#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

DEADLINE FOR SURVEY 23RD APRIL >>> TOMORROW!
Oh! the ‘im-patients’ of it all!
Excerpt:

We’re putting on a pharma conference where patients are the ones to design, create and implement the programme. This way, patients really are setting the agenda.

Why not come and fill in the IDEAS survey and share your #patientvoice & even join the TEAM!… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

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#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Excerpt:

Oh! the ‘im-patients’ of it all!
Excerpt:

‘We’re putting on a pharma conference where patients are the ones to design, create and implement the programme. This way, patients really are setting the agenda. ‘

Why not come and fill in the IDEAS survey and share your #patientvoice even join the TEAM!… Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

The Power of Digitalizing Healthcare  | White Paper | Siemens Healthineers  |  15 Dec 2017

Free Downloadable Industry Report: The Power of Digitalizing Healthcare  | White Paper | Siemens Healthineers  |  15 Dec 2017 Exerpt: ‘Digital technology has disrupted many industries, including healthcare. Will smart data be able to support creating actionable insights that will help expand precision medicine, transform care delivery, and improve patient experience?’ http://www.healthcare.siemens.com/magazine Who are Siemens Healthineers?… Read More The Power of Digitalizing Healthcare  | White Paper | Siemens Healthineers  |  15 Dec 2017

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Excerpt:

Oh! the ‘im-patients’ of it all!
Excerpt:

‘We’re putting on a pharma conference where patients are the ones to design, create and implement the programme. This way, patients really are setting the agenda. ‘

Why not come and fill in the IDEAS survey and share your #patientvoice even join the TEAM!… Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

Despite being ill and having a decreased circle of friends, I realized I didn’t have to accept just anyone or anything. In fact I feel even more confident that I would prefer to have very few people in my life and yet have more quality relationships. Auto immunity Girl – Trish Dyne 18 April 2018… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

Pharma / Science / Tech / AI – News

Gender Bias!  Here’s how some tech companies are chipping away at bias against women  |  The Seattle Times |   Rachel Lerman  |  16 April 2018 Opening paragraph: ‘Bridget Frey was the only woman on Redfin’s engineering team in Seattle when she joined the online real-estate company more than six years ago. She wasn’t surprised, having worked… Read More Pharma / Science / Tech / AI – News

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

‘Many migraineurs experience light sensitivity as one of the many side effects of the condition. When in the midst of an attack, normal lighting can seem extremely bright and painful. Atop trying to manage the pain, we become desperate to dim the light, block the brightness, to find some relief. In this What’s Your Secret Video, we share some strategies to address this very real challenge. – What’s Your Secret: How to Manage Light Sensitivity? | Holly Baddour – Patient Advocate  |  migraine.com  |  17 April 2018… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Excerpt:

‘Past research has shown a connection between sleep deprivation and cognitive issues, emotional processing (the ability to determine if social cues are friendly or threatening) and control, impaired executive function (ability to complete basic tasks), attention, and working memory. Again, all of these things are things that are facts of life for those of us living with Fibromyalgia.’

Are sleep issues at the root of many Fibromyalgia symptoms? |  Counting My Spoons  |  Julie Ryan … Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

Excerpt:

‘I thought I would break the radio silence by providing you with an update on my gastroparesis and the botox treatment that I had back in September. I told you all that I would be giving regular updates but I’m awful so that obviously didn’t happen. Stop counting on me for things! You know I cannot be counted on! (I post way more regularly on Instagram and Facebook, just FYI)’ > MY STOMACH ONLY SORT OF WORKS NOW  |  Damsel in a Dress – blog  |  17 April 2018… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

#WEGOHEALTH  10 Tips for Participating in a Twitter Chat  |  Julie Cerrone WEGO HEALTH  |  11 April 2018 

#WEGOHEALTH  10 Tips for Participating in a Twitter Chat  |  Julie Cerrone WEGO HEALTH  |  11 April 2018  Julie Cerrone is ‘Patient Leader Network’ Director at WEGO Health Twitter chat is fast becoming a great way to communicate with each other about specific themes within our health / chronic illness areas.  It is also a fab… Read More #WEGOHEALTH  10 Tips for Participating in a Twitter Chat  |  Julie Cerrone WEGO HEALTH  |  11 April 2018 

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Excerpt:

‘Past research has shown a connection between sleep deprivation and cognitive issues, emotional processing (the ability to determine if social cues are friendly or threatening) and control, impaired executive function (ability to complete basic tasks), attention, and working memory. Again, all of these things are things that are facts of life for those of us living with Fibromyalgia.’

Are sleep issues at the root of many Fibromyalgia symptoms? |  Counting My Spoons  |  Julie Ryan … Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

And the stresses that it seems that most “regular” people’s bodies absorb without any obvious ill effects…well, ours get affected by them…big time! And it doesn’t have to be a major stress…even just low-level stress IS STRESS as far as fibromyalgia is concerned…even positive stress IS STRESS as far as fibromyalgia is concerned. From – I Have Fibromyalgia…I Work on Stress…The Fibromyalgia and Stress Connection… Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

Including: Above the Fold Brainless Blogger UK Care Guide Focus on Disability Fibro & ME Life Chronic Pain & Autoimmune Systemic Diseases & Dementia®   Daily! Above The Fold in Healthcare is out! By C. Michael Gibson MD  Have a news tip? email charlesmichaelgibson@gmail.com  Paper.li > Above the Fold in Healthcare   Twice daily!  Life Chronic… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Opening line:

‘The ‘bad apples’ of the immune system are also its secret weapon, according to major Australian research published today in the world-leading journal Science.’ > Bad antibodies made good: The immune system’s secret weapon uncovered  | Garvan Institute of Medical Research  … Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

‘We’re excited to share the topic and questions for this week’s #HITsm chat happening Friday, 4/13 at Noon ET (9 AM PT). This week’s chat will be hosted by Steve Sisko (@shimcode) on the topic of “How to Evolve Healthcare Conferences in the 21st Century”.’… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Quote:

“I love that we laugh together and cry together. I love that we are free to express to each other our deepest thoughts in a way that is raw and real.’  Sam Moss, Climbing mountains with my chronic illness friends. … Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

Empowered #patientchat – Are We Missing the Mark with Patient Involvement?

Empowered #patientchat – Are We Missing the Mark with Patient Involvement? Empowered #patientchat – Are We Missing the Mark with Patient Involvement? Opening paragraphs: ‘You’re Invited! We hope you’ll join us for our next Empowered #patientchat discussion as we explore patient involvement in research and development. We hope to see you Friday, April 6th on… Read More Empowered #patientchat – Are We Missing the Mark with Patient Involvement?

UPCOMING WEBINAR WITH EDS WELLNESS & Dr. Lawrence Afrin #MCAD #Hypermobility & #ChronicPain

UPCOMING WEBINAR WITH EDS WELLNESS: (MCAD) MAST CELL ACTIVATION DISEASE: CURRENT CONCEPTS WITH PARTICULAR NOTES ON HYPERMOBILITY AND CHRONIC PAIN’ Posted by:  Strength/Flexibility/Health/EDS  | K N Myles | Apr 3, 2018 | Opening paragraph: ‘EDS Wellness is thrilled to have Dr. Lawrence Afrin join the speaker line up for their 2018 Video Webinar Series &… Read More UPCOMING WEBINAR WITH EDS WELLNESS & Dr. Lawrence Afrin #MCAD #Hypermobility & #ChronicPain

Live Better with Rheumatoid Arthritis  |  Arthritis Foundation 

Useful ‘Toolkit!  Live Better with Rheumatoid Arthritis  |  Arthritis Foundation  |  19th March 2018 ‘This powerful resource will help you better understand your disease and take a positive step toward living a life of Yes. Get information, tips and tools that will help you work with your doctor to develop the best treatment plan for your… Read More Live Better with Rheumatoid Arthritis  |  Arthritis Foundation 

The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject

Exciting new magazine for youths with #rareillness |   The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject|  18 March 2018 ‘This magazine has been created and brought to you by the #RareYouthProject. Following a year long programme of work experience and mentoring, our team made up of children and young people aged 8-23 have created… Read More The RARE Revolution – Youth Takeover is here!!!! –  #RareYouthProject

We’re all-a-flutter | Paul Simms Chairman of eyeforpharma  |  21 March 2018

Excerpt:

‘The people who shook our hands and took time out to speak to us made us feel heard; we cannot fault that. Just in shock that such esteemed pharma folks would be interested, and eyeforpharma has taught us that pharma is actually listening. So we can go and spread the word of that now with confidence after experiencing it for ourselves first hand.… Read More We’re all-a-flutter | Paul Simms Chairman of eyeforpharma  |  21 March 2018

Pharma / Science / Tech / AI – News

THE 8 TH GLOBAL ORPHAN DRUG CONFERENCE AND EXPO Strategy, Regulation and Opportunity for Pharma, Biotech and Investors in Rare Diseases You can register via the link below! THE 8 TH GLOBAL ORPHAN DRUG CONFERENCE AND EXPO Strategy, Regulation and Opportunity for Pharma, Biotech and Investors in Rare Diseases Latest!  BioPharma Dive |  Newsletter | 27 March 2018 #pharma … Read More Pharma / Science / Tech / AI – News

#ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#chronicillness
Here’s a few links to my favourite online newspapers for finding a variety of health related news from other Chronic Illness Bloggers & Warriors, for up to date news about health conditions such as latest research papers or people sharing hints and tips about how they cope day-to-day.… Read More #ChronicIllness Morning Post | A selection of online health related newspapers/magazines/newsletters/blogs | LONG POST

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

The opinions expressed on this blog represent the author’s own views and not necessarily those of FibroFlutters, fibrofly73 or any other author on this website. We encourage you to share your own views in the comments section.

Our sharing of these articles and posts does not necessarily mean endorsement of them, and we recommend that you check for validated sources and peer reviews. 

It also does not mean that we are affiliated with anyone unless it is clearly stated.… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

The Celiac Scene Newsletter | 01 March 2018

New!  The Celiac Scene Newsletter | 01 March 2018 The Celiac Scene Newsletter Why not visit the website and sign up for their newletters and check out their guides > Home Page theceliacscene.com/  About The Celiac Scene  >>> theceliacscene.com – about ‘Ellen Bayens’ is the Founder and President of The Celiac Scene™, the go-to gluten-free… Read More The Celiac Scene Newsletter | 01 March 2018

#ChronicIllness Evening Post: A selection of online health related newspapers/magazines

The opinions expressed on this blog represent the author’s own views and not necessarily those of FibroFlutters, fibrofly73 or any other author on this website. We encourage you to share your own views in the comments section.

Our sharing of these articles and posts does not necessarily mean endorsement of them, and we recommend that you check for validated sources and peer reviews. 

It also does not mean that we are affiliated with anyone unless it is clearly stated.… Read More #ChronicIllness Evening Post: A selection of online health related newspapers/magazines

#MEACTION news

New!  Participate in the 2018 #MillionsMissing with #MEACTION  |  7 March 2018 Participate in the 2018 #MillionsMissing with #MEACTION A map of #MillionsMissing registered events will appear over the next week for you to join and RSVP! Keep checking millionsmissing.org for updates.    Latest!  #MEACTION Daily Digest: Urgent Congressional Action! Ask your Rep. to Sign Letter for… Read More #MEACTION news

Pharma / Science / Tech / AI – News

Latest!  BioPharma Dive |  Marketing Newsletter | 7 March 2018 biopharmadive.com | Marketing Newsletter   Latest!  BioPharma Dive |  Newsletter | 8 March 2018 #pharma  #pharmanews #clinicaltrials #patientcentricity #R&D #science biopharmadive.com BioPharma Dive |  WEEKENDER Newsletter |3 March 2018 BioPharma | WEEKENDER newsletter   About BioPharma Dive:  www.biopharmadive.com/about/ pharmaphorum Top Stories  |  3 March 2018 Headlines: Dangerous inflammation prompts worldwide withdrawal of MS drug… Read More Pharma / Science / Tech / AI – News

NEW POLL | When considering clinical trials, where do you think as a patient you should be involved?

NEW POLL Okay, as you know Sonia a fellow Founding Five Member and myself are off to the big pharma conference on 12th – 15th March, in Barcelona, to represent patient voice, especially regarding the changing face of pharma and it becoming more patient-centric. One of things companies are having to consider is where to… Read More NEW POLL | When considering clinical trials, where do you think as a patient you should be involved?

Fibromyalgia / CFS / Anxiety & Depression / Invisible Illness: The vicious circle of ‘Catch 22’ & Setbacks versus Flares: Which is which?

Do you have Fibromyalgia, Chronic Pain, Chronic Fatigue, Fog, Depression and/or Anxiety or any other Illness where you flare from time to time and one illness rubs onto another one making you feel worse? Do you know the difference between a flare and a setback? Many people don’t and often treat themselves for a flare… Read More Fibromyalgia / CFS / Anxiety & Depression / Invisible Illness: The vicious circle of ‘Catch 22’ & Setbacks versus Flares: Which is which?

Alternative Postings, essential oils ‘Subscription Box’, The 5 best oils for Migraines, Aromatherapy Newsletter,

Are you looking for something alternative why not pop along to Julie’s blog and check out ‘Simply Earth – An Essential Oil Recipe Subscription Box’ and find out which 5 oils are best for Migraines and then learn about Acupuncture as an Alternative therapy/treatment. Counting My Spoons | Simply Earth – An Essential Oil Recipe… Read More Alternative Postings, essential oils ‘Subscription Box’, The 5 best oils for Migraines, Aromatherapy Newsletter,

Musculoskeletal related Matters

Arthritis Foundation |  Fitness & Nutrition | Get Workout-Ready With These Tips | 28 February 2018 Get Workout-Ready With These Tips Subscribe and sign up for Arthritis Today Magazine and newletters.  Lots of useful help including ‘Tools and Resources’ to help you to manage your life with Arthritis! http://www.arthritis.org | Tools & Resources The Arthritis… Read More Musculoskeletal related Matters

AWARENESS Video | The 28th February 2018 ‘Rare Disease Day’ video! 

AWARENESS Video | The 2018 Rare Disease Day video! ‘Show your rare. Show you care’ – Rare Disease Day slogan RARE DISEASE AWARENESS VIDEO  >>>  Show your rare. Show you care! This year’s video features patients and family members, researchers and doctors who show their rare. “The video shows the wide range of people involved in… Read More AWARENESS Video | The 28th February 2018 ‘Rare Disease Day’ video! 

Are you aged 16 -25 and have #fibromyalgia? Would like to help with a PhD study??

Opportunity for young people aged 16 to 25 years old with #fibromyalgia to take part in and inform a @Cambridge_Uni  #PhD study looking at young people’s perspectives on the impact of their long-term health condition. Follow this link to take the survey and help to #fightfibro and help #research PhD study looking at young people’s perspectives… Read More Are you aged 16 -25 and have #fibromyalgia? Would like to help with a PhD study??

“Wow!” Thanks for attending, what a great opening meet up for 2018 yesterday

“Wow!” I think that is a word that a lot us we will be saying for a few days after our opening meeting for 2018 yesterday in Sunderland UK, for Chronic / Invisible & Rare illness. FibroFlutters always post a thankyou to the folks that attend out meet ups because we know that the illnesses… Read More “Wow!” Thanks for attending, what a great opening meet up for 2018 yesterday

Invest in ME Research – IIMEC13 Invest in ME Research Conference 2018 News

Exciting News for the IIMEC13 Invest in ME Research Conference 2018 |  Professor Davis is on his way to London, June 2018, and will be joining the other international experts present to work toward; better understanding ME, and more collaboration in research into ME. Source: Invest in ME Research – IIMEC13 Invest in ME Research Conference… Read More Invest in ME Research – IIMEC13 Invest in ME Research Conference 2018 News

Volunteer with The Ehlers-Danlos Society | Volunteer Opportunities (2018)

Volunteer Opportunities (2018) Volunteer Job Opportunities Photography Videography and Video Editing Graphic Design Editing Campaigns Online Moderator Patient Advocate Grants/Trusts Events EDS Conference Volunteer Jobs Artistic Talents Writing   If you think you can offer support as a volunteer please click the link for more information and if you decide it is something you would… Read More Volunteer with The Ehlers-Danlos Society | Volunteer Opportunities (2018)

Hydrotherapy – Heaven or hell? Part Two – session one / week one

Hydrotherapy – heaven or hell?  is a discussion that I have often read in other blogger’s pages, online support groups and also physically discussed with other people just like me who live life with chronic pain, hypermobility and chronic illness, within my own support group FibroFlutters.  For me it is something that I am still… Read More Hydrotherapy – Heaven or hell? Part Two – session one / week one