I think that intellectually it's best for us to be honest and aware of how much uncertainty there is around ME/CFS, but the problem is that it's difficult to motivate people to campaign on 'uncertainty', which can push advocacy groups to take positions which are then difficult to defend. If we just have a tiny number of patients who are wrongly certain about something, and outraged by the justified of uncertainty of others, that can make successful advocacy much more difficult. I think that us humans can like to imagine we know more than we do, and fall into flitting between different unsupported beliefs rather than accepting how ignorant we are, and that might be one reason why many in medicine like the way PACE provided them with things they could confidently assert were 'evidence based' treatments. Maybe we could try to convert widespread patient concerns about PACE to a movement that pushed for greater honesty about medical ignorance and uncertainty? Such an approach would have to be carefully done to ensure it was not something that could be co-opted by Wessely & co. Actually, I doubt it would work. IMO: hammering PACE and all the problems around it is still the area of advocacy likely to do the most good. Try to use that to push for wider reforms in how UK science and medicine engages with evidence, patients, and external critics - hopfully that will lead to improvements in the long-run. I guess that politicians will often have to make decisions which lead to peoples death in one way or another. Rare examples of deaths aren't normally enough to change policy unless there's a really quick and easy fix. It could still be worth mentioning an example of the most extreme cases. Thanks - oops.