I don't understand this, they will say what they want regardless.
Silence is their friend, we need to make more and more noise.
Who is arguing for silence? Why do some people seem to mistake concern for statements that go too far and can be used to make patients look unreasonable as a call for surrender. Even more annoying is the way some can mistake asserting unreasonable condemnations of people like White is some sort of brave stand against them, instead of just playing into their hands.
this fear of appearing unreasonable has stopped us from speaking up for way too long, while it didn't stop them from branding us as unresonable.
What makes you say that? It hasn't stopped me from speaking up. It hasn't stopped many others from speaking up, and making real progress in bringing attention to the problems with research like PACE. It has made it clear that it's important to speak up only in reasonable ways, but I think it's best to try to be accurate and reasonable in the claims we make anyway, so do not find that to be a restriction on how I would want to behave.
What do you mean by researcher forming a bias against us? That's a myth propagated by the very people who want you to stay quiet. If a researcher is going to read one or two posts on here and then conclude that they don't like ME patients, please let them move along.
Any researcher who comes to patient forum for random online people (bear in mind anyone can post here and pretend to be a patient) to tell him or her what to think, is a researcher not worthy of that title. A researcher who wants to know about PACE trial should read PACE trial, peer-reviewed commentaries and articles by professional journalists (like David Tuller).
Researcher who do openly frequent this forum have formed their own opinions the proper way, and then came here to communicate with patients.
I am absolutely against harrasment, and against irrationality, and against making any judgements without proof, but this fear of appearing unreasonable has stopped us from speaking up for way too long, while it didn't stop them from branding us as unresonable.
As I'm sure everyone here is aware, a great many of the people in positions of authority in British medical are not reasonable, are not commited to examining the evidence fairly, and are happy to use any excuse they can to avoid recognising that patients were right to be concerned about how people like Wessely/White/etc have treated CFS. Sadly, their opinions still matter. We can make things worse for ourselves, and worse for those trying to make progress with PACE, or we can try hard to restrict the claims we make to those that are accurate and reasonable. I think it would be best to not give them excuses to ignore patient's concerns about the work of influential and well connected researchers, as we already face enough prejudice and biases in those institutions that are standing in the way of us making progress.