David Tuller: Trial By Error: So What's Happening with the MAGENTA Trial?

[Trish]

They will not be asked to record other activities, only exercise.

How does that work? Ah, I know, that gets around the problem that in order to do the increasing amounts of ''exercise'' they have to cut back more and more on other activities. No wonder they don't want them wearing activity monitors all day.

 

[Sean]

When they have found their baseline, we will ask participants to slowly increase their exercise. When they are able to do 30 minutes each day, we will increase the intensity of exercise."

This is clearly based on the presumption that it is going to happen.

They are simply refusing to allow for the possibility that it might not happen.

 

[rvallee]

This 2 minute walking getting up from sitting in a minute thing is c r a p. First few minutes I walk like a normal person most of the time. It’s been remarked on by friends and family and my reply is always I’ve not done very much today so I’ve got most of my energy at the moment see what I’m like after we’ve had lunch. Then after lunch and chatting when my energy has gone and I’m walking like a little old lady who is 100 they get what I’m on about.

That's an issue I haven't seen much discussed yet even though it's a critical failure in all the psychosocial research. Every trial that uses a single measurement in time is misleading because of the wildly fluctuating nature of this disease. It would be as accurate as a simple measurement of blood sugar level and slapping a nice "RECOVERED" stamp on diabetics who have a single good reading. Or for a more similar disease, taking a relatively symptom-free period for MS patients and declaring them cured because they are not having a relapse at this moment.

I have had 3 remissions. Each time lower than the last, but I was able to work and have a relatively normal life, albeit a much less active one. I had months where I could barely walk across a room most days. Even presently I have days when I can do a little housework like vacuuming and going for a quick grocery run, while others I can't even cook myself food. The psychosocial research doesn't even attempt to address this. Single point data in this disease are completely misleading yet because of the questionnaire nature of psychosocial research, that's all they have.

What's more annoying is that variability is a known feature of ME, but that's precisely why psychosocial research restricts itself entirely to chronic fatigue, which does not have this feature and they can just brush those concerns aside but simply saying "this applies to ME because we say so". It's a severe ethical and professional failure of authorities to allow this.

 

[Trish]

Discussion of Apps, Actometers and other monitoring devices has been moved to this thread

 

[TiredSam]

There seems to be a lot of attempts to merge neurological conditions with mental health from what I’ve seen recently ...clearly nonsense but they do seem to be crossing a lot of boundaries at the moment

Neuroscience innit?

 

[Barry]

they do seem to be crossing a lot of boundaries at the moment

Overstepping in many cases.

This 2 minute walking getting up from sitting in a minute thing is c r a p. First few minutes I walk like a normal person most of the time. It’s been remarked on by friends and family and my reply is always I’ve not done very much today so I’ve got most of my energy at the moment see what I’m like after we’ve had lunch. Then after lunch and chatting when my energy has gone and I’m walking like a little old lady who is 100 they get what I’m on about.

Much like my wife, though she never walks very fast. But then after a while the meager energy reserve runs out, and like you, she slows right down mentally and physically.

They will not be asked to record other activities, only exercise.

How does that work? Ah, I know, that gets around the problem that in order to do the increasing amounts of ''exercise'' they have to cut back more and more on other activities. No wonder they don't want them wearing activity monitors all day.

Spot on.