I hope you won't mind my clarifying that my user name here and the name of my website is "ME agenda" not "MEAction".
When the UK patient organisation Action for M.E. was first set up it was known as "ME Action" then later had a change of registered name.
We also have a UK Yahoo! Group list called "ME Action UK" which is run by Stephen Ralph. Stephen maintains a personal website of the same name.
Neither ME Action UK or ME agenda are any form of organisation and the respective sites are maintained by individuals.