IS: What do you think of the consequences of this where you have editors
looking at withdrawing a review of research, do you have scientists stepping back from doing the research itself?
KG: Well I think, I think its er, it’s really dangerous, I mean, the thing about this particular situation is, these are, as far as I know, the only two evidence based treatments that exist. So my concern is that if these treatments were not available anymore that there would be no treatments for people with Chronic Fatigue Syndrome, and I think that given that there is an evidence base for moderate effectiveness I think that would be potentially quite serious.
IS: But this is not just happening in the field of Chronic Fatigue Syndrome.
MS: Um, but as a phenomena, this is happening across a number of fields of science, and very important areas like vaccination.
I think it is a challenge for how we communicate science, because if our usual systems of peer review and dissemination are to be altered by essentially pressure groups, that will mean that the information available to the public will not reflect the science, it will reflect the interest of pressure groups. And if one’s passion is about science I think that is a cause for concern.
IS: A lot of this work is publicly funded and presumably that means that the public have some input at some point along the way. Where do they come in? Where does the public voice, which presumably includes campaigners, where do they have a like a legitimate entry point for discussing this, and steering this work? And where do they maybe not?
MS: I think that most people that do health research are used to and indeed welcome and, are required to in many cases, involve members of the public and patients in their research and that’s in formulating the questions, it’s in designing the studies and making sure they’re suitable for the participants, and its interpreting the result, their results, and it’s indeed in helping disseminate the results. So that’s really er good practice now and I think most people would do that.
Clearly it’s also quite reasonable for the public and campaigners to criticise research when it’s published. And the standard way we have of doing that is to write a letter to the journal that is sounding a little antiquated now but that is our system, or they can write blogs, and so on.
I think where the line is crossed for me is when they campaign to have research removed from the public record because it offends them in some way. And I think, that for me is the line that’s too far.
IS: What are scientists to do, do you think, in situations like this?
MS: I think it’s difficult. I hope that scientists would on the one hand listen carefully to criticisms made because sometimes they might be good ones, um but at the same time stand up for the conclusions of the data, and not allow themselves to be silenced or swayed just because someone’s shouting. I think it’s a challenge across science and it’s one we’re gonna have to work out how we deal with it.
IS: And what about patients in this? Because, for a patient going online and looking at CFS, ME, things come up on the PACE trial things come up on the Cochrane review, I don’t know how a patient is supposed to understand what is right and what is wrong.
MS: Well I think you’ve put your finger on the nub of this whole issue.
Is, if the information becomes so confused that patients and indeed physicians don’t know what the right treatment is, then patients can’t benefit from treatment that has been found in research. I think it is very important just to reiterate the point that my colleagues that run clinics for people with Chronic Fatigue Syndrome tell me that most people they see are quite happy to undertake these treatments and that the people campaigning do not represent all patients. They represent a smaller group of people, and it’s really important that the campaigners, to my view, don’t stop people who would like to have these treatments, from being able to have them.
IS: So how much say should the public have in science? I think we can all agree that scientists can do more to engage with the public. And, as the public we need to take more interest and discuss the research we want.
The question is how?
Chronic Fatigue Syndrome is a debilitating condition that has an enormous effect on peoples lives. Clearly a better understanding of the illness is needed to better help those affected, and the only way that will happen is with more research.
