I agree with what @Andy has said i.e. basically the situation is an organised mess. I think part of the reason reflects Vicky Whittemore's statement at the Invest in ME Conference (2018?) i.e. the biomedical pathway hasn't been identified therefore there are no drug targets etc. So anything goes; Alain Moreau (University of Montreal + OMF) uses the example of the Indian parable of the six blind men and the elephant to illustrate the current position re cause of ME - check it out online. For all that there are some notable research groups e.g. OMF - you've probably heard of Ron Davis (his son is very ill) and organisations which fund research e.g. OMF & Solve (seems to change but it's either Solve ME/Solve CFS/Solve ME/CFS --- even the names ME/CFS are contentious!). Also, I'm slightly biased but ME Action are a lobbying organisation; they have a small presence in the UK and (slightly smaller) in the EU - consider volunteering - here's an example of their lobbying https://www.meaction.net/2019/10/03/me-activist-testifies-before-eu-parliament/ There's a bunch of free to view videos e.g. this year: September - OMF Conference/June - Invest in ME Conference (London)/April - NIH Conference/March - EMERGE Conference. There has been some controversy (understatement) regarding the psychological approach adopted in the UK & Denmark (and other places). You have a skill set -- don't be shy about using it & your difficulty in grasping this mess, is yes because it's a mess.