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The question is whether there is any reproducible evidence that shows consistent immune abnormalities. This is where the evidence is somewhat lacking there are small studies showing things but other studies showing different things. I think its one of the reasons why we need a large project to...

One of the things I liked about the IoM definition was that they made a diagnosis that would allow co-morbid disease. I think this was on the assumption that if a patient suffers PEM then the advice given should be very different from if they don't (so if someone has depression the advice may...

She may have been missold treatments by doctors. There is a drug available to help with Fibromyalgia so this may help get it under control and take a while to do this?

It looks like she tried to register under a research group title and I think that can be very hard when the group is not a university group. Sometimes those writing the rules never imaging that non-university groups would ever do research.

I don't think local groups were ever allowed but some slipped in. I'm not sure what they would consider as a legit patent group but I suspect we can count as we have a fair number of members and many active.

I think NICE were removing some organisations particularly some of the local ME groups. There rules state that they need to be national organisations. We (S4ME) are still a stake holder (or I haven't heard different) we were when the comments on the scoping document.

One of the issues in incentive structures is that academics can get away with bad work and even in the case of PACE get a lot of credit for it. Also the universities involved were very keep to put PACE up as an example of good work for the research assessment exercise (which has a big impact on...

If you go to that page and click on the name then you get to the email address: neuroscience@medsci.ox.ac.uk

I'm thinking a bit more about fit bits. The tolerance is important and needs to be much smaller than the effect being measured so if (Crawley in this case) is looking to measure 10% improvements then maybe they are not sufficient. But if a treatment is to have a large effect then the...

This work seems to have been going on for a good few years now but I've not seen any results that hint at an interesting mechanism. Also how long does the interferon last for (as a chemical in the blood) - Could it be a residual levels are remaining as a signal or is it affecting some other...

I think its important to characterize fatigue in more detail. There are the people he is looking at, say people with fatigue after cancer, people with RA, Lupus. But its not clear to me that the fatigue would have the same mechanism or if the experience of fatigue is even the same. So something...

I think they funded Smile or the feasibility study for Smile

There is an issue over the quality of the subjective measures. The CFQ is so bad its not worth the paper its printed on and the results are largely meaningless. We had patients in the PACE trial who simultaneously got more and less fatigued depending on the scoring system. We also need to...

I think there is a difference between a medical device and a device measuring activity for a trial. There will be inaccuracies but for the levels of activity needed for a meaningful improvement I think they would be fine. Certainly better than a diary. One of the issues with being a 'medical'...

I think the decision to drop recovery as a secondary outcome was made when the SAP was written. But they had not dropped to idea of a paper on recovery! But that is not clear since the SAP is for the main analysis (i.e. the main paper) and shouldn't override the protocol.

I had forgotten about it so no.

I do wonder if there are other examples of people doing this. But I assume with Smile they found a loophole and will continue to use it as they can get away with it. Those designing the system probably never thought people would do this.