Desperation and money making opportunities for the more corrupt go hand in hand sadly.
This, unfortunately, is as the heart of the problem in my opinion, and why CFS/ME patients have been so taken advantage of.
My husband and I have seen several so-called "CFS specialists" who all claimed to have "the cure" and assured us that if we followed their protocols we would be much improved. Spoiler alert: we didn't improve.
I fully support practitioners thinking out of the box and being willing to do some experimentation to find something that works for their patients (Goldstein style) as long as patients completely understand what the risks are.
The problem that arises is that with a poorly understood illness like CFS/ME, all sorts of doctors/alternative practitioners come out of the woodwork making claims that they have the answer...
Myhill or any of the other CFS doctors can claim that certain treatments work for a majority of their patients (as their evidence), but patients have no way of even knowing whether this is true.
For example, a "CFS specialist" I saw in Florida claimed to have a 98% success rate treating with Valtrex and some various supplements. As soon as I heard this statistic, I knew it was bogus. Anyone with a 98% success rate would be FAMOUS, their name would be all over this board. And, in fact, the treatment did nothing for either of us and we stopped going. Yet, I bet his success rate is still 98%.
If a doctor claims that a treatment doesn't have any controlled trials backing it up, but it seems to work for his/her other CFS patients, what do you believe? They certainly can't give you specific names of patients to verify what they are saying is true, so you are really put in the position of believing unverified claims that could either be legit or completely made up.
Since most people are so desperate, I think many of these specialists are given a free pass and no kind of "evidence" is ever demanded of them because we know that the evidence doesn't exist and we are willing to accept whatever treatments they dish out if there is even a sliver of a chance of getting better. That kind of situation is ripe for exploitation. Yet, if we only act when there is RCT evidence, then we'll basically never act.