P2P workshop Dec. 9 & 10, 2014

[Esther12]

For CBT/counselling, M.E. Beth Smith did not mention problems with bias in nonblinded trials. Rather important omission.

 

[Nielk]

None used criteria of ME!!!! For GET.

 

[Nielk]

Quigong showedsome improvement in fatigue.

Home orthostatic training exercise no difference from sham training.

 

[dancer]

This summary of their GET and CBT trial analysis makes me feel like we're in the Dark Ages.

 

[Nielk]

Results of GET similar to CBT. Not associated with serious harm for either one!!!

 

[Christopher]

 

[dancer]

"less focused on symptoms" patients did better.

ARGH!
How about if you are healthier and have less severe symptoms you don't NEED to notice the symptoms as much???
Where is their sense of basic logic????

 

[Nielk]

Factors related to responders:

Younger
Less focused on symptoms (!!!)
Compliant with homework
Staying within energy envelope

 

[Nielk]

Exposure attention: more attention compared to less attention can create responses to treatment.

Expectation bias can influence. Teaching them that if they believe it, it will happen. (What bs!!!!!!)

 

[dancer]

Good - she's at least acknowledging "expectation bias" - especially when a patient is taught they can "control their symptoms" by behavior and are then filling out questionaires.

 

[Wildcat]

.
Neilk reported/wrote: "Results of GET similar to CBT. Not associated with serious harm for either one!!!"

This P2P is a farcical pantomine!
.

 

[Esther12]

Is now doing a slide on problems with bias - but she present it as: "If you believe you will get better, then you will get better" - doesn't mention problems with unreliable nature of the outcome measures used! Ugh.

"Trials did not measure changes in measures in activity"?

Why did they exclude the ones that did and showed CBT led to no improvement. I can't remember that now.

 

[Nielk]

Measure of activity have not been measured.

Oxford and Fukuda were criteria used. ( meaning no CCC or ICC.

 

[Valentijn]

The one positive is that she has repeatedly emphasized that none of these trials selected for ME patients with PEM. And that Oxford should be retired.

 

[Esther12]

Hope a knowledgeable patient is there to take her apart. Feel like we dodged a bullet if she was involved in the report.

 

[Nielk]

Future research needs:

Larger, more participants.
Improving design and execution. Longer periods.

 

[Esther12]

Do they not get questioned by anyone? darn it, I need to leave soon. Hopefully these videos will be online somewhere later.

 

[Valentijn]

Future research needs:

Larger, more participants.
Improving design and execution. Longer periods.

So basically ... they need to actually FUND larger trials.

 

[Valentijn]

Do they not get questioned by anyone? darn it, I need to leave soon. Hopefully these videos will be online somewhere later.

After the presentations, they all get questioned at the same time before the break I think. That's how they did it yesterday.

 

[dancer]

Hope a knowledgeable patient is there to take her apart. Feel like we dodged a bullet if she was involved in the report.

Bummer...they've moved right on to the next speaker. I was hoping they'd have questions/comments.