rlc, your posts have been very interesting to read, and the research you've spoken about is definitely worthy of us pushing for further investigation. I admire Byron Hyde's work, and personally I'd be happy to push for the Nightingale criteria to be used for research purposes. But what I'm trying to do with this thread is something specific, and it's not necessarily to discuss what the best description of ME is, although it is helpful to have that discussion as well. The purpose of starting this thread, was to work out what consensus, if any, our whole community can agree on, going forwards, in terms of pushing for political change, in order to then improve the science. rlc, I don't agree with everything you've said... I don't agree with you when you say that PEM is not a useful criteria. I think that PEM does tend to characterise physical diseases, rather than psychological illness, so it could be useful to include it in criteria in that respect, as at least this would be a step towards getting the disease out of the hands of the psychological school which has plagued us for so long. A step in the right direction. Also, I believe that PEM related to ME might have a totally unique nature. PEM in most physical illnesses, occurs immediately that the exertion is performed and then diminishes with rest. But PEM in ME patients does not occur immediately, but has delayed onset, and can last for months or years after the exertion, and does not diminish with rest. The worsening of the malaise (i.e. the relapse) also brings with it a worsening range of weird and not so wonderful other symptoms, which tend to increase as the illness relapses. I also don't agree with you view of how prevalent ME is... All the people I know locally, have almost identical lives, and identical features to their illness. So, although many people maybe misdiagnosed, I don't personally believe that it is a majority of us. I happen to believe that ME/CFS is far more homogeneous than is often thought. But that's just a personal point of view. I accept that exhaustion, malaise and cognitive problems might be common to many different illnesses, but the nature of the symptoms and lifestyles that i see in the ME patient community around me is remarkably similar, so I'm personally not so sure that ME, as diagnosed in our communities, is such a heterogeneous syndrome as many people believe. Also, I have a friend who wouldn't qualify for a Nightingale diagnosis (as far as i understand the criteria) because he had slow onset ME/CFS, but his illness is remarkably similar to mine. So personally, I'm not so sure that the Nightingale criteria are infallible. Dolphin's post explains my thinking about the SPECT scans... That they might pick out definite ME patients with specific types of symptoms, but they might miss a lot other genuine ME patients. I can't see how you can be so certain that all ME patients would fail a SPECT scan, unless you believe that all ME patients are limited only to epidemic outbreaks of ME, where all the patients have failed the SPECT scans. This is a very limited view of ME, and one that i do not agree with. Also, many of us on the forum are now being tested positive for XMRV, which is a common factor, and could explain, for example, chronic EBV infection (which you declare is a separate disease to ME). So, i think your certainty that most of the people on this forum have CFS rather than ME, is not founded on hard evidence, but is only a theory. What I'm trying to do on this thread, is to see if there is a consensus between patients about what we would all be happy to campaign for with a united voice. I don't want to get in the way of individuals having their own strong ideas about what they want, and advocating strongly for their own preferred way forwards. But I'm interested in what practical steps we could take, politically, with a united voice. rlc, you insist that the only way forwards is to diagnose 'real' ME using the Nightingale criteria, but there are many problems disentangling what you describe as 'CFS' from 'ME'. These problems arise from a political establishment point of view, a practical point of view, and also from a patient point of view. I don't think it is the most likely first step that our community will be campaigning for with one voice. To push for the Nightingale criteria, would not be likely to gain momentum easily because hardly anyone has heard of them, whereas the Canadian consensus criteria already have a momentum behind them. They might not be perfect, but many people think they are a step in the right direction. Using the SPECT scans may or may not be useful (i don't know enough about them), but they won't be so useful to our wider community unless they are used alongside a change in the political landscape. Even if you are entirely correct with your view of what ME is, and how it should be diagnosed, if we are looking for something that we can all push for together, then we might need a less ambitious starting point, such as starting with the Canadian consensus criteria... rlc, you say that SPECT scans and the Nightingale criteria would be your ideal. But if that wasn't an immediate option, for whatever reason, would there be any intermediary step, as an immediate way of improving the situation that we have now, that you would be happy for the whole community to campaign on in order to see improvements? Reaching a consensus here wouldn't need to change your opinions at all.