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Yes but the crucial thing is that even though I was careful to use ME, CFS, ME/CFS and CFS/ME appropriately in this instance, terms are commonly used interchangeably.

Without getting into a prolonged discussion about various criteria, yes and no. ME/CFS (CCC) does, CFS/ME (NICE) does, ME (ICC) does, SEID (IOM - clinical only) does, CFS (Fukuda/CDC1994) doesn't, [CFS (Oxford) doesn't but who cares, it's nonsense and for research only]. There must be a lot of...

This sort of situation has been playing on my mind. It's tough for us to take the news that the trial was negative but we have to accept the facts. What bothers me is that there is going to be an admittedly very small percentage of pwME who have been misdiagnosed and confined to our little...

152?

@Jonathan Edwards Do you recall saying on PR that Jo Cambridge's team had identified an abnormality in B cells that looked like the opposite of autoimmunity? You weren't able to tell us more at the time but did anything ever come of that?

Straw no longer grasped.

I think that I was saved from this fate because I'd been labelled with a psychosomatic illness at 15. In retrospect, I believe it was the early stages of ME. At the time, it didn't bother me to have 'psychosomatic' symptoms - I didn't reject the psychological implications - but over the next...

I'm not in a position to speculate about the mechanisms but here's my own personal experience for what it's worth. I do identify with a state of permanent sickness behaviour. It characterised a period in my early 20s when I had the flu that never ends. I felt rotten all the time and although I...

Yes, there may well have been a placebo effect but there was no placebo. Therefore, the effect can't be determined. That's for future trials. He hasn't commented on objective outcomes in the future so we can't assume he has a lack of intent. Yes, I'd prefer it if the emphasis on fatigue was...

I'm not sure if the trial has been declared null. Marky90 says that "rituximab failed to be clinically effective". Perhaps I'm clutching at straws ( :rolleyes: ) but I didn't necessarily take that to mean 'no statistically significant difference', rather that the number needed to treat in the...

Bottom line is we'll have to wait six or seven months until we find out the true response rate. If there are even just 10% genuine responders, it'll still be great news. It's another piece of the jigsaw.

Eh, not quite @Woolie I said it more simply, you put it into context.

Yes but that's the nature of self-reports. The phase III rituximab trial also relied on subjective reports but people were generally happy with the design because the treatment was blinded. This is a preliminary study so there isn't a placebo. However, the results help inform the investigators...

I was just noting the differences in response to a question!

Yes, you're right. The follow up doses were fixed at 500mg, rather than being 500mg/m2 up to a maximum of 1000mg. Also the maintenance period was 'stretched out' slightly. Phase II 'Materials and Methods http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0129898 Phase III...

I'm assuming that there will still be responders, the question is how many. What this phase III news means in practical terms is that we'll have more accurate knowledge of the proportion of responders than we did before. It means that the price of rituximab per response has just gone up. In the...

The primary outcome measure certainly looks very similar to the method they used for the phase II. I'm not (yet) despondent about the news because all we know until publication is that rituximab "failed to be clinically effective" (quoting Marky90 at PR). It doesn't mean that rituximab is not...

He certainly doesn't say 'a distinct disease of its own', that's for sure. Perhaps he means that the symptoms are real in that they are genuinely perceived but that there is no sign of physical disease. Which basically means a truly functional disease (in a biological sense) but the nature of...

I think that the aim of IiME/UCL was always to identify likely responders. Hopefully, they'll have some great data from Fluge and Mella's trial.

My interpretation? I've no idea. The trial specified primary (and secondary) outcome measures in the protocol. The primary outcome (I think I should have used the singular the first time) would be the one Fluge and Mella considered the most important. The outcomes are specified in advance to...