Concerning the topic of this thread, I think an apt description for it would be discussing the reliability of evidence using Sarah Myhill as an example case.
I have read a lot of Sarah Myhill's work: her books and her wiki. Although this information has broadened my perspective, one thing that has always stood out to me over the years was the lack of visible references to back up the advice she was advocating. I would love a list of references for each section on her wiki or a section at the end of her book. If I have somehow missed where she publishes her references, please let me know
. Currently, this has led me to make the assumption she has formed these ideas from trial and error treating and talking to people with similar symptoms. Although, this advice may well be true (at least, for some patients) it still reads like assumptions without the rigour and resilience of the scientific method to back it up (I'm not saying she is not following the scientific method. However, it's not clear because it's uncertain what she bases her hypothesis on).
I personally fear this strategy of disseminating advice may get in the way of progress if it creates a false perception of making progress on understanding ME/CFS. It could create untried 'givens' that end up getting in the way of progress (whether that is in the academic setting, social issues and tolerance or more bad press that could hinder awareness and funding etc...) and getting to the core of the issue: what
is ME/CFS and how
do we treat it? We need to set a precedent or create a universal framework for ethically disseminating our theories and 'best advice we currently have' that is based on the scientific method and using a process of elimination. This is so people are not confused between theory or 'fact' (by fact I mean, our strongest, most credible theories). We have a responsibility as a community and as individuals, especially if we're in a position of influence, to be objective and transparent when it comes to understanding and communicating ME/CFS.
All I would ask to be done differently is if the theories and advice coming from Sarah Myhills domain are more clearly defined: whether they are experimental and based solely on experience and how the conclusions were drawn etc...
I think the definition of reliable evidence has been summed up nicely already. Concerning the campaign, I also agree that it may come across a bit too emotionally charged and may be misinterpreted.