#chronicillnessVOICE | Health & medical related mini-mag for everyone| February 2019 | #notjustpatients

A selection of online health related newspapers, magazines,
newsletters, blogs, research & events.

Delivering a broad range of news from around the medical healthcare industries across social media and into your inbox, if you like what you see please remember to sign up to receive our updates, many thanks, Carole ~ Editor

February has been a busy month as we slowly creep out of hibernation mode and work towards waking up for Spring.

One of the main things that has been keeping me busy during the winter months is being on the steering committee that is busy designing the agenda etc, for the next Im-Patient conference on 12th -14th March in Barcelona.

You can access the agenda and meet the team within this issue of #chronicillnessVOICE mini-mag.

Home news

February 4th saw the 25th birthday anniversary of our ‘sister’ Fibromyalgia support group in Sunderland. It was a lovely and fun afternoon with representatives from 7 different Fibromyalgia support groups from across the North East of England. What an achievement and a fantastic way to start off the year for Sarah McKeown Allan who runs the group. Fabulous bunch of people, with a superb buffet and of course a wonderful cake.

February 8th was another Fibromyalgia support group get together this time for afternoon tea. Elaine Hanson one of our Founding Five members and our chief charity fundraising advocate, especially for cancer connections, assists with this group as an admin on Facebook and also with other things too. Julie Anne Stephenson the group leader and her members welcomed me very warmly to their meet up for Fibromyalgia patients within Tyne & Wear.

It is always great to meet other groups and to learn how we can possibly collaborate and support one another. Naturally, FibroFlutters isn’t just for Fibro and the support we offer is predominently online because many patients with chronic illnesses, including fibromyalgia, can’t actually get out of the house to attend physical meetings. Having online support is often the only lifeline that such patients have. Spreading this word amongst our local groups is important so that they know support is available to them from varying sources, not just for their fibromyalgia but holistically for chronic illness per se.

We’ve just had our own first support group meet up of the year on 19th February where it was a small informal gathering of people who sat and discussed all aspects of our health, healthcare, medical care, research and opportunities, mental health, and where needed we discussed ‘how we can support’ those of us that need a bit extra when times are difficult. Where can we point people to get appropriate, safe and recommended help will always be amongst our priorities at FibroFlutters.

This meet up was a great opportunity for myself and fellow Founding Five Member Ian Foulger to give each other progress reports regarding the work we are both doing in the fields of pharma and clinical research. Both of us are Patient Research Ambassadors for NIHR, and keen to get patients involved more with clinical research. We are both currently enjoying being involved with event designing for pharma, and clinical research, as patient voices, on behalf of FibroFlutters. We can’t even discuss with each other exactly what our work is entailing so you will have to wait for the special report in April to read all about it.
Naturally you all know that I’m on the steering committee for Im-Patient Barcelona on 13th March, but Ian is on the steering committee for an event being built with the NIHR where the idea came from one of my conversations with my ‘PRA’ contact ‘Kevin Short(Lead Nurse at NIHR CRN: North East & North Cumbria) back in November 2017. I promise all will be revealed very soon!

With only a couple of weeks to go until Im-patient Barcelona 2019 this is what eyeforpharma chairman Paul Simms has to say in advance about the agenda that myself and the other steering committee members have put together. Matt Eagles, Elly Aylwin-Foster, Alan ThomasAndrea Ruano, Birgit BauerCandace Lerman

#impatientconf #efpbarca #patients #pharma #collaboration #trialsinking #patientvoice #patientengagement

Wow! well this time next week Im-Patient Barcelona takes place and, boy, are we eager to get the conversations and deliberations going. Of course the aim is to help develop new solutions, share positive progression and hopefully help new lasting relationships between pharma and patients whilst involving all stakeholders. Learn more about what will be happening via the link below.

17th Annual PATIENT ENGAGEMENT at eyeforpharma Barcelona
Check out this link to see the im-patient agenda

It is taking longer than anticipated


  1. Contents & words from the editor
  2. Ellen Bayens | The Celiac Scene News |
    1. Issue: February 2019
  3. Chronic Bloggers – #patientvoice
    1. BARMAC5 | BackPainBlog
    2. Ronny Allan’s Letter from America
    3. Sam Moss and My Medical Musings
    4. The Migraine Mantras
  4. Musculoskeletal – #bones #joints #muscles #connectivetissue
    1. NRAS newsletter February 2019
    2. Arthritis Action Newsletter
    3. ARMA
    4. The Ehlers-Danlos Society|  CONNECT:
    5. Arthritis Foundation – It’s all about joints
  5. Medical & Health News:
    1. Heart Matters | chair-based yoga exercises | 23 February 2019
    2. MNT weekly newsletter
    3. My favourite health related paper.lis
    4. Patient Newsletter
    5. Disability News Service
    6. Neuroscience News
  6. Professional reads:
    1. NIHR
    2. NIH News in Health – March 2019
    3. NIH Research Matters – 5 March 2019
  7. All about Pain:
    1. Airing Pain
    2. SIP Newsletter
  8. Pharma, science, tech, digital and AI:
    1. Articles from eyeforpharma
    2. STAT: Morning Rounds 5 March 2019
    3. Medtech Dive – WEEKENDER 9 March 2019
    4. BioPharma Dive | Weekender 9 March 2019
    5. Pharmaceutical Online Newsletter | 9 March 2019
    6. Healthcare IT Today | 9 March 2019
    7. Life Science Leader Newsletter | 8 March 2019
    8. Digital Health Digest | 8 March 2019
  9. Awareness campaigns, clinical trials, surveys & petitions
    1. FEATURE: Find Me A Cure – finding you clinical trials and connecting you to the right people via the right channels
    2. Clinical Trial Recruitment | Take a Proactive Step for Parkinson’s Disease Patients via CureClick and WEGO Health
  10. FibroFlutters Mental Health Group on FaceBook & The Chillout Lounge
  11. Endnotes and other useful Flutter Links

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