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Review of: The Concept of ME/CFS
Affiliation
Dear Jonathan,
I have read the commentary “The Concept of ME/CFS” with great interest, and I am happy to congratulate you on this focused and pointed article. A good comment provides both a general overview of the current concept of a disease as well as a personal opinion, and your comment meets this challenge! While some opinions are certainly debatable, I see no obstacles to publishing the manuscript. Rather, it is an invitation to discuss the best concepts and terminology and their use in clinical practice and research. It may well be that the needs differ and that the use of a certain term in clinical care is advantageous, while the use of a similar ‘umbrella term’ may stand in the way of a pathophysiological understanding in clinical research. This option could be given some more space in the text to allow the other side to have its say. Otherwise, however, I am curious to see how the article will be received by the dedicated community and how it will contribute to the collegial discussion.
Best, Thomas
Comments
Dear Thomas, Thanks for the very relevant points. I don't actually see this as an issue of 'other sides' though. I spent most of my career working on the background immunology of rheumatoid arthritis. Coming to an understanding of that and how to treat it (with B cell depletion) was crucially dependent on a good clinical syndrome concept. Once we had come to see the clinical picture as involving 9 anatomically distinct features we were able to identify a single mechanism that, for complicated but precisely identifiable reasons, accounted for those 9 and no others. I see a precise clinical syndrome concept for ME/CFS as needed in the same way in order to interpret biological findings when we have some we can rely on. (Hopefully, ongoing GWAS and proteomics studies will give us some leads.) Everyone wants a pathomechanistic concept for the illness that destroys so many people's lives - of course. But there is always a danger of assuming that the keys will be under the lamp-light. I see so many colleagues looking in what may well be the wrong place.