The suggestion of a unified comms & PR strategy seems a very sound one to me. The ME patient community is constantly being blindsided, while the very slick strategy with the SMC as its lynchpin has effectively shaped public & medical opinion and obviously discouraged clinicians and researchers from entering the field. The suggestion of a public inquiry - I would like to see one eventually, but we're a community with few resources and capabilities.
A couple of years into my own ME, a relative who previously seemed to have thought that I was probably just depressed or unmotivated saw a local news story about a young girl struggling with ME, and within days she was volunteering to take me to appointments and has remained in regular contact ever since. It's much harder to stigmatise patients as evil militants if media coverage humanises the condition sympathetically.
Professional comms specialists may seem like an unnecessary outlay when charities are so dependent on small donations from very sick people, but the NICE process coupled with the sudden public awareness of post-viral syndromes in the form of Long COVID is a singular opportunity. Allowing the SMC, KCL IoP etc to controversialise the guidelines and set the post-NICE narrative in the media unopposed would be a mistake. If there were a campaign to help fund this, I'd certainly donate to it.
What seems to me to be the most important course of action following the NICE guidelines is the provision of high-quality physician-led clinical services not beholden to any aetiological model. The perennial complaint of most ME patients on social media is "lack of funding for biomedical research", but this rarely occurs in isolation: the best research proposals depend on well-honed clinical observation & insight & curiosity, often over a prolonged period of time to observe patterns, triggers, patients with unusual presentations; in the absence of clinics run by open-minded, actively interested doctors, no such observations are ever made. We don't even have any hard data on patients' experiences of PEM, and there's no widely accepted severity scale to rival Chalder's. I've had half a dozen research ideas over the years based on my own ME symptoms, but no-one to suggest them to. When Drs Weir, Bansal etc retire even from private practice - is there anyone genuinely sympathetic to replace them?
I think it's underestimated just how powerful the clinical commissioners are in the CCG system established following the Health and Social Care Act 2012. There might also be a role for a unified, "cross-party" group to lobby more aggressively on the formation and direction of clinical services; this would have to be done in collaboration with patients in each CCG region. As a simple example,
this woman, liaising with a charity, successfully lobbied her CCG to obtain greater access to IVF. Even Gerada
suggested this strategy back in 2013, & informal lobbying from ME patients also resulted in a CCG in Wales placing ME patients in the COVID-19 vaccine group 6. Worth considering?