The Development of a Consistent Europe-Wide Approach to Investigating the Economic Impact of (ME/CFS): A Report from Euromene Apr 2020

[Sly Saint]

The Development of a Consistent Europe-Wide
Approach to Investigating the Economic Impact of
Myalgic Encephalomyelitis (ME/CFS): A Report from
the European Network on ME/CFS (EUROMENE)

Authors
Derek F.H. Pheby 1,* , Diana Araja 2, Uldis Berkis 3, Elenka Brenna 4 , John Cullinan 5,
Jean-Dominique de Korwin 6,7, Lara Gitto 8, Dyfrig A Hughes 9 , Rachael M Hunter 10 ,
Dominic Trepel 11,12 and XiaWang-Steverding 13

Abstract: We have developed a Europe-wide approach to investigating the economic impact of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), facilitating acquisition of information
on the economic burden of ME/CFS, and international comparisons of economic costs between
countries. The economic burden of ME/CFS in Europe appears large, with productivity losses
most significant, giving scope for substantial savings through eective prevention and treatment.
However, economic studies of ME/CFS, including cost-of-illness analyses and economic evaluations of interventions, are problematic due to dierent, arbitrary case definitions, and unwillingness of doctors to diagnose it. We therefore lack accurate incidence and prevalence data, with no obvious way to estimate costs incurred by undiagnosed patients. Other problems include, as for other conditions, diculties estimating direct and indirect costs incurred by healthcare systems, patients and families, and heterogeneous healthcare systems and patterns of economic development across countries. We have made recommendations, including use of the Fukuda (CDC-1994) case definition and Canadian Consensus Criteria (CCC), a pan-European common symptom checklist, and implementation of prevalence-based cost-of-illness studies in dierent countries using an agreed
data list. We recommend using purchasing power parities (PPP) to facilitate international comparisons, and EuroQol-5D as a generic measure of health status and multi-attribute utility instrument to informfuture economic evaluations in ME/CFS.

https://www.mdpi.com/2227-9032/8/2/88

(This article belongs to the Special Issue ME/CFS – The Severely and Very Severely Affected)

 

[adambeyoncelowe]

Have they drafted the pan-European checklist or are they leaving that for others to do?

 

[ME/CFS Skeptic]

@FMMM1 this might interest you

 

[adambeyoncelowe]

The checklist is attached. It looks a bit like the CCC in the loosest sense.