Founder of Health Rising and Phoenix Rising
“I’d love to have everybody involved in ME/CFS work get involved into such a consortium. I think this is a complex problem and I’m not sure setting it up as a competitive exercise is the best way to solve the problem. I think that can be deleterious to the outcome and you could get the same answer cheaper and faster by having a network of people being cooperative, where everybody shares in the ownership and the credit."
“One of the problems with this disease is that often you fail to pick up that they’re sick, even when they are pretty severely ill. As long as the person can stand up they might look pretty normal.
“My son was the same way, but if you looked more carefully there was the fact that he would stand up for a couple of minutes and get so exhausted that he had to go to bed. It’s only now that he’s so severe and he’s lost a lot of weight, that he obviously looks quite ill. And he is quite ill."
The thinking is that if we can profile individual cells without having to do the traditional cell separation, then we may find very many unusual cell types that are present in this disease that nobody knows about. So we’ve got to be able to do that in a cost effective fashion; maybe they need to be perfected a bit, otherwise we do more classical cell separation and profiling. Because we need to characterize the immune cells in terms of surface markers as well as proteins — with the proteomic aspect to this — we’ll utilize mass spectrometry but also antibody arrays.
“We also have a new technology to measure cell density looking at magnetic suspension — that hasn’t been applied fully yet but we do see some differences in patients with ME/CFS compared to normal in some initial testing, so we need to follow that up. It’s a new technology looking at magnetic fields. It’s interesting because it’s very inexpensive and very fast. And it’s just new enough that we don’t know if it’s going to pan out, but we need to take on some new technologies that might allow us to see things that otherwise we’re blind to — things that no one has looked at before.
“I consider it to be the last major disease in the world that we don’t understand yet. It’s largely been hidden by the fact that until recently it hasn’t been recognised as a disease. It should be viewed as a career builder — but that’s going to require a high IQ, to recognise that reality — if you want to get involved at the ground floor in a disease that we don’t yet know the origin and what’s going on … this is the last disease, the last opportunity.
“Some people find that kind of exciting.”