It's odd that you point at ME/CFS as an example of failed patient engagement when it has in fact been an example of not only refusing to engage with the patient community, but of aggressively maligning and holding in high prejudice.
You cite as example a 2011 article about alleged death threats. In 2016 those claims were presented to an ICO tribunal by the PACE researchers, who were in turn admonished for having made "grossly exaggerated" claims. This is in the public domain, there is no justification to repeat claims that have been rejected by a tribunal, which has a much higher burden of evidence than the court of public opinion in which the ME community is regularly insulted and mocked.
In 2007, a NICE committee drafted guidelines for ME/CFS where patient input was systematically ignored and demeaned. Those guidelines have been official since then, and unofficially most of its substance has been used in practice for 20 years. The result, which has been warned insistently and consistently by the patient community, has been a complete and total disaster.
It is even more puzzling that you would cite the example of AIDS as successful patient engagement, when in the early days of the AIDS crisis this community was vilified and demonized as grotesquely as the ME community is today. Progress was precisely marked by a complete turnaround, in turning a hitherto vilified patient community into full-fledged partners, rather than militant activists, a trope still used today to dismiss all input from the ME community.
For the whole 20 years of a strictly supply-side approach, there have been consistent surveys and reviews showing not only complete stagnation but actual regress. Many ME patients who were involved before the current BPS paradigm took over 3 decades ago report the same: that as a direct result of completely shutting down and maligning the patient community, things have actually gotten worse.
This is the source of this "tension": complete and total disaster in outcome as a direct result of total rejection of patient engagement. ME advocates who tried to engage during this period warned consistently, and accurately, of the exact outcomes we see today. Because as primary stakeholders, it is the patients who experience the outcomes, good as well as bad. As the most basic common sense would suggest, the idea that millions are refusing treatment that is safe and effective out of pettiness is ludicrous and absurd.
ME/CFS is just about the most textbook example of how to fail at engaging with and addressing not just the wants but the most pressing needs of a patient community, with predictably disastrous consequences. So that you would use it, citing debunked claims as support, as an example of failed engagement when it is precisely the fact that engagement has been aggressively rejected is of great concern moving forward with plans for patient-led research.
ME/CFS patients have one of the lowest health-related quality of life ratings among all major diseases and much of it is the direct result of guidelines and misrepresentation hostile and indifferent to patient experience. It makes your point better than any other example, that genuine patient-led research is critical, serving as an example of how to fail to the maximum extent that it is possible to fail, in actually managing to not only stall but actually regress an entire disease for 3 decades.
Among the ME community are many smart, passionate people who had successful careers in medicine, science and other rigorous professions. Having involved those voices would have lead to a completely different outcome than the current BPS disaster, exported worldwide to universal failure.
Australia has found the very same outcome, having recently published a report acknowledging that their 2002 guidelines, bullied through with about the same contempt and hostility to patient input, have been a complete and total failure. Many other countries are facing the same tragic reality of medicine having been complicit in doing enormous harm, largely because of a process that has been hostile to patient input.
Pay attention to successes, but even more to failures. In the whole history of medicine it is hard to find a more complete and shameful example of failure as ME/CFS, a failure marked by contempt for patient input and that will inevitably serve as textbook example for how not practice medicine for decades to come, if not further. The facts speak for themselves, but only if you pay attention to them.
