2. Communication. You say information has been out there in the public domain regarding this. If we are being asked to support this why are we then expected to dig out the information ourselves - would you expect to do the same if you were asked to support something in your professional capacity, or would you expect to have your inevitable queries answered by the person asking for your support? The implicit message that we are getting at the moment is that we shouldn't worry our little patient heads about this, the grown-up scientists have done all the thinking for us and we should just sign the 'patient support' cheque.
I agree with what AndyPR has said regarding the poor communication and lack of information that has been given to patients. It feels to me like patients are still seen as a tool and not a partner. The CMRC wanted their support but invested very little in making sure the study would be acceptable to patients. I know that AfME might not have raised any concerns about the BPS lot because they have a history of letting patients down, but I find it hard to believe that the MEA and ME Research UK didn't speak up and point out patients would not accept their involvement. Perhaps they did not speak up enough though, who can say?
The CMRC also failed to make sure appropriate information was available to patients, to enable a proper informed decision. That's worrying to me because again it suggests they don't see patients as partners but as a tool. So when the study actually starts and patients are being enrolled, are they going to be properly informed? Or are they just seen as lab rats to be coaxed into doing what the researchers want them to do?
I think there has to be a big change in the way ME/CFS research is done in the UK when it comes to attitudes toward patients. It's no good ticking the box that you have an ME/CFS charity on board, which no doubt gives the study extra points in funding applications, if all it really is is ticking the box. Most patients in the UK who are informed, which is only a portion, are still furious with AfME over their part in PACE, so the charity is not representative of patients. PACE claimed to be endorsed by patients because of AfME's involvement but I think everyone in the world can see patients won't accept being left out in the cold and having someone misrepresent them.
What is needed is proper engagement, and it would be good if this project really embraced that rather than paying lip service to it. That means actually acting on what patients say, not just ticking boxes and listening then ignoring them. There is an opportunity here to make this study genuinely endorsed by patients, but you don't get that without meaning it.
And hovering over everything else is the spectre of the PACE trial. We, as patients, are being asked to ignore everything that has gone before in regards to research for ME in this country, while those directly involved in PACE, Peter White, and those who use the bogus results of the PACE trial to support their work, Esther Crawley et al, are allowed to sour this project by their very presence. So far, no good reason has been given for their inclusion in a biomedical research project, they are adherents to the BPS model of this disease, if they are involved then I believe we have a right to assume that they will want to fit this study into their unscientific model. They have to go.
I agree with AndyPR, they have to go. If those running this study try to keep hold of these two then what will happen is patient opposition will simply increase. PACE was a turning point in the community, and patients decided they simply had had enough. Patients will not accept these people who have said such awful things about them, promoted harmful treatments, promoted a model of disease that blames patients, carried out piss-poor research, supported recognised quack treatments, made misleading, and even completely false, claims about research...the list goes on.
Probably it's the experience of others in the project that these two are both charming people and they can't see what's wrong with having them involved. I understand that. Getting rid of them may be personally difficult. But patients judge them by the things they have done and the things they have said, and how that has impacted patient lives. Let's not forget, that is what this is about: patients. Or it should be. It is a study on a disease that patients suffer from. Well, patients say no to having these two involved, so it's important to take heed of that.