Good morning check out my [DATE] #chronicillnessVOICE DAILY Newsletter via @Nuzzel [HEADLINE] [URL]
#chronicillness #invisible #rare #MentalHealth #ChronicPain #MSK
#patient #health #medical #research #pharma #advocates
Hello + welcome to today's issue featuring a fabulous blog post from Kathleen about her first ever dog show competition as a disabled handler, great real life read!
Plus, more articles to keep you going
Wishing you wellness + great weekend
The Invincible Summer
– Nov 22, 2019, 4:37 PM
Since the summer, time has seemed to fly by especially fast! We had a pretty good summer! We spent lots of time sitting outside in the sun, going for walks with River, heading to the beach, and working with my boy. Training with River was a big…
FibroFluttersOne thing that really made such a big difference for me was how supportive and encouraging everyone was, from the judges to people helping out to other handlers & their friends and families.
21 November 2019, Copenhagen, Denmark The “WHO status report on prison health in the WHO European Region” presents an analysis of data collected on the health status of people in prison and prison health systems for 39 countries in…
FibroFluttersThe report reveals that the general state of monitoring and surveillance systems for health in prisons is poor. This affects the development of evidence-based policies that effectively target the needs of the prison population.
– Nov 16, 2019, 3:39 AM
Thinking about something in endless circles — is exhausting. While everyone overthinks a few things once in a while, chronic over-thinkers spend most of their waking time… Welcome to a place where words matter. On Medium, smart voices…
FibroFluttersOverthinking can take many forms: endlessly deliberating when making a decision (and then questioning the decision), attempting to read minds, trying to predict the future, reading into the smallest of details, etc.
Summary: Findings debunk the common theory that attention is the only cognitive function affected by sleep deprivation. Lack of sleep also hinders a person's ability to complete activities that require following multiple steps. Source: Michigan…
FibroFluttersMichigan State University’s Sleep and Learning Lab has conducted one of the largest sleep studies to date, revealing that sleep deprivation affects us much more than prior theories have suggested.
~ Contact: Alex Wyke ~ Tel: +44-(0)7960-855-019 ~ Email: email@example.com PRESS EMBARGO: London, October 15th, 2019 6AM GMT For sample pages go to report CONTENTS (see below) “A significant proportion of patients communicate only in a…
FibroFluttersIMPROVING DRUG-TREATMENT INFORMATION
An evidence-based guide for pharma on what patients expect from pharma as defined by 2,000 patient groups
(published October 2019)
The final UK Standards for Public Involvement, which aim to improve the quality and consistency of public involvement in research, are released today. Health and Care Research Wales formed a key part of a UK-wide partnership to develop the…
FibroFluttersThe Standards set out six areas for developing good quality public involvement. They encourage approaches and behaviours that are the hallmark of good public involvement such as flexibility, sharing and learning and respect for each other.
As we reported at the time, on 1 November 2018, cannabis-derived medical products were placed in Schedule 2 of the Misuse of Drugs Regulations 2001. On the face of it, that provided official recognition in the UK that these products have a…
FibroFluttersNICE say that people with chronic pain shouldn't be prescribed drugs containing THC (delta-9-tetrahydrocannabinol), the main psychoactive ingredient in cannabis. Amounting to a blanket ban on NHS-prescribed medical cannabis for chronic pain.
Patient advocacy definitely feels like a second job, much of the time. (or full time job. with overtime.) Advocates and patient leaders who have stepped up to this role are working as marketing and communications professionals, whether the realize…
FibroFluttersWithout realizing it, patients are masters at finding and filling information gaps. Without realizing it, they are growing into marketers, and creating their own personal and patient brands.
National Institutes of Health (NIH)
– Nov 22, 2019, 7:19 AM
The Accelerating Medicines Partnership (AMP) program for Parkinson's disease (PD) has launched a data portal to provide de-identified information collected from 4,298 PD patients and healthy controls to researchers working to develop effective…
FibroFlutters'“One important part of this platform is that, in addition to providing a place for storing complex data, we are also providing the tools to analyze that data within the platform itself,” said Debra Babcock, M.D., Ph.D...'