Review of PACE trial and patient disagreement

[SpecialK82]

http://www.sleepreviewmag.com/news/2011-03-16_03.asp

Unfortunately, they did not explain the patient side thoroughly, just that organizations believe CBT and GET can be harmful.

An excerpt from the article:

The authors conclude: "We affirm that cognitive behavior therapy and graded exercise therapy are moderately effective outpatient treatments for chronic fatigue syndrome when added to specialist medical care, as compared with adaptive pacing therapy or specialist medical care alone. Findings from PACE also allow the following interpretations: adaptive pacing therapy added to specialist medical care is no more effective than specialist medical care alone; our findings apply to patients with differently defined chronic fatigue syndrome and myalgic encephalomyelitis (ME) whose main symptom is fatigue; and all four treatments tested are safe."

"differently defined chronic fatigue syndrome" - what do they mean?? That's strange wording, and it certainly wasn't explained that way in the title in The Lancet...

 

[Hope123]

They meant that they picked people by Oxford but then subgrouped them into London and CDC groups to see if their findings would apply to London and CDC groups. Although they assert it does, the paper shows minimal data for these groups and questions directed to them by some people have not been answered.

My cynical side says they put in the part about "main symptom is fatigue" to CYA because this whole thing is a wash and when (not if, when) this is found out, they can use this to backtrack --"Oh, but those folks' main symptoms is post-exertional malaise, not fatigue! [using patient's own assertions that fatigue is not their main symptom, how clever!] This doesn't apply to them!" -- although it truth we all get affected by this study. Anyone want to bet?

I say document, document, document so they'll have to pay.

 

[Enid]

Thanks for this "exposure" specialK82 - it certainly looks like some "convenient" manipulation of phrasing.

 

[SpecialK82]

My cynical side says they put in the part about "main symptom is fatigue" to CYA because this whole thing is a wash and when (not if, when) this is found out, they can use this to backtrack --"Oh, but those folks' main symptoms is post-exertional malaise, not fatigue! [using patient's own assertions that fatigue is not their main symptom, how clever!] This doesn't apply to them!".

You are so right, that sounds exactly like what will happen. This is their "out". How they can use the terms ME or CFS in this study is nothing short of criminal.