Showing posts from June, 2015

Getting good at waiting.

I have just received the 4th proof Copy of Notes for Carers : quite a lot to do yet, but getting there!  It is very, very difficult, the suffering dominates everything, every moment, every second is a struggle, never mind the extra stress of missing commas, misplaced spaces or phrases that need refining! Right now, they must wait awhile.  Caring for someone with Severe ME, you get good at waiting!

Severe ME : Notes for Carers Preview


We believe in our own power to bring about change.

My wife and I have have consciously chosen not to be “poor us” victims!  We owe our survival, as a carer and partner with Very Severe ME, I firmly believe, to this decision.    It leads us to continually challenge the status quo; after more than two decades,  we do not believe, any more, that there will be a solution, if only we can find the “right expert”! We have gone out of our way to understand as much as possible the medical, political and social reality of Severe ME and take a stand for truth. We believe very much in our own combined power to take action, to bring about change. Before Linda became ill, I used teach Make Your Experience Count , self-empowerment courses at Goldsmiths, University of London. I also used to run a two-day workshop for carers, based upon the same principles called Groundwork . The last two decades have tested what I taught to its limits and beyond. Declaring that you are not - or no longer, a victim of circumstances, owning y