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PACE Trial Recovery Rates

Sean

Senior Member
Messages
7,378
Thanks for this, Peter. Good stuff.

One of the most important features of that data (as shown in the graphs) is that the vast bulk of any 'improvement' comes in the first 3 months or so, then starts levelling out, with minimal further improvement.

And that is coming off a very low baseline.

Definitely no recovery going on there.
 
Messages
32
Thanks all. I agree Sean, no recovery happening but I suspect a common phenomenon is occurring. Clients (especially getting 'free' therapy as in research) are not only beholden, they can actually fear appearing critical. Personally, I reckon I must have told doctors, friends and relatives at least 20 times, 'I think I'm a bit better'. It was a complete lie - I was unconsciously trying to spare other people's feelings and letting my natural optimism override my essentially honest nature and common sense. I bet they wish they'd had me in the PACE Trial - I'd probably be down as 'recovered'.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Its a mask. If intimidated or feeling disempowered we can present to the world as normal as we can. Its why asking for proof of recovery via questionairre is an invalid approach. Objective measures like constant activity monitoring (e.g. actometer) is required.

Early improvement then tapering off suggests to me that its a case of "oh my, somebody is helping, I feel a bit better" rather than real improvement.

Where did the date for this analysis come from? The restricted published data, is that from the trial itself? Or additional material?

From the partial improvement seen my guess is most improvement is from natural course of illness in a subset of patients. Is there anything to back this view up or contradict it?

In particular are there any outlier results? We really need the raw data and until its released any analysis will be disputed. Once its released though we will have more data to show what really happened. We soooooo need that data.
 
Messages
32
Hi Alex. The date on the analysis came from me, the PACE Trial was published in the Lancet in Feb 2011. Recruitment started in May 2006 and all data was collected in 2010. One of the participant newsletters (2008) mentions participants will be recontacted after 2.5 years for an update. No news on this yet.
 

Dolphin

Senior Member
Messages
17,567
Dear All,

The PACE Trial Recovery Rates
An M.E. friendly document with graphs and charts analysing the recovery rates for participants in the PACE Trial.

http://www.scribd.com/doc/115343781 (doc or pdf)
https://docs.google.com/open?id=0B4Hu7D6DycascHlVUUpNZ3o0NkU
The google doc displays with large text and graphics and zoom facilities.

Best Wishes,
Peter
Good stuff, Peter. Thanks.

There is an error, although it doesn't affect most of what you say:
A Chalder Fatigue Questionnaire with Likert scoring of 1, 1, 1, 1, 1, 1, 1, 1, 3, 3, 3 = 17 would have a bimodal score of 3
 

Enid

Senior Member
Messages
3,309
Location
UK
Well all I can say a ticket to the gym from my first GP (GET) or "all in your mind" (CBT) in A & E - ordinary docs - doesn't work and is a sure way to the hell in medicine here if so unlucky. Are they so blind in the UK (probably yes) - unable to stand, passings out, unable to speak let alone swallow cured by these "therapies" ..........worse than a joke.
 
Messages
13,774
Nice one Peter.

This actually got cited in this paper (reference 61):

Chronic fatigue syndrome/fibromyalgia: a “stress-adaptation” model

Boudewijn Van Houdenhove, Patrick Luyten & Stefan Kempke

What about the cognitive-behavioral model of CFS?

Some researchers assume that, although CFS may be precipitated by a physical event (such as a viral infection), the illness is subsequently perpetuated by psychological and behavioural factors. According to this model, faulty cognitions (e.g., rigid somatic attributions and catastrophizing), sensory hypervigilance, activity avoidance, and enhanced interoception may play a key role in the etio-patho genesis of the illness.[54,55]

Certainly, a cognitive-perceptual bias and inadequate coping behaviour have been demonstrated in some CFS patients [56] but these findings have not always been confirmed.[57] Moreover, a purely cognitive-behavioural model of CFS seems less explanatory for the pathophysiological disturbances identified so far and more difficult to relate to findings about the patients’ history, personality, and premorbid lifestyle (as reviewed above).

Nonetheless, the latter model is the main rationale of cognitive-behavioral therapy (CBT) and graded exercise training (GET), which are currently both recommended as first-line treatments in CFS/FM. Particularly in the CFS literature, it has been stated that patients should be informed about the possibility that CBT may lead to “full recovery,” in order to enhance outcome.[58] Although there is evidence to support the efficacy and effectiveness of CBT and GET in subsets of CFS/FM patients,[59,60] these treatments have also been strongly criticized - not in the least by members of the ME commrmity - since relevant studies may be flawed because of diagnostic heterogeneity, recruitment bias, the use of outcome criteria with too little relevance for “real life" functioning, and the questionable definition of "recovery.”[14,61]
 

biophile

Places I'd rather be.
Messages
8,977
Nice one Peter. This actually got cited in this paper (reference 61):
Although there is evidence to support the efficacy and effectiveness of CBT and GET in subsets of CFS/FM patients,[59,60] these treatments have also been strongly criticized - not in the least by members of the ME community - since relevant studies may be flawed because of diagnostic heterogeneity, recruitment bias, the use of outcome criteria with too little relevance for “real life" functioning, and the questionable definition of "recovery.”[14,61]

Reference 14 is Malcolm Hooper's "Magical medicine: how to make a disease disappear".