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Presumably advice only has to adopt the status of being advice at the time it is being administered, and I suppose at the time it is being considered for regulation, guideline usage, etc. In principle you could presumably throw a number of random notions into a trial, with no one having any idea...

I never said it was. I said one side of the equation is that resting too much has the potential for harm in any person, nothing to do with ME. The other side of the equation is that for pwME exercising too much can cause harm due to their ME. Because the science of the latter is very poorly...

So what sort of evidence are we talking about? What would be the terminology? Empirical evidence? Presumably more than anecdotal evidence, because even though the science may not be understood, there is hopefully a degree of scientific rigour being applied to the data that is gathered.

Excellent :)

Agreed, but my point was that I think the authors fully appreciate this, and were making their statement almost as an oblique challenge to any scientist stupid enough to think it worth running such a further trial.

As an engineer I sometimes find it useful to consider extremes. Imagine pwME across a full spectrum of severities, from almost healthy, to the most severe of all (as there unfortunately are of course). At the most severe end of the spectrum the only 'activity' pwME can manage is to simply not...

I've commented about this a few times in the past couple of years. If the only kind of worsening considered is when things are bad enough to be considered harms, then that "bandstop filter" effect could mask many deterioration scenarios. I just cannot fathom why harms seem to be the only form of...

But it's far from dead, else we would not still be in this absurd mess. The BPS horse is still thrashing around spreading it's muck everywhere. (I actually like horses by the way, and am only pursing the idiom. But then again, I also admire good scientists). I think that is the sub-texted point...

Thanks @Trish for bringing this thread back into focus, re NICE and evidence based (or lack of) recommendations. Many of the bits in your NICE quote are scary: "Management of severe CFS/ME is difficult and complex and healthcare professionals should recognise that specialist expertise is...

Is this it? https://www.sciencedaily.com/releases/2016/06/160623184238.htm https://me-pedia.org/wiki/Fred_Friedberg

Yes, @Jonathan Edwards only really noted it as an example, but because it is an easy one to discuss, we have got a bit hung up on it.

Yes, I've been pondering this. But I think a study would get more complicated even than that. My wife's symptoms vary significantly over quite short timescales, depending on what is going on in her life. When life is fairly routine, my wife can pace herself fairly well. But when we have...

Yes, capturing factual data from a large number of people, as untainted as possible by beliefs (likely sincerely held) about relationships between that data. Then let data analysis tease out the stats of what correlations there might really be. Maybe even some clues to causal relationships.

@Adrian: Do you know why the forum does not fully honour the BB Code 'code' tag? As per @wigglethemouse's link ... ... it does preserve spacing, but dos not seem to use a fixed width font. Is this configurable as part of the forum set up?

I tried exactly the same thing using 'code' and courier font, but the 'code' seems to override the font, and 'code' does not automatically give equi-spaced font, which is annoying.

For people with hypothyroidism as well as ME, it would be good to know if being allowed to take a thyroxine dose that pushes FT4 a touch above the normally accepted high limit is worth considering as a matter of course. My wife is on a slightly higher dose these days, which does just that, but...

I think the key is that @Theresa said achievable goals. ETA: But of course it depends very much on who is presuming to set the goals. I was thinking when I wrote this of people setting their own realistic goals, rather than others 'prescribing' them.

I used to be a big fan of the James Herriot vet stories, and I seem to remember him doing this with one of his patients, when everything else he tried had failed, and the animal looked like it was on its way out. I think it put it out for 48 hours or something, and it made a 'miraculous' recovery.

That would fit with my wife's experience, who was diagnosed with ME 12 years or so ago. As I've said a few posts back, I see it as a form of symptom management, and maybe that is like all sorts of other illnesses, the more severe the symptoms the harder they are going to be to manage. Up to a...

An awful lot of medical professionals, in their 'professional judgement', still believe ME is not a real illness, so is indeed very often unevidenced bullshit.