On last try,
@Laelia, then I'm opting out if this discussion.
Anecdotal evidence that a treatment seems to work for a particular condition is useful in prompting further research, for example when Fluge and Mela came across several cancer patients they treated with Rituximab reporting that their ME got better.
This led to clinical trials which, if successful in showing benefit for a significant number of patients will prompt more trials, and eventually acceptance as a valid treatment.
They will also need to record adverse reactions, so it can be made clear the balance of risk/ reward. This should be part of the trial reporting, and I'm sure will be.
If some doctors had not done these clinical trials, but had instead set themselves up in private practice offering Rituximab to anyone with chronic fatigue and then said lots of their patients got better and were able to return to work, we would have no way of knowing whether it was the Rituximab that helped the patients recover.
Perhaps inadvertently, these hypothetical doctors selected patients who were already recovering anyway or didn't have ME, or were recording patients as recovered simply because they went away, or deciding when the treatment didn't work that they can't have had ME after all, or the patients were so grateful to be getting treatment they had a temporary surge in wellbeing....
The point is, without a double blind trial, we can't know whether the evidence is good or not. So such claims of successful treatment would be nonsense.
On the other hand, once a drug is recommended on the basis of sufficiently robust clinical trials, and goes into general use, it can be withdrawn if lots of reports come in from patients and doctors that serious side effects are occurring in some patients using the drug that perhaps didn't show up in the clinical trials.
Edit to add: Getting back to the point of this thread, I do not feel able to support this particular campaign because i do not accept the claim in point 5 that there are many efficacious treatments. They may be good treatments or they may not. The evidence is not strong enough to pass scientific scrutiny, so could damage our case on all the other points. How can we argue that GET (Edit: I mean PACE) is bad science yet claim unresearched treatments are valid.