But, as you say later, these 60% deserve a trial just as much. If 60% had ME and 40% cancer which would you go for? Why would people with ME have more right to a trial than people with nonCCC Oxford fatigue?
Of course idiopathic fatigue patients deserve trials. But it doesn't make sense to include them in ME trials. Fatigue is
not a major problem for ME patients, unless they haven't learned to distinguish between PEM, OI, and feeling a bit worn out in general. It is very easy to confuse these things at first, because we lack a context for them. But if I look at my overall symptoms and subtract PEM "fatigue" and OI "fatigue" and sleeping-badly-due-to-pain "fatigue", I don't have any fatigue left, and I think that's pretty common for ME patients.
We generally know where our "fatigue" is coming from, even if we don't really know why. Does it make sense to study ME, non-ME OI, lupus, cancer, sleep dysfunction, and elderly patients all at the same time, because they all have something which could be broadly categorized as fatigue? I think that would be a waste of time, since these are generally very different types of fatigue with different sources, and even presenting in very different ways.
Sure, it might be fun to compare and contrast fatigue in these illnesses some day, but there is so much essential research which needs absolute priority in funding and in its time scale. No one really objects to these sorts of studies, just like we don't really object to appropriate psych studies, if the essential biological studies of ME are already underway and being funded. But the reality is that we have little funding and the research certainly isn't happening quickly. So we would rather have an intense focus on the extremely disabling aspects of the disease in the near future, instead of messing around with peripheral issues.
And PEM is the most disabling, untreatable, and mysterious symptom which we have, in addition to being the most distinctive in diagnosing the disease and/or selecting patients for research. It's not just an interesting little oddity - it's the core of the disease, or the closest we can get to it.
A trial of just the 40% ME would not be cheaper because the power calculation on the number needed to recruit would be similar.
And how powerful are the calculations going to be for ME patients when they're just a subcategory of a large "fatigue" study? Presumably it will be just as poor, with the added problems of results being watered down and fatigue results being inappropriately extrapolated to apply to ME patients. While I'm not completely opposed to ME patients being a clearly identified and analyzed subcategory of a broader study, it's far too easy for ME results to be consumed by the larger fatigue results, and to be spun by unscrupulous researchers or over-excited media outlets.
The basic point for me is that PACE is bad for other reasons. It should not be used as a reason to bin the Oxford criteria as a clinical grouping for chronic fatigue. So the suggestion that research has been held up by bad criteria does not work for me. Research has been slow for other reasons as far as I can see.
Oxford is bad because fatigue has to be the principle symptom, and CCC/ICC patients with a primary symptom of PEM are therefore very likely to be excluded by Oxford. Patients with certain mood disorders are also expressly embraced by Oxford, likely due to the authors' belief that ME/CFS is a psychosomatic disorder. It's not just a matter of Oxford being broader than CCC or ICC - Oxford largely excludes CCC and ICC patients and describes a completely different group.
Hence the PACE study is completely flawed due to using the Oxford definition, in addition to all the other reasons for which it became a farce. The authors took patients with a primary symptom of fatigue, called them CFS patients, and explained that ME patients don't really exist and just have CFS. They then extrapolated results from their special fatigue group to a different (ME) group which shares little or no overlap of characteristics.
While it might be possible for Oxford fatigue research to be honest and even useful, the group which uses Oxford has never been able to conduct research in such a manner. Quality researchers use Fukuda at the very least, and the ones with more experience in the area either use Fukuda with mandatory PEM, or they use CCC.
The use of Oxford in research has become a warning that the results contained within will be badly flawed and spun in every manner the author can manage, usually bordering on fraud if not crossing that line entirely. They've polluted their own criteria with poorly conducted research, which would be a pity if that wasn't their intention in the first place when they created Oxford.
