Bibby and Kershaw (from Sheffield Hallam University) prepared an academic report on the economic cost of ME/CFS to the UK economy using information from AfME and MEA:
Bibby J & Kershaw A. (2003)
How much is ME costing the country? Report prepared by the Survey and Statistical Research Centre, Sheffield Hallam University
BBC report at the time:
http://news.bbc.co.uk/1/hi/health/3014341.stm
The £3.5 billion per annum figure (loss of taxes, DWP benefit payments, GP and hospital costs, prescription only drug costs etc) was later updated but obviously remains very much a guesstimate
Back in 2015, the MEA decided that we should ask some health economists at LSHTM to produce some updated research on economic cost of ME/CFS
We had meetings etc and a research grant application was prepared
At around the same time, David Butcher from OHC gave a presentation to the Forward ME Group (FMG) about a research proposal on economic cost that would be carried out by 20/20 Health Group
FMG decided not to get involved and I don't think any of the FMG charities got involved on an individual basis - the MEA did not
But as the OHC was going to go ahead in any case, the MEA decided not to proceed with the LSHTM study
Dr Charles Shepherd
Hon Medical Adviser, MEA