I still cannot get a clear idea what the study is trying to discover.
If they are interested in 'ANS recovery' presumably they would need to monitor heart rate for at least two hours after the exercise? We are not told what the blood tests are measuring at all. Maybe they include adrenaline or acetylcholine but I am not sure how useful those would be.
As has been asked, it is not clear how they would establish that shifts in ANS recovery caused PEM.
One thing this and other CPET studies raises for me is the appropriateness of a CPET test as a way of studying triggering PEM. Anyone who realises that a CPET test would trigger PEM for them is likely not to volunteer. And is a CPET test a realistic example of the problem? My guess is that if I had ME/CFS and had to take part in such a study, the hassle of getting to the lab and hanging around, changing, having blood taken, finding somewhere to park, getting home in traffic, might far outweigh the impact of a few minutes on a bike (already assuming I was well enough to undertake that).
I am sceptical about all the stuff about anaerobic thresholds being relevant to PEM, especially if it can occur after mental effort or a long train journey. The CPET test has been used in ME/CFS because it provides precisely measurable physiological indices like VO2max, that have been suggested can be used to show a shift in physiology on a second test that might be indirectly relevant to PEM. But measures on a single test are not very informative. Moreover, riding a bicycle as hard as possible for 20 minutes isn't a particularly sensible way to try to trigger PEM as far as I can see. It is no way typical of what triggers PEM in real life.
The bottom line for me is that if scientists are asking patients to undergo procedures that by definition are supposed to be making them more unwell, they ought to explain in terms that at least a seasoned scientist can understand what they are trying to discover and whether it has any real chance of being useful. I don't get that here yet.
Hoorah! Precisely, thank you for saying that.
And of course as we all know you can stitch up these tests by making people do a few of these and benefit from claiming the effect that is
only caused by x 'which was a controlled dose' when
actually it will always be caused by people having found a better journey to the test itself over the space of doing more of the tests and finding the right car park, drop-off, asking to lie down in the waiting room, knowing where they are going and booking the day off work before etc
On this one are people going home afterwards or lying down in a room there that will be controlled for noise etc? Because I'm not in rest until I'm somewhere
really suitable. And getting home faster because you'd nailed the journey home (and asked to change the time to avoid rush hour) is what will be affecting that HR coming down.
And by now they all
know or should know that pwme will have to do that. And the more unmanageable the task the more filtered the applicants and more adjusted those unaccounted for 'extras' to the task end up being. Because if they don't then they end up as a drop-out not counted in results anyway because the exhaustion is cumulative. And human beings have to learn to cope with what they've signed up for.
I think that 'inadvertent con' needs to be worked on very hard by any allies and patient community. Claiming it is a 'controlled dose' by putting your fingers in the ears to what the condition involves and basic scientific method where you need to control for
actual underlying confounding causes.
What she is potentially mainly measuring is 'was doing my session less stressful as it went on'
(with underlying causal factors like a noisy room getting less noisy, getting home to bed quicker, slickened up journeys and doing less other commitments around later tests etc)
not what she claims she is. OR worse: Krypton factor filter of 'those who got to the end were the most well'.
I'm bored of that exact same 'loaded' experiment being re-run in so many different forms, with no proper null and dodgy claims from correlations - it is time that no committee is allowed to sign off anything for ME/CFS without filling out forms confirming they have absolutely designed this out and will be accounting for anything left in their limitations. Properly. Because it makes research a charade otherwise.
In psychology you would actually do experiments where you 'hide the lead' so not to influence results, like tell people they are playing a game to see reaction times when it's about mood when they turn up the central heating on it. Until we sort this issue all of these are potentially just
that but the same
actual experiment/phenomena being re-run: the Krypton Factor Filter + making the
total load around the task more manageable.
So I don't understand why things like how 'disorganised' the admin is, ie how much hanging around and walking to find places etc for the starter measure (vs later ones) don't have to be detailed in task sheets, monitored independently as I almost imagine the potential for when eg kids on their first day of school are encouraged not to do too well on their reading test because it's their progress that is being assessed at the end of the year vs that.
- this time to try and rename raised heart rate means 'ANS' instead of 'body being put under stress'. She
could run just heart rate if she wants, and call a spade a spade without putting inference on it - if that is what she is measuring call it exactly that.
If she thinks she is 'looking into PEM' then she's overshot her start-line by about 5miles because she doesn't understand what it is. Noone does, so how is she measuring it? When/over what time-period? Which objective tests? and what do they precisely tell her?
And does she get this misses that same point that all the rehabbers do which is that getting people to 'be able to do more' for a few months isn't the hard bit. We just can't do it without deterioration 6months after that. Which is the actual illness part. SO where is the measure that any of this leads to help and not harm, by checking at 6, 12, 18, 24, 36months?