Kati
Patient in training
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Another comment worthy of mention, from professor Carolyn Wilshire:
I’m astounded by this Jim. There are so many layers to it I don’t know where to start. At the top of it are some huge ethical questions. Are we to consider members of minorities “conflicted” when they do research related to their group, and those outside the group to have no conflicts? Of course not, both groups will have different biases.
There’s also the issue of whether a health issue or disability can constitute a COI in its own right. I would argue that bias of any kind cannot arise directly from a person’s diagnosis but only indirectly, through their ideologies and motivations. And of course, these things affect the work of the healthy to an equal, if not greater, extent. The healthy researcher is likely to be influenced by their own theoretical perspectives and their desire to advance their careers. The patient researcher, on the other hand, may be more motivated by a desire to relieve the suffering of patients. Viewed in this way, having a patient author on any clinical research study should be considered an asset.
But of course, in this particular complaint, there is a more sinister undercurrent – the implication that patients with CFS are psychologically dysfunctional, and so incapable of reasonable reflection on their illness. This idea rests on so many unsubstantiated assumptions I could not list them all here. And such insinuations are clearly unbecoming of professionals claiming to work on behalf of patients.