Based on the premise of 'first, do no harm' I think we can have different levels of evidence for:
a) recommendations intended to prevent harm - here it's reasonable to rely on patient experience where no other evidence exists
b) recommendations for treatments intended to cure (or significantly improve) ME - here we should insist on a higher level of evidence from quality research
So if S4ME want to say the problem is with committee experience, and it should only ever used in places where otherwise the patient would come to great harm
It's not my impression that anybody here at S4ME is suggesting that?
My own argument for accepting recommendations/suggestions based on committee/patient experience (where no other evidence exists) for 'do no harm' situations was precisely to ensure those suggestions
stay in the guidelines.
I fully expect the validity of patient experience as evidence to be challenged by
others though. There'll be those who argue that patients (and allies) have discredited those beautiful GET/CBT/LP trials as very low quality evidence that one shouldn't base recommendations on. In their SMC reactions to the guidelines they've already signalled they'll be pursuing the 'evidence-based' angle (evidence-based in their view). So they'll argue that either anecdotal patient evidence should also be discounted as very low quality evidence or that their own 'evidence' should be rated higher, allowing for reentry of GET/CBT/LP. We need to be able to counter that argument.
As I see it, broadly speaking the guideline recommendations for management of ME can be divided into three categories: recommendations around overexertion (in a broad sense), symptom & comorbidity treatment, and the special case of the formerly recommended treatments now being advised against.
We have plenty enough evidence of harm following overexertion. Sure, much of it is based on patient surveys with selection bias, and on anecdotal patient reports, but there are so many of them that the threshold of 'reasonable suspicion of harm' was crossed long ago and we're now firmly into 'very probably harmful' territory (and it would be unethical to try to establish 'certain harm'). This patient experience is corroborated by studies showing our bodies do strange physiological things after exertion as well as by Jason's Energy Envelope study that shows pwME who manage to live withing their energy envelope do better over 3 or 5(?) years on fatigue scores than those who can't stay within their envelope. None of those pieces of evidence by themselves is a smoking gun telling us exactly what's going on but they're all pointing in the same direction: overexertion is harmful for us. The only 'evidence' to the contrary is claims by BPS study authors and clinics that they've never seen any harm yet. But since they never asked about harm in any meaningful way they can hardly claim to have studied the matter.
So the guidelines recommend against overexertion (in a broad sense) based on the above evidence. They then make a number of suggestions how this can be achieved, often based on common patient experience for lack of other evidence. These suggestions based on patient experience fit into the 'do no harm' box by providing optional tools to help patients avoid harm from overexerting in various ways. This includes suggestions like using heart rate monitors. The guidelines don't say every suggestion will suit every patient, or that patients using other strategies will come to great harm, and the guidelines certainly don't say every patient must wear a heart rate monitor or risk their benefits (as was pretty much the case with GET/CBT in the past).
Other suggestions/recommendations relate to symptom management and comorbidities such as nausea, depression and OI. These are not specific to ME and are recommended to be treated much as they would be in any other condition so the general evidence base for those symptoms and comorbidities applies - and falls outside the remit of this review except where the general recommendations conflict with the ME recommendation to avoid overexertion (exercise prescriptions for depression spring to mind). IIRC there's a recommendation based on patient experience to start medication at extra low doses but that falls under the do no harm label.
Finally there are GET, CBT & LP which require special attention because they've been the recommended and supposedly evidence-based treatments for so long and will take significant effort to uproot now. They also, unlike treatments for individual symptoms, claim to affect the course of ME itself. Clearly they fall foul of the do no harm principle and should be scrapped based on that basis alone. But, unlike many of the other suggestions where patient experience is the only thing we have for now, for this trio of treatments we additionally do have plenty of studies investigating them. And all those studies point in the same direction: the treatments don't work (assuming you look at the actual data, not at wishful interpretations).
It's possible some of the individual suggestions based on patient experience will eventually be shown to be ineffective, if anyone ever gets around to properly studying them, but for now they're the best we have. At least they're based on a premise there is some evidence for - that overexertion causes harm - and there are no reports of harm from people using them. So let's keep those suggestions in the guidelines.
Whereas the GET/CBT/LP type treatments have already been shown to not work
and the postulated mechanisms of how they were supposed work have been debunked
and there's no end of reports of harm from them. So let's get rid.
Edit: grammar
