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I think the latest versions have been corrected. Both the uploaded one and the URL: https://www.s4me.info/docs/PaceBriefing3.pdf

It does feel strange. Like they see it as a point where they can see what results are and tweek the protocol. I can see it is valid iff the protocol is written in terms of the first patients form a feasibility study to check that the systems work and assuming they do then move to the full study...

Given its in Bristol I assume she will be attending if not helping with the organisation.

I think one of the most useful things would be a more detailed documentation of ME. For example, the range of symptoms and how they fluctuate. I often feel that a few researchers get it but many don't but the detailed dynamics may hold a key or may need to be properly reflected in the research...

I was thinking of going since its in Bristol.

I did wonder if we should submit an abstract for a poster? Perhaps on problems with subjective outcomes and why the CFQ should never be used!

I think it does matter how wide the net is cast because if doctors can easily diagnose CFS and then basically dismiss a patient they will miss many other issues. I agree with the sub-typing issue. The thing that worries me is that doctors should not default to a ME diagnosis but do sufficient...

I think this is the most important point in response to this document. We need to emphasize it and repeat it. I would be quite happy if this was the only point we raised. It feels absolutely fundamental if they are to search for evidence and allow subjective outcomes they will take PACE, and...

I think the point is that you have additional information and a potential decision to keep or change the protocol. So the additional information (how the first x patients perform) is used to influence the decision but also the results as the patients are also included in the result.

Can you think of examples where this has happened beyond Crawley. I think there are two points here with the first being around the ethical examination and whether extending a trial is used as a mechanism to avoid detailed scrutiny. The other point is that in designing the full trial...

It does look like the ethics committee has extended it from a feasibility study to a full trial. Which seems to me very dodgy. From the Smile trial we learned that this approval goes through a sub committee rather than the full committee and hence she is avoiding a full ethical examination of...

She doesn't just dismiss us she propagates and promotes that myth. But here comments should reflect badly on her reputation as a proper scientist in that she is supporting outcome switching. I'm not impressed with her from the little I've read its not well reasoned arguments but tends to be...

In terms of the GDG I thought this was interesting

The recovery paper was a big own goal for them because it is indefensible and some trivial level of thought would have told them that. There statements around it suggested they knew this as well. I can see with the main paper they could claim they just don't understand/agree with the...

I can't see a requirement for a 20 point improvement in the recovery criteria. There is a requirement to meet the Oxford criteria but even this has been modified so for some patients the are deemed not to meet the oxford criteria if they don't meet any of the trial entry criteria. So if either...

They were collected from various social media sources so there is no way to verify them. I suspect the original purpose was to counter claims from QMUL that if a patient was identified they would be attacked and killed by a mob of angry patients. Since no one we attacked on social media

If someone blocks you then if you log out of twitter you can see their tweets or use incognito mode in the browser.

They have promised this for a while but they want to review any work done prior to sharing data so its not valid sharing. Also we have no documented evidence that any independent ethics committee object to data sharing.

They don't measure the underlying condition but the effects of the condition on activity. (Not sure about the CPET one but more validation is probably needed).

They didn't publish it it was a peer review for the paper on PACE that was submitted.