Tuesday, 31 May 2016

#Millions Missing global day of action for ME

'#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.

On May 25th 2016, #MEAction is a global day of action for equality for ME. ME patients, advocates, caregivers, and allies will join together to protest of the lack of government funding for research, clinical trials and medical/public education, leaving ME patients without relief'.

Demonstrations have taken/will be taking place in Washington DC, London, Belfast, Atlanta, Boston, Dallas, Philadelphia, Raleigh, San Francisco, Seattle, Melbourne and Ottawa.

We travelled up to London to support the demonstration outside of the Department of Health:
http://www.meaction.net/2016/05/29/speeches-from-the-front-lines-of-millionsmissing-l-a-cooper/ (opening speech given by the organiser of the London event).

Unfortunately many people were too unwell to attend, so instead were able to send a pair of their shoes in their place. My intention had been to read the tag on all the shoes (explaining what the owners were missing from), but I admit that after only reading three I didn't carry on as I found it just too upsetting, especially as there were over 350 pairs laid out on the pavement.

My husband's shoes to represent how much the disease affects his practise of the martial art aikido that he has been studying for over 20 years.

I spent the time handing out leaflets and talking to any of the public that showed further interest. It was quite an emotional day for me, hearing about other people's experience of the disease and how it affects them and their loved ones. I felt that it was an important event to attend, as it was a way for me to show my support and actually feel like I am able to help and take action. I think that family and friends without the disease are needed there to help on the day, and I was quite touched by the kind comments that I received at the end by other attendees.

This was the first time that events such as these have been organised for this debilitating disease and I really hope that they have helped raised more awareness.

Interview with Dr. Ron Davis at San Francisco:
(Professor of biochemistry and genetics at Stanford school of medicine, and director of the Stanford Genome Technology Centre)


Wednesday, 4 May 2016

Embracing a get better mindset

'In this talk, researcher Heidi Grant Halvorson explores the mindsets needed to ensure personal growth. Mainly, we should avoid a “Be Good” mindset — one where we are constantly attempting to prove our superiority to the world. Instead, we should embrace a “Get Better” mindset — where we always perceive ourselves as having more to learn. When we embrace a Get Better mindset, we welcome risk and are less afraid of failure, both key to personal development'.

Heidi Grant Halvorson is the Associate Director of Columbia University’s Motivation Science Center, and a popular blogger for HBR, Fast Company, Huffington Post, Forbes, WSJ, and 99U. As a researcher, she studies goal pursuit, the obstacles that derail us, and the strategies we can use to overcome them.

As a recovering perfectionist, I have found this a very helpful video.
In the past, I have very much identified my self-worth with my productivity or ability in a given task. Unsurprisingly this has led to much frustration! Instead of comparing myself with others, it's more helpful to instead think about where I am now compared with a year ago.