatientEngagement Quality Guidance.

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Saturday Stories: Delta, Ventilation, and Childhood COVID June 19, 2021
Jennifer Yang and Kenyon Wallace, in The Toronto Star, on how cities, provinces and countries awash in vaccines can still mess things up if they're not cautious with the Delta variant. Tavia Grant, in The Globe and Mail, on the need to address ventilation in workplaces. Edward Nirenberg and Risa Hoshino, in Medpage Today, on […]
Weighty Matters
100% semolina black and white sesame seed 83% hydration sourdough June 19, 2021
100% semolina black and white sesame seed 83% hydration sourdough Submitted by Benito on June 19, 2021 - 5:51am. Trying to learning more about pH guided sourdough baking I decided to bake another 100% Semola Rimacinata bread. Last time I felt that the dough didn’t hydrate as well as I remembered when I last baked […]
The Fresh Loaf
Date Syrup Chocolate Chip Cookies June 19, 2021
Someone told me they once found Sonoma Syrups Vanilla Bean Crush at Marshalls, so I never go to Marshall’s, Ross or TJ Maxx without checking the gourmet food section for deeply discounted coveted ingredients. Sonoma Syrups has been my white whale, but the other day I found something even better. I popped into Ross to... […]
Cookie Madness - Keeping Life Sweet One Cookie at a Time
Stress during pandemic linked to poor sleep June 19, 2021
A study found that stress, anxiety and depression during the first few weeks of the pandemic were associated with less and lower quality sleep. In a survey of more than 900 twins, about half of the respondents reported no change in sleep patterns, but 32.9 percent reported decreased sleep. Another 29.8 percent reported sleeping more. […]
ScienceDaily » Chronic Illness News
Issue #270: People with Chronic Illness are Hypersensitive to Stress as It Manifests as Physical Pain & Self-Compassion During a Pain Flare Can be Tough as Your Mental Health is Suffering, Too June 19, 2021
Friday, 18 June 2021. Issue #270. In This Issue: The toxicity of stress may not be apparent to a healthy person, but people with chronic illness are hypersensitive to it, as it can cause physical pain. When you’re in a pain flare, your mental health suffers too, and you can enter into a joyless state. […]
A Chronic Voice • Articulating lifelong illness
Frosted Watermelon Rosemary Frosé. June 19, 2021
Frosted Watermelon Rosemary Frosé. Celebrating summer with this Frosted Watermelon Rosemary Frosé. Fresh watermelon juice infused with rosemary and lemon and blended with sweet frozen Rosè. This frosty frosé is so easy to create. Simply freeze the rosé overnight, then mix everything together in a blender for a summer cocktail that’s perfectly icy, sweet, and […]
Half Baked Harvest by Tieghan.
Rainbow Cake! June 19, 2021
A delicious and bright Rainbow Cake with vanilla buttercream frosting, a pink drip and sprinkles! Oh hellooo most requested recipe OF ALL TIME. I am not even joking, this recipe has been requested over and over again and I am ~finally~ posting it on to my blog! It’s taken a fair old time as I […]
Jane&#39;s Patisserie - Cake Baking Journey
Oat porridge variations June 19, 2021
Oat porridge variations Submitted by peacecow on June 18, 2021 - 8:41pm. I realized I'll never to to post if I wait to organize my pictures, so just wanted to note down my recent oat porridge experiments. My friends really like Maurizo's oat porridge loaf, and I used it to try out a couple things […]
The Fresh Loaf
The Weekend Dish: 6/19/2021 June 19, 2021
The Weekend Dish: 6/19/2021 Happy Saturday! It’s the last day of spring! My kids have been so excited to countdown the days until it is officially summer. I hope you have a wonderful weekend and, to any dad’s out there, have a fantastic Father’s Day :) On Brown Eyed Baker This Week Old-Fashioned Ice Cream […]
Brown Eyed Baker by Michelle
Why Change People, Places, and Things in Early Recovery? June 19, 2021
Those who are overcoming addiction may have heard that it's important to avoid certain things in early recovery, but why? The answer lies in the brain.
Psychology Today | Neuroscience

Review eligibility of Paramedic Science students for the NHS Learning Support Fund

NIHR – Clinical research is everyone’s future

Chronic Illness Bloggers

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FibroFlutters HQ FB Page

FibroFlutters HQ FB Page

Medical news stories / blog posts / research / pharma /science

Medical news stories, blogs and research
Fibroflutters #SocialMedia #healthadvocacy and #allstakeholder approach to #healthcare, across the globe – Peeking at the statistics!
Welcome to the Samaritans Monthly Newsletter | Samaritans | June 2019
New data-led NHS safety strategy lets patients log concerns | Owen Hughes | Digital Health | 8 July 2019
New edition of Airing Pain | Pain Concern | 2 July 2019
For a healthier heart read NHLBI Deliciously Healthy Eating Recipes
Fibromyalgia – Musculoskeletal and Connective Tissue Disorders – Merck Manual Professional Edition
A – Z of Clinical Research – Making Research Better | NIHR
Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK
Patient | Causes and treatments of Irritable Bowel Syndrome (IBS) – video | Dr Sarah Jarvis
British Heart Foundation | Keep hearts beating and blood flowing | 13 June 2018
Muscle Cramps (Charley Horse) and Muscle Spasms |By John A. Daller, MD
Barriers to Patient-Centered Research Aired at Harvard Symposium | EMR & HIPAA | Andy Oram | 2 July 2018
Accepting ‘Chronic Illness’ (Updated Post) | Carole Scrafton
Article – Muscle Atrophy Symptoms Causes-and Treatments. | Healthguidance.org | Poignancy regarding #chronicillness & the wastage in my left leg.
Joint Hypermobility and Fibromyalgia | Is there a connection? | Carole Scrafton
(EDS UK) Ehlers Danlos UK – Fibromyalgia and CF (Chronic fatigue) by Dr Alan Hakim, MA FRCP
Article from HMSA – Anaesthetic and JHS / EDS – Posted By Alan Hakim, June 29, 2013
How does our brain process fear? Study investigates | Medical News Today
Product Review | Nrem Sleep System | Sponsored Post
#NeuroendocrineCancer #NETS RonnyAllan.NET – Community Newsletter Covering August 2018 #PatientAdvocacy
#PAM2018 #Arthritis #Toolkit #TeamApproach #HealthCare The Arthritis Foundation | Managing Health Care With Arthritis | 10 September 2018
Scope Blog Post | “We all want to be a part of society don’t we?” Addressing loneliness in disabled people
Article from Arthritis-health: How Chronic Pain May Sap Your Motivation
How Neglecting Minorities in Medical Research Has Led to Deadly Outcomes | Brian Clark | CEO of (Human Data Project) HDP Health
Why ADHD Can Look Like Depression | By Neil Petersen | psychcentral.com
Migraine Again | Why Painful Light Sensitivity Affects Many with Migraines
Study suggests small cell lung cancer should not be treated as single disease | Cancer Research
A discovery that could alter the whole way that disorders such as Multiple Sclerosis, Autism & Alzeimers are looked at : ‘Landmark discovery’ of vessels connecting brain to immune system – Medical News Today
30 years after Prozac arrived, we still buy the lie that chemical imbalances cause depression | Olivia Goldhill | Quartz
Article from Fibromyalgia News Today (FNT) – Skin of Fibromyalgia Patients Could Provide Disease Clues
5 Ways to Decrease the Health Risks of Sitting | Jaime A. Heidel | June 27, 2016
The most underrated scientific breakthroughs of 2017 | Quartz
8 Tips for Patients Newly Diagnosed with Ehlers-Danlos | Shared via painnewsnetwork.org (2015) | Ellen Lennox Smith
The Importance of Stomach Acid: Why Antacids Could Make You Sick | Hormones Matter
Brain Fog clouding your view of Multiple Sclerosis a cognitive impairment
Article from MigraineAgain: Aching Body, Aching Head: Understanding Migraine and Fibromyalgia
Article: Diagnosing Depression in People with Chronic Pain – Arthritis Health
Pain: Hope Through Research: National Institute of Neurological Disorders and Stroke (NINDS)
Articles from Pro Health: 1- It’s Not All in Your Head – It’s in Your Hands! & 2: Fibromyalgia Research update
Fibromyalgia now considered as a lifelong central nervous system (CNS) disorder
#PAM2018 | What Happens Up Stream Comes Down Stream: The Cause and Effect of the Mental and Physical Connection | Treasures On The Sand | 24 September 2018
#PAM2018 #Arthritis #Toolkit #TeamApproach #HealthCare The Arthritis Foundation | Managing Health Care With Arthritis | 10 September 2018
#NeuroendocrineCancer #NETS RonnyAllan.NET – Community Newsletter Covering August 2018 #PatientAdvocacy
A few FREE Health apps & e-books
A selection of posts from around the National Institutes of Health (NIH) Family
Article -Huffington Post: Here’s How To Stop A Migraine Before It Destroys Your Whole Day
Article: Joint hypermobility: emerging disease or illness behaviour? – Journal of the Royal College of Physicians
Central nervous system and Sympathetic Skin Response
Central Sensitivity Syndromes – Difficult to Classify
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