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I was not talking about members of the profession with no dealings with ME/CFS - we know those are ignorant. I have spent the last few months getting opinions from professionals in various specialties who are deeply involved in ME/CFS care - rheumatologists, paediatricians, neurologists, other...

The studies so far show an apparent difference but answering the question about how these findings relate to a mechanism that might make them more than just a correlation is a completely different aspect of science. Doing more controls will not take that any further. Doing another patient...

My comment was intended to indicate that I worry when people start talking of 'nearly 100%' as if 100% were something to aim for. Almost all clinicians make this mistake. Useful biomarkers for ME/CFS are very likely to give much lower rates. I seriously worry that this sort of combined analysis...

Jen, please stop putting out statements that you are not qualified to make. It is accepted by the vast majority of medical practitioners who have dealings in this area that there is no relation between any of these diagnoses. Neurologist-surgical complications of anything other than EDS are not...

clinically and cost-effective treatments If I am not mistaken it is a direct quote from the NICE protocol for its guidelines - in which case the fault lies in the first place with NICE but in the second place with someone happy to use a meaningless phrase just because it is regulation...

It is worth remembering that a test with 100% sensitivity and specificity is useless, because it recognises a group that you have already recognised clinically. Tests are only useful if they indicate some underlying process that might be recognised better by the test than by clinical...

Seems very fence sitting to me. The metaBlind paper is based on too poor a methodology to be worth considering or repeating in my view and Bastian agrees that the person she quotes as saying that has a good point. But then she ums and ahs.

I invented the dosing regimens for autoimmunity and I am pretty sure dosage doesn't matter very much at all. We probably give twice as much as necessary. There are all sorts of variations on the way the dosing is described but we have no real evidence it matters. If B cells are depleted, which...

I think he was but I was surprised even then that he seemed to be taking the thing seriously to some extent.

I find this quite distressing to see Dr van Elzakker apparently giving credence to this surgery. There is no science here. There are no proper trials and no data have been released publicly when they should have been long ago. I don't know what Dr Van E means about MRIs but so far I haven't...

Yes, an individual case is hard to make much of. It is the recurrent patterns that I think are more informative. The time course of change after treatment is something I always find more useful than just before and after. The extension of the phase 2 study seems to me most interesting in this...

That was the phase 3 trial, Adam. I was using the unblinded continuation of phase 2 as an indicator of a placebo response. There are no controls n this context so 'response' is in terms of relation to states at other points in time. If you have a sufficiently long pharmacodynamic monitoring...

I disagree. I am talking about whether or not we can make valid distinctions on a very pragmatic level. I don't think so. To me feeling optimistic despite no change in 'real health status' is the paradigmatic placebo situation. People with osteoarthritis get placebo responses to injections that...

Yes that was the conclusion I put in my report to NICE. And not very surprising I would have thought. If CBT had been delivered universally by people with great charisma it might have done better. There was I think an interesting comparison of CBT at King's and in Holland that suggested that UK...

The trouble is that I don't think there is any way to validate that distinction. There is no 'god's eye view' of how healthy someone actually is in a condition characterised only by symptomatology. I actually think it doesn't really matter for the discussion, which as I see it is about how we...

I think we have to take into account the fact that with repeated rituximab infusions a number of patients had saw tooth 'response' charts coinciding with the theorised period of benefit of about 6 months corresponding to the period of B cell depletion. The likelihood of chance correlation looked...

I don't follow that. If they thought they were better, and that this was due to a drug, then that counts as a placebo effect, doesn't it? I would use 'reporting bias' to cover other sorts of effects, like wanting to please the investigators.

Reporting bias is theoretically possible but having looked at the data I find it very hard to believe that in these cases people did not think they were having a very significant response to the drug. Known placebo responses may be limited but I don't think that means we know they are always...

I can only be a genuine ally of PWME if I stick to the truth and all possibilities that need exploring. Medical science does not allow us to pick and choose the truth. The truth comes out as what it is. What the psychiatric fraternity use most powerfully as ammunition is the claim that PWME do...

How can anyone tell? If we have strongly suggestive evidence of a long lasting placebo response in some cases then it has to be on the cards.