Very interesting article, Cort. It's always good to see what we can learn from elsewhere, especially when we're stuck!
And yes, collaborative networks of reseachers and clinicians has to be key.
However, I would caution there is one big difference with Alzheimer's, which has a certainty of the pathology, marked by amyloid plaques and neurofibrallry tangles. The diagnosis problem for Alzheimer's is that these signs appear later in the illness and currently can only be identified by dissecting the brain. With ME/CFS, it's still not clear if the illness is caused by a single pathology or several different one with similar symptoms (to be clear, I'm not talking about psychosocial explanations here, but different biomedical ones).
Maybe XMRV or MLVs will provide a biomarker and clarity, but maybe they won't, in which case diagnosis - and case definition - become crtitical. When it comes to standardisation I suspect that this area should be the foundations.