When people talk about "severe calorie restriction", that's usually relative to the average person, not necessarily relative to what that individual's body actually needs.
I can't say I've noticed this at all - I hear it used much more commonly to refer to the latter but I think we probably spend our time talking to very different groups of people.
I also don't think blogs, forums and personal accounts are strong evidence.
I disagree. With so many examples of the medical orthodoxy of one era ending up so thoroughly discredited by the next, I think we must always make a point of listening to what the people who are actually living with these issues are telling us about their lives (they're known as the real experts for good reason). Especially when these accounts are consistent with each other and with existing research on metabolic rates, both in the general population and in those with metabolic abnormalities. More on that later.
Look at the enormous harm that was done when doctors and scientists decided that ME/CFS was a psychosomatic condition and could be successfully treated with Graded Exercise Therapy, supposedly on the basis of solid scientific research, but against everything their patients were telling them and the world about how they experienced their illness. Both directly but also through blog posts, forums and personal accounts. For years these patients were written off as unreliable witnesses to their own lives and bodies because their reported experiences contradicted the erroneous medical orthodoxy of the time, while great harm was done to them, physically and pschologically. The tide eventually turned and the approach was discredited but it took taking patient/carer testimony seriously to achieve this outcome and improve scientific standards and rigour.
Something similar has happened to a lesser degree with exercise. It's beginning to look like the medical establishment has been wrong all along - that it doesn't induce weight loss for the majority, even with a calorie controlled diet. Millions of "anecdotes", in the form of blogs, forum posts and personal accounts have been telling us exactly this for decades but we chose not to listen, or else we gaslit people into thinking they were accidentally overeating in response, to explain their lack of results. Again because they contradicted the orthodoxy of the time. We must surely learn from past mistakes.
Carers are usually doing their absolute best, but when someone is constantly distressed by hunger it's understandable that intake isn't always measured as perfectly as people think.
I think we need to resist the temptation to write off all of these people as being unreliable reporters just because some of them will be. Yes, of course, with PWS in particular, food sneaking happens a great deal (as strongly evidenced by forums and blog posts!) and of course some carers will sometimes succumb to the pressure when faced with a distressed child or adult, but with 350,000 to 400,000 people worldwide living with PWS alone, I don't think it makes sense to decide that nobody in the history of the condition, or any similar condition, could ever have managed to keep their child or patient on the strict diet they were prescribed. At least for a month or two which is all that would be needed in practice (although I don't struggle to believe those that report that they can maintain these diets long term). Ultimately, common sense suggests that some percentage will be in a position to achieve the strict level of adherence required, especially given that some parents and carers are scientists, doctors and nutritionists by training and because, as noted before, some patients are non-mobile, non-verbal etc so the carer has more control.
I'll split this up as it's getting too big...