If you have not already done so please ask your local MP to attend the All-Party Parliamentary Group on ME awareness group's drop in session on Wednesday May 11th. This will hopefully help raise awareness of the condition and it's lack of support amongst our MP's who are ideally placed to do something about it.
You can do this by using the template letter provided by Action for ME as per this post
facebook.com/actionforme/ph...
It's easy enough to do, must be because I have, and the more we can raise awareness the better so please share and encourage as many people as you can to help. Hope you feel up to giving it a go.
Good luck and Gentle hugs to all, Margaret.xx
ME research of note: Contrasting ME versus CFS or 'CFS/ME' by Leonard A. Jason et al
Living with ME/CFS - as a partner. 
Newbie - CFS
At my wits end with CFS
Who diagnoses ME/CFS?