Actually there are quite a lot of scientists trying to help move knowledge and treatment of ME forward. They are keen to help. It is NICE who are continuing to promote CBT and GET to health professionals, thanks to the long-term influence of psychoquacks. The health professionals in turn are pushing this pointless treatment on patients.
Leeds CFS/ME clinic have a bad name amongst the more knowledgeable ME sufferers, at least since they dumped proper science (immunology).
Action for ME also have a bad name due to their long association with psychoquacks and their continued failure to criticise psychoquackery such as the PACE trial.
I emailed them soon after they published a summary of findings from the trial, with a preliminary critique. They never even replied.
Leeds used to have GET mentioned on their website but I see they have removed it.
Here is their treatment page. They do mention 'rehabilitation' a lot, which I have previously found to mean CBT/GET.
There is more info about the clinic
here and
here. There seems to be an overwhelming emphasis on
fatigue.
BTW a lot of people get what appears to be a placebo-type response to psychoquackery, only to have a serious relapse, sometimes a year or more later.
We need to address the underlying causes scientifically.