To the moderators of this forum. Misleading information.
Posted: Tue Aug 20, 2013 2:37 pm
To the moderators of this forum.
I am very concerned about the amount of inexact, ambiguous or misleading information that is being promoted by some of the 'experts' on the forum, and that has been posted on the forum by the principal investigators of the PACE trial.
The principal investigators of the PACE trial suggested that about 60% of patients improved after treatment with CBT/GET in the PACE trial. In fact, the best results achieved in the PACE trial were that up to 15% of participants improved in either self-reported fatigue of function when CBT or GET were added to SMC. (SMC being the control.) The 60% figure relates to participants who received the treatment (CBT or GET) plus SMC, so it includes the proportion of participants who improved in the SMC control group, as a result of treatment with SMC or because of natural fluctuations.
Also, the principal investigators talked about 'recovery', but the PACE trial did not report on recovery in lay terms, but defined a 'recovery' in very specific terms. The trial's definition of 'recovery' did not reflect what patients or clinicians would recognise as a recovery. (i.e. participants reported as 'recovered' could have severe disability, or could even have had physical function that deteriorated after treatment with CBT/GET.) Based on the results of the PACE trial it is unfair and medically inappropriate to tell patients to expect a recovery after CBT or GET, when a 'recovery' can indicate severe disability or even deterioration.
CBT and GET will only help a minority of patients feel better about their illness.
In the PACE trial, only up to an additional 15% of patients felt at least minimally better (self-reported fatigue and physical function) when CBT or GET were added to SMC.
But for objectively measured disability, the improvements were non-existent, except for a small (clinically insignificant) improvement when GET was added to SMC.
The evidence in other trials which investigated CBT/GET have had very similar results.
There is no evidence that demonstrates effective sustainable overall improvement in the actual illness, or in actual disability, when objectively measured, after treatment with either CBT or GET.
The PACE trial found that CBT and GET were moderately effective for self-reported outcomes.
Also, there is not a good evidence basis for CBT or GET to be recommended to house-bound or bed-bound patients. The PACE trial, for example, did not investigate house-bound patients.
Comments and recommendations about CBT and GET need to be put into context, so that patients understand what to expect, especially as there are many reports of patients being harmed by CBT and GET.
Because of the nature of CFS/ME, and the symptom of post-exertional malaise, exposure to unsafe levels of exertion can be harmful.
There is plenty of research evidence to support this.
Some research suggests that harm as a result of CBT or GET may depend on the quality of the therapy and therapist.
However, the PACE trial investigators have so far refused to release the deterioration data (as an equivalent measure to the improvement data), so patients and clinicians cannot know whether to expect deterioration from CBT or GET.
I ask that the moderators of the forum correct or delete the misleading information, and also ask the 'experts' to qualify their information, rather than recommending CBT or GET to all patients, without explaining that only very modest improvements should be expected, by only a small minority of patients, and that there is no evidence basis for severely affected CFS/ME patients.
I am very concerned about the amount of inexact, ambiguous or misleading information that is being promoted by some of the 'experts' on the forum, and that has been posted on the forum by the principal investigators of the PACE trial.
The principal investigators of the PACE trial suggested that about 60% of patients improved after treatment with CBT/GET in the PACE trial. In fact, the best results achieved in the PACE trial were that up to 15% of participants improved in either self-reported fatigue of function when CBT or GET were added to SMC. (SMC being the control.) The 60% figure relates to participants who received the treatment (CBT or GET) plus SMC, so it includes the proportion of participants who improved in the SMC control group, as a result of treatment with SMC or because of natural fluctuations.
Also, the principal investigators talked about 'recovery', but the PACE trial did not report on recovery in lay terms, but defined a 'recovery' in very specific terms. The trial's definition of 'recovery' did not reflect what patients or clinicians would recognise as a recovery. (i.e. participants reported as 'recovered' could have severe disability, or could even have had physical function that deteriorated after treatment with CBT/GET.) Based on the results of the PACE trial it is unfair and medically inappropriate to tell patients to expect a recovery after CBT or GET, when a 'recovery' can indicate severe disability or even deterioration.
CBT and GET will only help a minority of patients feel better about their illness.
In the PACE trial, only up to an additional 15% of patients felt at least minimally better (self-reported fatigue and physical function) when CBT or GET were added to SMC.
But for objectively measured disability, the improvements were non-existent, except for a small (clinically insignificant) improvement when GET was added to SMC.
The evidence in other trials which investigated CBT/GET have had very similar results.
There is no evidence that demonstrates effective sustainable overall improvement in the actual illness, or in actual disability, when objectively measured, after treatment with either CBT or GET.
The PACE trial found that CBT and GET were moderately effective for self-reported outcomes.
Also, there is not a good evidence basis for CBT or GET to be recommended to house-bound or bed-bound patients. The PACE trial, for example, did not investigate house-bound patients.
Comments and recommendations about CBT and GET need to be put into context, so that patients understand what to expect, especially as there are many reports of patients being harmed by CBT and GET.
Because of the nature of CFS/ME, and the symptom of post-exertional malaise, exposure to unsafe levels of exertion can be harmful.
There is plenty of research evidence to support this.
Some research suggests that harm as a result of CBT or GET may depend on the quality of the therapy and therapist.
However, the PACE trial investigators have so far refused to release the deterioration data (as an equivalent measure to the improvement data), so patients and clinicians cannot know whether to expect deterioration from CBT or GET.
I ask that the moderators of the forum correct or delete the misleading information, and also ask the 'experts' to qualify their information, rather than recommending CBT or GET to all patients, without explaining that only very modest improvements should be expected, by only a small minority of patients, and that there is no evidence basis for severely affected CFS/ME patients.