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  • Home – Latest Posts
    • International Fibromyalgia Awareness Day – Happy 8th Birthday to FibroFlutters
    • Redevelopment and rebranding underway at Flutters and Strutters
    • My experience – First face-to-face event in 2 years!
    • Patient Engagement Day with Prime Patient – Did you miss it?
    • Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21
    • International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
    • Clinician Series is back with a Fresh new format – AIMed
    • Patient Engagement With Patient Focused Medicine Development
    • RARE Summit 21 – it’s more than an event – it’s where the magic happens!
    • Voice your opinions to improve medical products and services
    • Rare Disease Male Support Group – mental health community support.
    • Irritable bowel syndrome (IBS) what is it? – video | Patient | Dr Sarah Jarvis
    • HOME – Categories
    • Do you have constant pain? This article may interest you!
    • We’re off mobilising for charity – 1 month long Superhero Series challenge
    • ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.
    • Health, Medical, Research, Patient and Pharma related newsletters
    • Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
    • Look at us on this chronic illness related community ‘aDoddle Map’ for groups, charities and related organisations to help locate each other!
    • FibroFlutters ~ CHRONIC, INVISIBLE AND RARE ILLNESS SUPPORT / ADVICE / ADVOCACY| Disclaimer | Privacy Notes | 8 May 2018
    • Fibromyalgia? What’s that?Pronounced:- Fi – bro – my – al – jia – UPDATED POST
    • Pharma and Health Hub – Reuters Events Pharma Formerly eyeforpharma
  • The chronicillnessVOICE
  • Zebra Strutters – Rare Disease Advocacy
    • EDS, JHS, HMS & all things collagen / connective-tissue
      • Hypermobility disorders & EDS reclassification as of 15th March 2017
      • Lara Bloom has Ehlers-Danlos Syndrome, a genetic connective tissue condition and this is her interview on ‘The Moment’ with Maxine Mawhinney.
      • Info site – Ehlers Danlos UK: Hypermobility Ehlers-Danlos syndrome
      • Autonomic Dysfunction Sheet (PoTS) for people with EDS – HT / (h)EDS | Ehlers Danlos Support UK
      • How to Explain Your Pain to a Doctor | EDS and Chronic Pain News & Info
      • (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
      • Volunteer with The Ehlers-Danlos Society | Volunteer Opportunities (2018)
      • (EDS UK) Ehlers Danlos UK – Fibromyalgia and CF (Chronic fatigue) by Dr Alan Hakim, MA FRCP
    • Rare neurological disease – Awareness campaign for AtaxiaUK #IAAD21
    • International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
    • Rare Disease Male Support Group – mental health community support.
    • Dazzle4Rare 2021 – #StrutYourStripes with us at ZebraStrutters to raise awareness!
    • ARDEnt Report – Rare Disease and the impact of the COVID19 pandemic.
    • Pigmented Villonodular Synovitis (PVNS) our Co-Founder’s patient experience with ultra rare disease. #dazzle4rare2020
    • Are you aware of this #Rare? Today is International Ataxia Awareness Day.
    • Are you aware of this #Rare? | Wolfram Syndrome UK Virtual Conference 2020 | 19th and 26th September
    • Today is #RareDiseaseDay – Read my Patient Experience: Living with multiple rare diseases | Pharmafile | What’s your #Rare? care to share?
    • It is time to ‘dazzle’, ‘strut your stripes’ and share ‘rare voices’ for #dazzle4rare2020! 9 – 14th August
  • PHARMA / SCIENCE / TECH / DIGITAL / AI
    • Real World Evidence Live: Rare Diseases & Innovative Therapies
    • My experience – First face-to-face event in 2 years!
  • Medical Disorders
  • Mental Health
    • MedicineNet ~ Newsletter |  Stages of Alcohol Use Disorder  |  30 August 2018
    • Why ADHD Can Look Like Depression | By Neil Petersen | psychcentral.com
    • NHS Choices: Ten ways to fight your fears – Stress, anxiety and depression – NHS Choices
    • This Is Your Body On Anxiety
    • How does our brain process fear? Study investigates | Medical News Today
    • How does Chronic Illness / Pain affect your Sleeping Habits
  • Treatments and Therapies
    • Therapies and Treatments
      • How to Get Started with Essential Oils – Pink Fortitude, LLC
      • THE BOWEN TECHNIQUE FOR PAIN RELIEF IN FIBROMYALGIA AND BACK PAIN…
      • Medical news Article: How Muscle Relaxants can Benefit People Suffering From Fibromyalgia | Welcome to Fibromyalgia Symptoms
      • WHAT ARE SOME OF THE MOST USED MEDICATIONS TO TAKE FOR FIBROMYALGIA?…
      • Hydrotherapy – Heaven or hell? Part Four – Week Four starting 22/02/2017
      • Hydrotherapy – Heaven or hell? Part Two – session one / week one
      • Product Review | Nrem Sleep System | Sponsored Post
  • The Chillout Lounge
    • The CHILLOUT LOUNGE
    • Alternative / Complementary Therapies & Treatments
      • TREAT YOURSELF WITH ACUPRESSURE FOR LOWER BACK PAIN… – BACK PAIN BLOG UK…
      • Cannacares CBD gel capsules Product Review – (sponsored)
      • Reflexology reduces anxiety and improves quality of sleep in informal carers — Federation of Holistic Therapists (FHT) – BACK PAIN BLOG UK…
      • Your Aromatherapy Guide  |  Jan Randall  |  14 April 2018
      • ‘OIL’ have you know!
        • Fibromyalgia, Essential Oils, and You | Fibromyalgia news Today | Robin Dix
        • Honey Colony’s Superior Cannabinoid Rich Hemp Oil ⋆ Lilac and Lyme
        • INFO site: Thinking about trying something complementary here are the ‘Ten Must Have Basic Essential Oils’ | your-aromatherapy-guide.com
        • Are You in Chronic Stress Mode? Seastones natural therapies
        • Complementary Therapy – Massage for Stress Management: Get in touch with its many benefits – Mayo Clinic
        • Reblogged |TRIGGER POINT THERAPY FOR CHRONIC PAIN AND FIBROMYALGIA | BackPainBlog
        • Touch Heals
    • Relaxation Techniques
      • Mindfulness & ilk | Meditation / Study / Relaxation | 3 hours of relaxing music – Peder B. Helland
      • Serenely Sunday: Guided Imagery, Visualisation & Relaxation down by the Lake
      • The Therapeutic Benefits of Gardening | By: Virgil Anderson
      • Serenly Sunday – Let’s take a few deep breaths… and a few slow steps…
      • Relaxation can be the key to helping us to recharge our batteries when they’re feeling a bit on the flat side…
      • Article from Huff Post Healthy Living: 5 Big Benefits Of Being A Doodler
      • Serenely Sunday: A lake that is noisy cannot reflect anything – Robert Adams
  • Newsletters/Papers/Magazines
    • Health, Medical, Research, Patient and Pharma related newsletters
    • Freshly updated Selected Newsletters from News Medical
  • Awareness campaigns
    • Fibromyalgia Awareness Week 2021 – #BecomeFibroAware
    • International Ataxia Awareness Day 25th September with ‘Ataxia and Me’
    • International Awareness Day May 12th
    • Ehlers-Danlos Syndrome Awareness in the Month of May
    • May 12th International Fibromyalgia Awareness Day
    • FMAUK | Fighting for the freedom from Fibromyalgia
  • Research related readables
    • ARMA has a new #knowledgehub
    • Accessing specialist doctors faster after a brain injury
    • Bursitis and Osteoarthritis Similarities and Differences | News Medical | By Tim Boughton, M.Sc.
    • Focusing on Nature for New Sources of Analgesic Compounds | Craig Hopp, PhD | NCCIH |  July 1 2019
    • Somatic Symptom Disorder. Learn about this disorder. | Patient
    • Are you interested in #research? Would like to get more involved, or know what research is going on around you?
    • You may be partly conscious under general anesthesia  |  Ana Sandoiu  | Medical News Today | 6 July 2018
    • Pain: Hope Through Research: National Institute of Neurological Disorders and Stroke (NINDS)
  • Food, drink and recipes
    • Sweet potato and spinach chilli recipe | Patient
    • For a healthier heart read NHLBI Deliciously Healthy Eating Recipes
    • Simple and easy Cauliflower English Muffins.
    • Two Peas and Their Pod Lemon Almond Cookies – Bake at 350°
    • Ellen Bayens | The Celiac Scene News | Issue: August 2019
    • Patient Newsletter  |  Subject:  The best foods for fighting skin problems |  11 July 2018
    • Make The Healthiest Desserts Ever With Only Fruits, Nuts And Seeds – The Alternative Daily
    • 10 Amazing Health Benefits Of Green Tea | DIY Health Remedy
    • Natural Remedies: Ginger Ale Recipe for Pain: Reduce Chronic Inflammation, Migraines, & Pain REALfarmacy.com | Healthy News and Information
  • The hints and tips station
    • How to sleep when pregnant: Best positions and sleep aids
    • Do you have arthritis? and do you find exercising problematic? Read this post by Arthritis Foundation
    • #PAM2018 #Arthritis  #Toolkit  #TeamApproach  #HealthCare The Arthritis Foundation  |   Managing Health Care With Arthritis  |  10 September 2018
    • Live Better with Rheumatoid Arthritis  |  Arthritis Foundation 
    • Do you know how to make the most of your Doctors appointment? | fibrofly73
    • THE BEST EVER PORTABLE HEAT PAD FOR TRAVEL..
    • How to employ your own Personal Assistant (PA)
    • Article -Huffington Post: Here’s How To Stop A Migraine Before It Destroys Your Whole Day
    • HOW TO KEEP A PAIN DIARY (free download)…
  • SoMe Patient Platforms
    • healtheo360 Join a ‘PATIENT’ community and share your story!
    • Look at us on this chronic illness related community ‘aDoddle Map’ for groups, charities and related organisations to help locate each other!
    • Weekly Digest for September 10th, 2018 [Mayo Clinic Social Media Network]
    • Are you a ‘SAVVY’ patient? come and check it out!
    • Are you looking for a chance to change the future of personalized health, join ‘Patients Like Me’.
    • NEW online magazine channel | Siemens Healthineers ~ News & Stories – Online magazine channel 
    • RELIEF: PAIN RESEARCH NEWS, INSIGHTS AND IDEAS |BROUGHT TO YOU BY THE IASP PAIN RESEARCH FORUM
    • New Patient platform!  patient-patient registry
    • Chronic Illness Bloggers | Connecting You to the Chronic Illness Community
  • Musculoskeletal
    • Fibromyalgia & Chronic Pain
      • Stretch, 1, 2, 3, 4… Bend 1, 2, 3, 4 … | ActivePosture shirt – Product review | Carole Scrafton
      • Article: Diagnosing Depression in People with Chronic Pain – Arthritis Health
      • Rare Revolution Mag ~ Morven May MacCullum discusses her journey with Lyme Disease about finding new purpose
      • I love to nap. Do you? |You may enjoy reading ‘Napping: the expert’s guide’
      • Patients & Caregivers | American College of Rheumatology | Find information you need about rheumatic diseases & conditions.
      • Fibro – What’s that? Find out here!
      • Central Sensitivity Syndromes – Difficult to Classify
      • Where can you find Fibromyalgia and Chronic Pain resources across the Globe? Find out here!
      • Latest edition! ARMA Newletters | Arthritis & Musculoskeletal Alliance | March / February 2019
      • Do you have arthritis? and do you find exercising problematic? Read this post by Arthritis Foundation
      • Fibromyalgia? What’s that?Pronounced:- Fi – bro – my – al – jia – UPDATED POST
      • MSK services survey – Please let us know what is happening locally | ARMA
      • Fibromyalgia – What’s that? Find out where to find relevant information :-)
      • What are the Symptoms of Fibromyalgia? UPDATED POST
      • Article – Muscle Atrophy Symptoms Causes-and Treatments. | Healthguidance.org | Poignancy regarding #chronicillness & the wastage in my left leg.
      • Fibromyalgia – Symptoms – NHS Choices
      • The burdens of pain management, inflammation and sensitivity to anti-inflammatories. | Carole Scrafton | 27 March 2019
      • DO THE DISCS IN YOUR SPINE ‘SLIP’ ?…|  BARMAC5 | BackPainBlog  | 22 September 2018
      • Fibro Files: 1990 ACR classification pdf and Tender Points image for diagnosing Fibromyalgia
      • Central nervous system and Sympathetic Skin Response
      • How is Fibromyalgia Classified/Diagnosed Part 1 – Historical background – From Fibrositis to Fibromyalgia
      • How is Fibromyalgia Classified/Diagnosed Part 2 – TpT & ACR diagnostic criteria of 1990
      • Tune in: How Listening to Music Improves Fibromyalgia | Katarina Zulak ~ Skillfully Well & Painfully Aware |  4 August 2017
      • Fibromyalgia – Musculoskeletal and Connective Tissue Disorders – Merck Manual Professional Edition
      • Hyperparathyroidism Sometimes Misdiagnosed as Fibromyalgia | edsinfo.wordpress.com
      • Article from MigraineAgain: Aching Body, Aching Head: Understanding Migraine and Fibromyalgia
      • Migraine Again | Why Painful Light Sensitivity Affects Many with Migraines
      • Questions and Answers About Fibromyalgia – Information resource | NIAMS
      • Exclusive Interview: Health Ergonomics – Health Professional explains what it is and then talks about how #covid19 pivoted her into tele-consulting.
      • Top 10 Self-Help Tips for Back Pain and Fibromyalgia Sufferers | Nichola Adams, Health Ergonomist
      • Skin Rashes and Fibromyalgia Syndrome
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The C3 Summit was a fantastic event and TransPerfect LifeSciences were the most amazing hosts.
More pictures from Tuesday evening of mojito's and fun!
Dinner out with these two funny people last night was a real hoot!!

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  • Danish Loaf September 28, 2023
    Danish Loaf Submitted by Benito on September 27, 2023 - 12:29pm. I’ve been wanting to try baking this style of bread for some time, but just couldn’t get my nerve up to trying it.  Despite its name, it seems that it is really an Asian style of bread.  I’m gue..
    The Fresh Loaf
  • Facebook Live: Youth Suicide Prevention September 28, 2023
    In recognition of National Suicide Prevention Awareness Month in September, NIMH hosted a Facebook Live event on youth suicide prevention.
    National Institute of Mental Health (NIMH)
  • Facebook Live: Youth Suicide Prevention September 28, 2023
    In recognition of National Suicide Prevention Awareness Month in September, the National Institute of Mental Health (NIMH) hosted a Facebook Live event on youth suicide prevention.
    National Institute of Mental Health (NIMH)
  • Crock Pot Honey Garlic Meatballs September 27, 2023
    Tender meatballs simmered in a sweet and savory sauce and all made in the slow cooker. This viral Tik Tok recipe for Crock Pot Honey Garlic Meatballs are perfect as an appetizer or dinner! ANOTHER DELICIOUS VIRAL TIKTOK RECIPE See what all the fuss is about w..
    The Country Cook
  • 696: 5 Keys to Raising Kids for a Lifetime of Physical and Mental Health With Dr. Brian Stenzler September 27, 2023
    I’m talking with Dr. Brian Stenzler today, the bestselling author of D.R.E.A.M Wellness: The 5 Keys to Raising Kids for a Lifetime of Physical and Mental Health. He’s also the co-founder of D.R.E.A.M Wellness and he’s owned and operated multiple wellness cent..
    Blog – Wellness Mama
  • The Slc45a4 gene regulates pigmentation in a manner distinct from that of the OCA4 gene Slc45a2 September 27, 2023
    Though sucrose is not detected in human body fluids and cells, putative sucrose transporters are conserved. They are classified as the solute carrier 45 A (SLC45A) family, which is constituted by four members, namely SLC45A1, 2, 3 and 4 (Vitavska and Wieczorek..
    Journal of Investigative Dermatology
  • Melatonin protects K15+ human hair follicle stem cells and hair matrix keratinocytes against paclitaxel-induced damage ex vivo September 27, 2023
    Chemotherapy-induced alopecia (CIA) consistently ranks amongst the most distressing adverse effects of cancer therapy, especially when this hair loss becomes permanent (pCIA) (Dua et al. 2017; Freites-Martinez et al. 2019a; Özüsağlam and Can 2021; Paterson et ..
    Journal of Investigative Dermatology
  • Apple Sticky Buns September 27, 2023
    Whether you’re craving a comforting fall morning breakfast or a sweet indulgence for dessert, these Apple Sticky Buns have got you covered. While we often associate certain ingredients and recipes with specific seasons – such…
    Sprinkle Bakes by Heather Baird
  • Creamy Chicken and Wild Rice Soup September 27, 2023
    Creamy chicken & wild rice soup: Easy to make in just one pot, and so comforting! Chock-full of chicken, veggies, and hearty wild rice. (more…) ..
    Baking A Moment
  • Do Clothes Make the Psychiatrist? September 27, 2023
    What's the psychiatry dress code?
    Psychiatric Times

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The C3 Summit was a fantastic event and TransPerfect LifeSciences were the most amazing hosts.
More pictures from Tuesday evening of mojito's and fun!
Dinner out with these two funny people last night was a real hoot!!

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An eye into the unknown
An eye into the unknown
Feel the stillness and breathe long and deep
Feel the stillness and breathe long and deep
Great place for sound imagery, hear the watery echoes
Great place for sound imagery, hear the watery echoes
Go on take a seat, sit back let yourself relax and close your eyes, and absorb the nature around you What can you hear? What can you smell?
Go on take a seat, sit back let yourself relax and close your eyes, and absorb the nature around you What can you hear? What can you smell?
Fantasy land
Fantasy land
Listen to the sounds of the water rushing and feel its energy as is flows and you breathe
Listen to the sounds of the water rushing and feel its energy as is flows and you breathe
A place of serenity by the pool
A place of serenity by the pool
Guide yourself down the path to the...?
Guide yourself down the path to the…?
An image to guide your mind to anywhere whilst laying on the beach
An image to guide your mind to anywhere whilst laying on the beach
Who would you like to sit and chat with?
Who would you like to sit and chat with?
What will you find if you wander through the gate
What will you find if you wander through the gate
StillnessSpeaks.com
StillnessSpeaks.com
... forget about the world and spend some time on yourself
… forget about the world and spend some time on yourself
A scented garden to take your mind on a soothing aromatic journey.
A scented garden to take your mind on a soothing aromatic journey.
A thoughtful walk or a fantastical adventure with fairies and pixies, or knights on white horses!? wherever your mind takes you.
A thoughtful walk or a fantastical adventure with fairies and pixies, or knights on white horses!? wherever your mind takes you.
A picture for using your imagination to take you on a peaceful journey
A picture for using your imagination to take you on a peaceful journey
aving a tough time, can't figure things out? Here's a pretty place for self reflection
aving a tough time, can’t figure things out? Here’s a pretty place for self reflection

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