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They say that GET can be useful for 'a specific group' of patients, without specifying how such a group might be identified. Even if it has helped some, whoever they might be, its effects are unpredictable and therefore dangerous. This is an irresponsible statement they can't possibly back up.

I agree. The scale should be able to show, 'these patients don't get much PEM, but how much activity do they sacrifice for this?

May be we can avoid the problem of fewer symptoms because excessive activity is avoided, by asking how much a patient can do before they get PEM. ie, a modified SF-36 type scale. This would show the amount of activity limitation they experience in order to limit symptoms.

Thank you, Leonard. Like Trish, I have a big problem with use of the 'fatigue' word especially as a habit is creeping in in various papers diluting PEM to post -exertional 'fatigue'. My other concern is the use of frequency of symptoms in PEM. They do not occur in terms of frequency but as a...

The danger is we start defining PEM as “whatever it is that separates us from every other diseases” rather than focusing on what are the common experiences of patients with this illness in response to exertion. The fact that the " spoonie" idea is so popular suggests our issue may not be unique...

Yes, Kitty, I agree we need a more expanded list. After all, research is to be based on this.

As a trigger for PEM we also need to consider adding sensory overload. This can arise from social interaction, sound sight exposure to chemicals which are involved.

The De Paul questionnaire is inadequate to describe the symptoms of PEM. It fails to capture the extraordinary nature of PEM and misses out on essential aspects. Eg, asking about frequency of symptoms is irrelevant and misleading. PEM, as the name suggests, does not arrive on schedule but is...

Jonathan Edwards, you say, 'There was also a suggestion that there is scientific evidence for GET being bad for patients but the reality is that there is none. We simply have the experience of patients to go on. ' Given that patients' reports of their experience of GET are not generally...