Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group. Mudie et al. 2020

John Mac · Sep 30, 2020

Abstract
The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (EUROMENE) was established after a successful grant application to the European Cooperation is Science and Technology (COST).
This network aimed to assess the existing knowledge and/or experience on health care delivery for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in the European countries and worldwide, and to enhance coordinated research and health care provision in this field.
The EUROMENE proposal, was based on the establishment of interrelated working groups (WGs), where the participants contributed with specific knowledge and viewpoints according to their specialties and/or areas of interest.
In this paper we outline the work of a multidisciplinary team of researchers, including epidemiologists, clinicians, statisticians, biomedical scientist and heath economists, who set out their recommendations to guide data acquisition for ME/CFS research, aiming to standardise data collection and improve epidemiological research.
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https://www.preprints.org/manuscript/202009.0744/v1

Andy · Sep 30, 2020

In this paper we outline the work of a multidisciplinary team of researchers, including epidemiologists, clinicians, statisticians, biomedical scientist and heath economists, who set out their recommendations to guide data acquisition for ME/CFS research, aiming to standardise data collection and improve epidemiological research. An overarching principle of the present work was to suggest tools for collecting standardised data on the presence and severity of cardinal ME/CFS symptoms and dysfunctions that may impose a burden on patients’ well-being and health-related quality of life. To ensure scalability of the suggested assessments, including applicability in population-based studies, most of them are based on self-reports. When circumstances (both resources and needs) allow it, additional objective measurements are suggested to obtain a more comprehensive picture of ME/CFS.
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Disappointing not to see the involvement of the most important people, patients.

Andy · Sep 30, 2020

Ummm?

A poll of 750 patients by the Science For ME forum, a place for the patient community to discuss biomedical ME/CFS research, that compared the DSQ and IOM descriptions of PEM showed that most patients considered the IOM description to be more accurate (ScienceforME, 2018).
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At a guess this may be referring to Results of the poll to inform the NIH/CDC’s definition of PEM in all their future ME/CFS research.

ETA: Here is the thread where the poll was announced, Do the poll! Are the NIH/CDC going to use the right definition of PEM in all their future research? Deadline 24 January

To clarify, it's great to see the forum name there, I'm just not sure it can be accurately described as a poll BY the forum.

Michiel Tack · Sep 30, 2020

Looks like the paper is mostly about which tests and questionnaires to use when studying ME/CFS. It's probably useful to have a European consensus paper on this, to standardize practices.

rvallee · Sep 30, 2020

Andy said: ↑

Disappointing not to see the involvement of the most important people, patients.
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Very. Frankly there is little to no progress to make without. Barring massively increased funding to make up for the inherent complexity of this problem, and even then. The AIDS model is the one to follow.

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Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group. Mudie et al. 2020

John Mac Senior Member (Voting Rights)

Andy Committee Member & Outreach

Andy Committee Member & Outreach

Michiel Tack Senior Member (Voting Rights)

rvallee Senior Member (Voting Rights)

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Recommendations for Epidemiological Research in ME/CFS from the EUROMENE Epidemiology Working Group. Mudie et al. 2020

John Mac Senior Member (Voting Rights)

Andy Committee Member & Outreach

Andy Committee Member & Outreach

Michiel Tack Senior Member (Voting Rights)

rvallee Senior Member (Voting Rights)

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