Hi Timaca,
I have a suggestion. I realise you are probably after suggestions about the website but I leave my post up as I hope it may have some effect.
I have quickly read through the Stanford homepage site and noticed that although there is a focus on PATHOGENS I could not see a reference to family studies, in the sense of looking at associated disease patterns, epidemiology, transmission and that sort of thing.
I think there is AS MUCH TO BE LEARNT about this disease from looking at patterns of spread and illness in families as there is in focusing down on possible causal microorganisms.
I have followed all the recent debate on whether XMRV can be found by PCR and the latest negative research findings.
WHAT IMPRESSES ME MOST about the new impetus to research started by the WPI is not necessarily the link to XMRV which may or may not be proven, but the links they found with autistic spectrum disorders and other neuroimmune disease in families where CFS/ME exists.
This is because this observation forms a coherent picture out of a disturbing and unusual pattern in my own family.
On my father and mothers side there is no illness. I have loads of disgustingly healthy aged relatives in their eighties.
But all my mothers children, all three of us are ill. My sister and myself both developed severe CFS/ME in our early twenties, in the 1980's. We are still unwell. Our brother has Asperger's syndrome, and now, at fifty has Parkinsons disease. My sister in addition to her CFS has Hashimotos thyroiditis. We were all very healthy as children. Why this strange concentration of illness in one family? We were born in the 1950's and became ill in the 80's. There is no illness in the wider family, nor as far as I can judge, further back among past relatives.
The link the WPI makes between neuroimmune disorders and CFS deserves study because there must be an underlying cause to this pattern. If it is not XMRV it must be something else, and you need to look for the common factor and look at the larger picture and not get lost in a maze by looking only at individual microorganisms. Try to do studies which look for connections between associated disease patterns in families and also look for transmission patterns.
Keep your vision broad, that could be the clue.
You also need to study the history of this illness. I worked for one of the ME patient organisations for fifteen years and I noticed that the disease was affecting children increasingly, wheras in my generation it affected adults. THIS IS SIGNIFICANT. I was very concerned by this but I have noticed that younger researchers now take it for granted that children get CFS/ME. This assumption worries me. I am sure this is a new phenomenon. I grew up in the sixties and you never heard of children with CFS/ME then.
Because the opportunity for recognising CFS/ME as a new disease was lost (when it was new) we must not assume that the patterns we see now have always been so. We need to recognise the value of an investigation which includes an historical perspective.
I realise I have probably written off topic. Is there any way of getting this feedback to the researchers?