Severe ME/CFS Revealed: Action for ME Survey Unveils the Severely Ill


Founder of Health Rising and Phoenix Rising
Staff member
The document is attached. I haven't read it yet but it looks quite extensive...Anyone want to do a blog?

This report focuses on the experiences of 298 people identifying themselves as severely affected (out of 2,081 total respondents with M.E.) who took part in Action for M.E.’s 2014 health, welfare, employment and education survey. Along with statistics from our initial M.E. Time to Deliver report (, substantial qualitative analysis has been solely undertaken by Dr Andrew Pates. We are profoundly grateful to Dr Pates for the considerable time, energy and expertise he has shared with us. “Responses to seven open-ended questions from the survey have been analysed separately, and combined into a data-book organised by question,” explains Dr Pates. “The main themes identified in this data-book have then been collated into a lenghty report combining data from across the different questions, of which this is a summary document.”


  • Severe MECFS Survey.pdf
    954.1 KB · Views: 248


Well-Known Member
It is painful reading. I dont have the energy for a blog but I did it would start with the title "my life stopped" and go on to talk about the problems our benefit system creates for the severely ill. There is a little that is good - the support sometimes provided by family - but it's a very bleak document and even the support some people get is coloured by anxiety about the effect of the illness on aging parents and on spouses.


Active Member
I guess I could write a blog, but I'm not sure what angle to take. The summary would be 'Life for an ME suffer in UK: utter pain and misery, virtual death, guilt, abandonment by government verging on cruel and unusual punishment, loss of friends and family, outlook bleak'. Are we looking for something a little more hopeful.....?

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