BACME Meeting 14-15 March

A fitbit type device would also give heart rate info - perhaps this would undermine the GET narrative ...

 

Well to be fair, she does allow children a voice in the design of her trials, so she has to safeguard against them fiddling the results.

 

Yes, the objective data just isn't reliable you see.
Whereas the subjective data, well of course that's reliable.

 

If the children genuinely were motivated to please, or mischievous, enough to fix the actometer results, that only makes it all the more important to use objective measures. And it emphasizes the need for controls, and preferably also blinding, where possible: any tendency to cheating would match, on the average, in all arms of a rigorous trial, making it a variable that could be controlled for. Human trials deal with confounding factors all the time, that's the whole point of having controls!

Edit: corrected accelerometer to actometer

 

Teenagers in particular are very good at telling you what they think you want to hear to make you go away...

 

"Children cheating on the actometer."

Didn't PACE start off using actometers?

Did they stop because the adults cheated?

 

Makes you ponder exactly who is doing the cheating.

 

I remember that well when attempting to discuss stuff with my daughter , "Yeah ... whatever Dad."

 

Yep, they have it down to a "T".
Interestingly one of my friends has a son who developed OCD after his grandfather's s death.
He attended CAHMS but did not seem.to make much headway. He simply got the gist of where things were going early on and gave them the " correct" answers to be discharged after 8 weeks.
He is in no way a fully functioning individual. In many ways, things are worse. But they did " go away"
Those with anxiety are well versed at anticipating questions and providing what they feel is the " correct" response to avoid things.
It seems that CAHMS in particular can be incredibly niaive . .

 

Mine just tell me to go away

Yes, but it wasn't the adults using the actometers who cheated.

 

Can't imagine where they learned to be so direct

 

They choose the non-BACME members to present and it won’t be by and large the biomedical researchers. I don’t know what will happen if they merge with CMRC, it could go very wrong. As Trish said earlier BACME seems to be med professionals who work in the heavily focused bps CFS clinics or who do bps research. It’s not in their interest to promote heavily bio medical research.

 

Struggling with the concept that smart phones are not as easily cheated as actometers as both could be carried by a working sheepdog for some pretty impressive activity levels

 

Do you mean it's invitation only?

OTOH, it could be a golden opportunity to force them to be exposed to opposing opinions. It could hardly go more wrong than it's already gone, with BACME apparently stuffed with people who have swallowed the BPS model. The only way is up.

 

Or road drills .

 

Yeah, there's a current ad on tv illustrating the point,

https://www.youtube.com/watch?v=U09jAgSuvLA

Not that anyone is ever influenced by advertising...

 

A bit OT, but as this BACME 2011 write-up of PACE is now only available at the internet archieve, I thought I'd post it here so it might turn up on google, etc.

"British Association for CFS/ME (BACME) Statement on the PACE Trial results

The National Institute for Health and Clinical Excellence (NICE) has previously recommended Graded Exercise Therapy (GET) and Cognitive Behaviour Therapy (CBT) as treatments for mild and moderate categories of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) on the basis of somewhat limited evidence in the form of numerically small clinical trials. The PACE Trial represents the highest grade of clinical evidence – a large randomized clinical trial, carefully designed, rigorously conducted and scrupulously analysed and reported. It provides convincing evidence that GET and CBT are safe and effective therapies and should be widely available for patients with CFS/ME as per the NICE guidelines (www.nice.org.uk). Adaptive Pacing Therapy (APT) has not been shown to be effective as delivered within the PACE Trial, but this may differ from activity strategies promoted by CFS/ME services nationally. This trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test such limits.

In addition to these general benefits, research has shown that some people with CFS/ME can feel much better, and increase their activity levels, by gradually increasing the amount of exercise which they do. A large research trial (The PACE Trial, White 2011) has shown that people with CFS/ME who had support from specialist therapists to gradually increase their exercise levels were more likely to report improvements in function and symptoms at the end of the year-long study.

BACME March 2011"

https://web.archive.org/web/20120830075256/http://www.bacme.info/aboutbacme/pace_trial.html

 

It is interesting to note the lack of concern which BACME expresses for those patients who fail to improve, apparently only being interested in those who do.