Public Speaking Workshop | Speakers Trust

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July 26, 2018 fibrofly73Charities, Educational, Info site, Patient Advocacy, Professionals, The hints and tips stationCommunincation skills, CPD, Find your voice, Presentation skills, Presenting, Public Speaking, Speakers Trust, Speaking, Training, Workshop

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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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Homemade Profiteroles April 20, 2021
Homemade Profiteroles Choux pastry is baked into round puffs and filled with your favorite ice cream in these decadent profiteroles. Topped with an irresistible chocolate sauce, this recipe will take your cream puff to a whole new level. Since mastering a basic pâte à choux, I have enjoyed making eclairs, cream puffs, churros, gougeres, and […]
Brown Eyed Baker by Michelle
Roasted Asparagus with Balsamic Brown Butter April 20, 2021
Roasted Asparagus with Balsamic Brown Butter Sauce is my go-to recipe when this delicious vegetable is in season. A simple sauce of brown butter, soy sauce, and balsamic vinegar is drizzled over perfectly roasted asparagus. This Oven Roasted Asparagus is my favorite way to prepare this spring vegetable. The roasting brings out the natural sweetness of […]
That Skinny Chick Can Bake - Where recipe magic happens...
To All the Abused Kids Who Are Dealing with the Consequences as Adults… April 20, 2021
“The feeling of being rejected, disapproved of, or conditionally loved by one’s primary caregivers is a monumental, long-lasting burden for a child to carry. It produces chronic shame, guilt, and anxiety. The child is blamed for doing something wrong and in doing so learns to perceive themselves as being bad.” ~Darius Cikanavicius, Human Development and Trauma: […]
Tiny Buddha
CROCK POT MEXICAN-STYLE SHREDDED BEEF April 19, 2021
This Crock Pot Mexican-Style Shredded Beef is perfect for taco night! Chuck roast, salsa, taco seasoning and sauce are all that's needed! So tender and flavorful! CROCK POT MEXICAN-STYLE SHREDDED BEEF One of the great things about slow cookers is they allow you to take a fairly tough and fairly inexpensive cut of meat and really... […]
The Country Cook
424 Health disparities in clinical trials for mycosis fungoides/Sézary syndrome: A systematic review April 19, 2021
Despite the growing evidence of health disparities in cancer clinical trials, there is a dearth of similar research in clinical trials for mycosis fungoides (MF)/Sézary syndrome (SS). We sought to determine whether participants in clinical trials for MF/SS would differ demographically, either by age, gender, or race, compared to the United States (US) population of […]
Journal of Investigative Dermatology
365 Adult atopic dermatitis is associated with lymphopenia in two large cohorts April 19, 2021
Laboratory abnormalities in atopic dermatitis (AD) are poorly understood and lymphopenia could occur due to skin homing of lymphocytes. We aimed to determine the extent to which adult AD is associated with lymphopenia in two large population-based cohorts from the UK and US: CPRD and the 2005-06 NHANES. Using logistic regression models adjusted for age, […]
Journal of Investigative Dermatology
429 Spirulina use and its temporal association with dermatomyositis exacerbation April 19, 2021
The immunostimulatory effects of complementary and alternative medicine (CAM) may lead to the exacerbation of autoimmunity. As a result, there is a need to characterize the temporal association between immunostimulatory CAM use and autoimmune skin diseases. We performed a nested retrospective study of prospectively-collected CAM usage data at UPenn. Patients with dermatomyositis (DM), cutaneous lupus […]
Journal of Investigative Dermatology
397 Dupilumab improves health-related quality of life (HRQoL) in children aged ≥6–<12 years with severe atopic dermatitis (AD) April 19, 2021
Severe AD negatively impacts patients’ and caregivers’ HRQoL in diverse domains such as social functioning, activities, and relationships. The Children’s Dermatology Life Quality Index (CDLQI; range 0–30) is a 10-item questionnaire that assesses patient/caregiver-reported impact of AD on HRQoL. In the multicenter phase 3 LIBERTY AD PEDS trial (NCT03345914), 367 severe AD patients aged ≥6–
Journal of Investigative Dermatology
141 Translation and growth pathways are directly influenced by autoimmune regulator (Aire) in skin keratinocytes April 19, 2021
Autoimmune regulator, Aire, is commonly known to function as a transcriptional regulator in medullary thymic epithelia. However, we and others have identified Aire to express and function in non-thymic tissues, including the skin, where it greatly influences inflammation and tumorigenesis. We report here that, within skin keratinocytes, Aire participates in a variety of cellular processes […]
Journal of Investigative Dermatology
461 A review of cutaneous lymphoma outcomes during COVID-19 pandemic at Columbia University April 19, 2021
New York-Presbyterian Hospital and Columbia University Irving Medical Center were heavily impacted by the COVID-19 pandemic. Various measures were taken in an effort to ensure patient and staff safety. The management of patients with complex dermatological oncologic conditions, such as cutaneous lymphomas was especially challenging. We retrospectively reviewed the charts of the patients with cutaneous […]
Journal of Investigative Dermatology

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

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

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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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