If a person is selected as the sole patient representative on a research review panel, albeit alongside a well known and respected carer as the second patient representative, then surely it is unsurprising that people who are allegedly being represented will ask questions.
I think it is beholden on the person/organisation who selected that individual from all the possible patient representatives in the world, especially in opaque circumstances like this where there was no open application process advertising the role, to make a clear and public statement about the selection process. Why was there no open application process, with qualifications and experience requirements listed and with closing date specified, and the qualifications that made the selected individual suitable to uphold the patient priority for detailed understanding of and scrutiny of the scientific validity of the whole review process and product?
So far all we have been told about the selection of one particular individual as part of the team writing the review is that she was selected because she is not an activist and has a diagnosis of ME.
I think if the patient involvement process is to be meaningful, clarity of process and open applications are the least we can expect.
I would like to know whether the patient and carer reps on the review writing group were selected by Hilda or by Cochrane who presumably selected the rest of the review authors. And how Kay's name came to be put forward, given that her 'qualification' for the role seems to be 'non activist'.
Kay, if you are reading this, I have no personal opinion of you, but I think it would help clear the air if you were to join us here and tell us about how you came to be involved, and anything you want to share about your interest in and views on the research you will be helping to review. I am sure, as a fellow sufferer you would be welcome here. Our concerns about your selection are about the selection process and criteria, and why others were not openly invited to apply, not about you personally.