On first reading this, I was a little startled …it would certainly represent a new and interesting departure for scientists to propose that being the sufferer of an illness constitutes a potential conflict of interest.
It would seem to have many possible implications
1) it strikes me that this argument might rule-out patient-rating data from the PACE trial itself –CFS/ME patients are replying as ‘sufferers’ and so, might constitute a potential CoI?
2) it would seem to undermine the positive testimonials given by CFS/ME patients during the PACE trial- would this constitute a potential CoI?
3) this naïve and shockingly ‘ableist’ view implies that people might only comment on research (in an unconflicted way) if they are… ‘well’. I then wonder about people who have CFS/ME, but not yet diagnosed or those in remission …or perhaps, only those who are reported to have been ‘cured by GET and/or CBT?
3) I have never seen this curious argument made anywhere else in medicine and presumably has major consequences for the ‘no decision about me without me’ approach advocated by NHS – which presumably puts the PACE trial authors at odds with fundamental values proposed by the NHS; and the involvement of patients on NICE committees – presumably they would need to declare conflicts of interest? What about if they have close family members with the disorder?
4) sadly, such discriminatory views do seem to be quite consistent with the somewhat dismissive attitude of the NICE committee toward the CFS/ME survey data they requested for their own guideline (see Laws 2017
http://journals.sagepub.com/doi/full/10.1177/1359105317710246)
5) such a view has implications for how we would have to view all patients in the context of how they describe/construct their experience of their ‘illness’ – it seems akin to importing the
‘lack of insight’ model from schizophrenia/ psychosis into this arena – presumably the first stage of getting better would be to acknowledge one’s conflict of interest i.,e, that one is ill
6) if the PACE trial was as effective as claimed, then perhaps some might claim that a little exercise or a chat could ‘cure’ conflicts of interest
7) finally, I understand that Keith Geraghty has not hidden being a sufferer, but this approach raises the possible ‘outing’ of sufferers and the privacy afforded regarding health conditions and additional financial issues e.g. impact on insurance, work, colleagues, family
