Assessment of the scientific rigour of RCTs on the effectiveness of CBT and GET for ME/CFS: a systematic review (2019) Ahmed et al

Andy said:
Which is why I made the point of informing patients at recruitment. And I don't think that most of us on the forum would be suitable participants, but I'd argue we have to accept that we are, on average, a more seriously affected group of patients, and that there are patients out there who could take part more safely.


Sorry but I'm not talking about Graded Exercise Therapy, and this is the thing that I think people are getting stuck on. The study would not be looking at using increased activity as a therapeutic regime, potentially following the PACE model where setbacks are to be worked through, it would be attempting to look at what differences there are, or aren't, between patients and controls in response to a reasonable and limited exercise challenge.


But you are a severely affected, bedbound patient, so this result isn't surprising - your sustainable activity limit is very low. Severely affected are unlikely to be taking part in a study - and while the severe should be studied, it doesn't mean that looking at the less severe, who will be better able to tolerate such a challenge, isn't worthwhile.

Edited to correct spelling.
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I am fine if studies are completely detached from “improving fitness” as you suggest and more centred on understanding what is wrong when we exercise ..however the ethical issue remains (as it does for CPET). In order to study the mechanism ...do we have to harm someone?

The idea that mild people are these more appropriate test subjects doesn’t ring true for me.

I’m classed as mild according to the MEA scale ...my most recent PEM attack (worst for over a year...lasting 3 days and after 2 weeks I still haven’t recovered from it) was from spending 1 hr sat down painting a window for only an hour on 3 consecutive days (taking all the normal precautions). I stupidly thought if I took a week off work and looked at my heart rate monitor and rested for the rest of the time it would be fine. After all I wasn’t at work. The weakness in my right arm from doing this fairly gentle activity is still there...I can’t lift up my iPad to write this.

I see a lot of threads mention mild people as if they are somehow different to the rest of us.

As a mild person ...yes you can do more than a severe person but in my case it definitely doesn’t involve any useful form of exercise. Walking more than a few yards at a time, running jogging for a minute they all make me crash. Even if you think you know what your limits are it’s all too easy to push over or be surprised by other things that may be going on.

So given this, how would one determine what a “mild’ person could do and what was appropriate in terms of a challenge? Surely this depends on what else they have going on? If there is variance within the definition of mild, how do you tailor something to the individual test subject?

So I think the problem has to be solved, not by challenging subjects with ‘appropriate exercise’, more by way of monitoring what happens to muscles, circulation etc as part of everyday life. This seems to point to some form of constant monitoring or some modelling work? This would be more useful in terms of specifying realistic context.

This poses some challenges in terms of test method and controls, but the moral dilemma is still there and can’t really be dealt with by suggesting mild people have less to lose or somehow have more resilience. I know that’s not what you are saying @Andy but I can see this assumption being made due to the problems with scales and definitions and it should be a consideration for any experimental design. It’s that bloody word mild that’s the problem.

I personally believe that all test subjects whether mild moderate or severe are just as entitled to hold on to what they have and no experiment should cause deterioration. I seem to see a lot of accounts of severe people on this forum that were mild originally so it does happen.

Perhaps I am being over cautious ...I’ve seen a slow deterioration and I can’t help but wonder whether there is an accumulative effect of crashing.
 
Mij said:
It is! And most won't realize until they're 10+ years into the illness.
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+1

I probably could have stayed at a level where I would at least have been able to work part-time and sustain my independence. I blew off past it by pushing and haven't improve in 3 years, whereas I used to stabilize up a bit before. Fuck the BPS noise and their monstrous ideology.
 
Inara said:
Yes, mild ME is severe for most people.
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I've wondered if it should be moderate, substantial, severe, very severe instead. I can't quite think of a better scale, unless you have 'stage 1' to 'stage 4' or something like that.

Moderator note: This post has been copied, and posts discussing it moved to this new thread:
ME severity scales - discussion
 
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Andy said:
But why does nobody else seem to think there is potential use in investigating graded exercise (or just drop the graded part to make it just exercise)?

In theory, sedentary but otherwise healthy people can steadily increase their exercise, their body will react to this change in activity and therefore become fitter and more capable of handling this increased activity, whereas for patients they can safely exercise (or if not exercise then exert themselves) up to, what I call, their individual sustainable exertion limit but our bodies can't react to this change in activity in the same way - it's this inability for our bodies to react to exertion that could be investigated with a exercise/exertion approach.
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Yeah, I agree with this. So far there were only some very small studies by Black & McCully and Friedman who both seemed to indicate that there's an activity ceiling for ME/CFS patients. https://me-pedia.org/wiki/Glass_ceiling_effect
 
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