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

No worries. Me not tracking the dates well enough, and wondering why they shifted the start date back. Must have been a reason.

 

Not necessary a valid/logical/scientific reason though.

 

re the actometers; I know others have said this but why on earth didn't they use fitbits?
Crawleys always going on about how she is
'like down with the kids, yeah', and has teenage children.

It would have been an obvious choice; plus it would have measured loads of other things that she says are key to the childrens 'recovery' eg sleep patterns.

Plus on activity "You can record individual activities by putting your Fitbit into Activity/Exercise Mode mode".

same goes for all the others using the ruddy CFQ

This post has been copied to a new thread and some following posts about the use of actometers have been moved or copied to enable that discussion to continue separately.
The use of monitoring devices such as actometers to measure outcomes in clinical trials. Discussion thread

 

So the trial registration acknowledges they are investigating a nervous system disease. Does deconditioning count as a nervous system disease? (I'm assuming not!). In which case why are they a trialling a psychological treatment intended to help people exercise their way back to health from deconditioning?

http://www.isrctn.com/ISRCTN23962803

 

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

 

IAPT, ££££

 

this might be the "functional" nervous category which a lot of the insurers use

Nervous system can be thought of in two ways - if you do a search for nervous system illnesses you will get a lot of mental health ones as well as those of a more biological systemic nature. We on this forum always see it as biological but I think a lot of people tend to view it the other way.

 

What a tangled web these people weave.

 

yes they are very manipulative!

I don't agree with that version at all, but from the work I have done it was one major issue that I came across. The logical correct definition didn't seem to make any difference and people on the other side of the fence seem able to interpret the definition how they want it to be.

 

The mental health charities are also jumping on the band wagon I’ve noticed using biological neurological conditions in association with the 1 in 4 statistic. This seems odd that those in the business of educating the public would mislead in this way...almost as if they are in on it too?

Needless to say I declined the opportunity to “talk about my problems” when my employer held a chat and a curry event at the works canteen in aid of their mental health charity.

Pretty dispicable since neurological conditions actually suffer from far more social stigma than mental health in my experience.

 

Are you going to be blogging about the conference, @dave30th?

 

Per info on the Magenta website:

"Graded Exercise Therapy
Participants in this group will receive a detailed physical assessment including how far they can walk in 2 minutes and how many times they can move from sitting to standing in one minute. This will help us set a safe exercise programme. Participants will be asked about the exercise they do each day and will be helped to find their exercise baseline. The baseline is the average amount of exercise they do each day. It will be less than they do on a good day. 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. participants will be asked to record exercise using either charts or the iPhone app ActiveME. They will not be asked to record other activities, only exercise. To make sure participants do not over do their exercise, we will ask them to use a heart rate monitor."

So, @Amw66:
The participants can use the (Bristol devised) "iphone app Active ME"

http://www.bristol.ac.uk/ccah/research/childdevelopmentdisability/chronic-fatigue/magenta-trial/

 

yeah, I'll write up something or other about it.

 

Not much use ehen it is only for exercise.

I have a weird memory that the App had been dropped. ( This could be a false memory from lack of sleep )

 

https://itunes.apple.com/gb/app/activeme/id458308805?mt=8

 

Thanks! What goes on at the CMRC is very important to us all, and the conference is a window into that. It's hugely frustrating for us that most of us are too sick to go to these things and so it's great if someone reports back about the stuff that goes on away from the presentations.

 

Yep, @Arnie Pye - John Hancock - a large US insurer. It was listed under the news items yesterday under the BBC red button.

 

I am confused.

We seem to have: Protocol version 1, date submitted for review 22-Jan-2016. (This is described as bmjopen-2016-022255)

Then presumably amended in response to Reviewer 1 recommended changes. Reviewer 1 returned date 04-Feb-2016

Then Protocol Version 2, dated 22-April-2016. This is described as (bmjopen-2016-011255.R1)

CONFUSINGLY, both these versions have a Word Count of exactly the same ie: 3953!!

I have not compared them, isn't there a tool for doing this @Andy @Adrian @Graham or anyone else....

They can both be found at:
https://bmjopen.bmj.com/content/bmjopen/6/7/e011255.draft-revisions.pdf

Second starts around p26, and covers more pages so may just be an incorrect word count!

 

Ah no

There is a third version in there, dated 13-May 2016, that also says Word Count 3953 from P52!