ME/CFS Skeptic
Senior Member (Voting Rights)
I'm concerned for conclusions such as 'hEDS patients and ME/CFS show high symptoms overlap so perhaps they are related or the same illness' or 'POTS patients show a lot of gut issues just like MCAS patients suggesting a shared pathology, something to look into further' etc etc...What would be the danger?
Because of the way the study is set up (without sufficient care for selection bias, and without scrutiny of the validity of POTS, MCAS en hEDS diagnoses) I think such results are likely to be misleading.
Because this is a study done directly by one of the major patient organisations, I suspect that the study results will be referred to a lot and that it may determine future advocacy efforts. So that's why I wanted to raise my concern about this in time.