About Us - FibroFlutters Alternative / Complementary Therapies & Treatments Arthritis Articles Awareness campaigns Awareness campaigns, events, blogs, petitions & posters Blogs / Bloggers cancer Charities Child health chronic illness chronic pain Chronic SoMe platforms clinical trials Dementia / Alzheimers Diabetes Digital Health Disability Educational EVENTS eyeforpharma FibroFlutters Home News FibroFlutters Milestone Fibromyalgia FMAUK Food, drink and recipes Healthcare Heart Health HYPERMOBILITY im-patient Info site invisible illness JHS Join the Community Juvenile arthritis Medical Conditions / Disorders Medical Device Medical news stories Medical news stories, blogs and research mental health Musculoskeletal Neurology Neuroscience Newsletters/Papers/Magazines/Blogs Pain management Patient Advocacy Patients pharma Pharma Pharma / Science / Tech / Digital / AI Podcast Professionals Rare Research Rheumatoid arthritis Rheumatology SoMe Platforms Twitter Feed Webinar

Special edition Happy new year & ‘Happy birthday’ #chronicillnessVOICE 1yrs young| January 2019 ~ a health newsletter for everyone! #chronicillness #notjustpatients

‘Attending an event during the middle of hibernation was a little daunting but I wasn’t going to let that stop me from going. ‘
What a way to celebrate our newsletters 1st birthday

Page 4

All about Pain

Pain Alliance Europe (PAE)

Pain Alliance Europe launches a new survey on stigma & chronic pain.
One of the main “fights” PAE is leading is for the pain patient to be heard, believed and understood. The most recent survey developed by Pain Alliance Europe deals with stigma related to chronic pain and will be open until the 1st of March, 2019.

The survey that The Pain Alliance Europe (PAE) have launched is for people living with chronic pain, and their carers/family members, on the topic of pain and stigma.

Hopefully the results of this new survey on ‘stigma related to chronic pain’ will help to raise awareness of that he way the environment of the ‘patient’ may contribute to the alteration of the ‘psychological conditions’ that could be influencing the life of a patient.

The survey is available in 15 languages, which can be accessed below.

Belgium FRGreecePolandSpain
Belgium NLIrelandPortugalSweden
Cyprus GRItalyRomaniaSwitzerland DE
FranceMalta ENSloveniaUnited Kingdom 

Please feel free to complete if you feel this is relevant, and PLEASE pass on to other interested individuals.

You can read previous surveys and results via the PAE website:

Or the article introducing the survey, where you may find as well all the links to all the languages/surveys: 

Social Media 
Please retweet and share our posts throughout the whole period the survey will be online, we will post regularly. Twitter:
Facebook: LinkedIn: 

The survey will remain open until the 1st March

Societal Impact of Pain (SIP)


The SIP is a joint initiative of the European Pain Federation EFIC® and the pharmaceutical company Grünenthal GmbH that was developed in 2009.

Aims of the innitiative as explained on the SIP ‘About Us’ webpage can be seen below:

  • raising awareness of the relevance of the impact that pain has on our societies, health and economic systems
  • exchanging information and sharing best-practices across all member states of the European Union
  • developing and fostering European-wide policy strategies & activities for an improved pain care in Europe (Pain Policy).

As well as the Multi-stakeholder platform online the SIP – “Societal Impact of Pain” also has a policy discussion, and networking group, on LinkedIn.
The objective of this discussion group on Linked In is to create a platform for discussion between all involved in pain management (e.g. representatives of consumers, patients, pain specialists, health care assessors, politicians, budget holders and strategic decision makers) on pain policy related topics. In other words – all stakeholders!

Norbert Van Rooij the group owner whose interests are Governmental policy and Patiencentricity, regularly posts relevant articles and up to date information that members can read and discuss.
Norbert leads the team responsible for ‘conception, logistics and organisation’ whilst liaising with a ‘mix’ of all stakeholders including ‘scientific organisations’, ‘patient representatives’ and ‘political stakeholders’. Meaning, Norbert, & SIP, thus utilise a large network / platform that represents many differing stakeholders from many different countries within the EU.

If this sounds like it could be of interest to you then you can request to join via the button link below.
Acceptance is not necesarily guaranteed as I do not run the group!

Find out more about SIP via the link button below

Fibromyalgia Awareness via Pain Concern

Pain Concern has just released a programme of Airing Pain on fibromyalgia.
The programme focuses on the 2016 Revised Recommendations for the Management of FM, the Walk With Ease programme between the University of Aberdeen. Presenter Paul Evans also speaks to Diane who lives with FM, about her journey since diagnosis.

You can find the podcast here: 109 – Fibromyalgia | Jan 7, 12:00 PM

Page 4