PAUSE
This year will bring some changes which mean I need to step back from my research and advocacy work. This work has covered a number of different topics and this is reflected in the sub-heading of this blog “
Law and health; due process and civil society“. However, my main focus has been on issues facing the international community of people who live with the illness
myalgic encephalomyelitis (ME) – sometimes also conflated unhelpfully with the condition “chronic fatigue syndrome/CFS”.
I have lived with ME since
1981 (possibly longer) and began to learn about its history and pathology from
1989, when I was first diagnosed. In
2009, I started increasing the scope and range of my research and in
2012 I set up this blog in order to publish my work on the so-called “
Secret Files on ME“.
Starting this blog was not a planned decision but rather a rapid response to some misinformation about the “Secret Files” which was circulating online (how little has changed). Since then, I have used it as a platform to explore and publish more information about a variety of topics. As is the case for all advocates who themselves live with ME, the amount of work I have been able to achieve has been severely restricted by the illness.
For more detail about my qualifications and experience see the
About section of this blog.
Changes
My husband and I have been planning for some time to move from the UK to a warmer climate
(see my post “Ice Cream and Hypothermia” for why that is). We are now at the stage where our combined age and health issues mean that we need to do this very soon. Having laid some of the groundwork over the last year, I now need to direct my already limited resources on making the move and so I will be unable to continue my close involvement in ME advocacy work.
I will not be giving up my work completely and there may still be more blog posts in the future. I will continue to monitor events and progress relating to the illness and I intend to keep open the channels of communication which I have established with other advocates in the international ME community and which I value greatly.
Where to go now for updates on the main topics featured in this blog
I have covered a number of different topics here. You can see them in the list of “
Categories” by scrolling down the right-hand sidebar. Overall, I have written about three main subjects:
- The Secret Files on ME: this is where the blog started. I completed my work on getting the files opened up and made publicly available and you can read the story in the posts in that category. You can download the actual files from The Secret Files Unwrapped Part 1: the importance of fair and accurate records and The Secret Files Unwrapped Part 2: Control, not Collaboration (one file per post).
