This is a rather poor article and conflates a number of important issues, such as failing to give any real context on the definitional issues, equating statements about the heterogeneity of CFS with statements about the heterogeneity of ME, and underplaying the deep flaws of PACE, among others. Further, that she does not mention that PACE allowed patients to potentially leave the trial sicker than they entered and still be classed as recovered, but then goes on to paint the very same actors responsible for that trial and similar research as engaging in the disease in good faith is laughable. But, I won't go into a deeper analysis, because the flaws are obvious and the journalist seems to have arrived at her conclusions.
I did, however, want to call out one little section that left me incredulous. The author accepts that Esther Crawley wants good faith debate about the disease, but doesn't question whether it is reasonable for her to equate FOIA requests with abuse or for her to attempt to circumscribe the nature of debate to exclude anything that might be described as an attack. It takes an astounding amount of credulity to reconcile such contradictory statements.
“'You can question or debate, but no coordinated attacks.'” Who gets to define what is an attack and what is not? When you are being criticized, it is always going to feel like an attack, to one degree or another, but that does not necessarily make those attacks demonstrative of bad faith. If being criticized gives you the nuclear option to shut down all further debate, then where does debate even begin?
When patients are portrayed as abusive of the rights of free speech for criticizing a disease model that they believe has no basis in reality or attempting to gain information about a deeply flawed study, most reasonable people, I would hope, would question whether the person doing the portrayal was attempting to shut down debate.