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Although many here will already be familiar with this, this is worth keeping in mind ... Includes comments from PACE participants, including one I only just tracked down again, where it was suggested the heart rate readings not be recorded as they had to be wrong.

I also wonder if this is why the PACE authors so ardently refuse to release the rest of the PACE trial data. I think it is very possible that hidden amongst that might be more evidence of harms, and/or evidence of what we know to be harms but they likely dismissed as outside their definition of...

What value do actometers actually measure (rather than any inferred measure)? Is it energy expended over time? Or something else? And it may also be that if actometers are not always different from controls versus PwME, then that just might indicate misdiagnosis?

But what you describe here is different to what I'm talking about ...

To my medically uneducated brain, there is a rational explanation for this. I think the sensation of 'heaviness' relates to the body's capability to apply energy at the required rate (i.e. required power). If you go to lift anything, a bike say, and you are fairly fit (powerful therefore), the...

'Liked' Anita Vandenbeld's FB post.

Not sure if this comment risks derailing this thread, or alternatively if it might be very relevant - mods decide please. How much good evidence is there that the deconditioning hypothesis is itself unfounded and invalid? Because surely any treatment for any condition, whose use is premised and...

Especially regarding ...

Clearly essential, to help overcome the false belief that jumping out of an aircraft in flight can result in physiological trauma. A crucial part of the course is to jump up and down three times after landing, shouting "There, see! Who needed a parachute! I'm not a going to be a dollop of...

That is so very true.

I think this needs to include cases where "harms" have been inadequately defined, though I appreciate things can get a bit nebulous. But it's no good excluding harmful effects unless the person actually drops dead, or close to. One of the major problems is that PwME can be harmed by GET, but...

Beat me to it. And still it drags on!

To me this illustrates a key facet of pacing - there is no one-size-fits-all. In fact, given everyone's energy availability (including rate and pattern at which it can be drawn on) are very bespoke, I'm very wary of anything involving specifics. Needs to be sane budgeting of each individual's...

Yep.

I think your article is wonderful @Naomi10. If medical professionals reading it are not moved, and don't gain real insights, then they ought to consider a different profession. You get things across extremely well.

Any suggestion of a causal relationship based on this must surely be extremely tenuous?

Beat me to it. If life threatening conditions can be passed down the line, and medical science is now better at saving those lives, then it seems highly possible it is at least a factor. I imagine asthma may be of higher prevalence today, simply because in times past many sufferers would have...

Yes, in this context it is about evidence.

Could this be another indication that ME is autoimmune related, for some at least. Something comes along that gives the immune system a kick, and briefly the ME symptoms change. Could it be that briefly the immune system has a real bug to fight, rather than its host? Just to clarify I'm neither...

Yes, it's much more about energy budgeting. For each PwME there is only so much energy available over any given period of time. As for financial budgeting, it may be all too easy to 'over spend' energy prematurely, not realising it will be needed later to avoid going overdrawn. The major...