BACME Meeting 14-15 March

Amw66 said:
A fitbit type device would also give heart rate info - perhaps this would undermine the GET narrative ...
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I don't see why someone wouldn't use such devices these days. I think they are not sufficiently good for medical purposes (diagnosis etc) but I would have thought they were for some from of longer term activity monitoring.

Also I believe they are quite fashionable which means that many would be happy to wear them.
 
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
 
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Indigophoton said:
If the children genuinely were motivated to please, or mischievous, enough to fix the accelerometer 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!
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Teenagers in particular are very good at telling you what they think you want to hear to make you go away...
 
Barry said:
I remember that well when attempting to discuss stuff with my daughter , "Yeah ... whatever Dad."
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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 . .
 
Sasha said:
If BACME are willing to accept non-BACME members presenting at their conference (and I assume Per Fink isn't one, not being a practitioner in Britain) then it's a conference that would seem ripe for having presentations from people such as @Jonathan Edwards and Nigel Speight and @dave30th (David Tuller) and others, to properly wake them up to what they're doing.

I'm serious about that - I hope that people who are knowledgeable about why CBT and GET are such a pile of **** will submit papers to present at BACME's conference next year.
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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.
 
anniekim said:
They choose the non-BACME members to present
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Do you mean it's invitation only?

I don’t know what will happen if they merge with CMRC, it could go very wrong.
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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.
 
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
 
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