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 your power to create or bring about
change, taking responsibility for your life and your actions, frees you to live in the present
(From "Severe ME : Notes for Carers" to be published very soon.)