Very nice of them to finally provide an approximation of the percentage of trial participants who actually had ME
RESULTS:
The most statistically significant and clinically recognizable model comprised five subgroups. The largest, 'core' subgroup (33% of participants), had relatively low scores across all domains and good self-efficacy. A further three subgroups were defined by: the presence of mood disorders (21%); the presence of features of other functional somatic syndromes (such as fibromyalgia or irritable bowel syndrome) (21%); or by many symptoms - a group which combined features of both of the above (14%). The smallest 'avoidant-inactive' subgroup was characterized by physical inactivity, belief that symptoms were entirely physical in nature, and fear that they indicated harm (11%). Differences in the severity of fatigue and disability provided some discriminative validation of the subgroups.
I know your comment was slightly tongue in cheek Valentijn. But I don't think we can conclude anything about how many of the PACE participants had ME from this categorisation.
In my family sample of three (we all got ME at the same time), two years after onset, my daughter would fit in to the 'core' subgroup as she was only mildly affected and continuing with school and sport.
My son and I don't have mood disorders (although I don't know how the PACE people defined mood disorders) but it is quite possible to be diagnosed with a mood disorder and have ME. It has been (incorrectly) assumed at times that my son has anxiety about attending school.
We both have digestive system issues and joint and muscle pain - so we could fit in to the 'functional somatic syndrome' group.
We have many symptoms, so we could fit in to the 14% combined features group - again depending on how this was defined.
We aren't physically inactive but can't do what we did before. I strongly believe in a biomedical cause but my son periodically thinks that if only he could get fit he would be ok.
So, I actually have no idea how PACE would have categorised my son and I. But I suspect that all three of us would not have been categorised in that final 11% 'avoidant-inactive' subgroup. I think most people in that group would actually be better described as 'severely affected and knowledgeable'.
These PACE categories don't increase the understanding of ME. They also don't tell us how many PACE participants actually had ME.