Telegraph Tomorrow - Exercise and positivity can overcome ME

[Aurator]

They knew their pre-PACE evidence was pretty rubbish.

I'm still not getting the message through, it seems, or I've fundamentally misunderstood something.

If the pre-PACE evidence was rubbish then why is it that same pre-PACE evidence, and not evidence from PACE itself, that is being used, according to Charles, as the basis for the CBT/GET that is dished out today? At the risk of repeating myself, why was PACE commissioned in the first place if it was so clearly not needed in order to set guidelines?

 

[Aurator]

Dad says yes.

But it has a very different headline in the printed version: "Positive thinking isn't a cure-all."

 

[worldbackwards]

why is it that same pre-PACE evidence, and not evidence from PACE itself, that is being used, according to Charles, as the basis for the CBT/GET that is dished out today?

NICE was published in 2006/7, pre-PACE and based on the aforementioned York Review. This basically ignored one-off trials and all international research, obliterating at a stroke anything other than positive CBT/GET research IIRC. It presented a fait accompli - use these treatments because they are, as Sharpe is still saying, "the only game in town".

PACE was intended to shore up this creaking position and I believe it says in the guidelines that they are waiting on the results of PACE to do that (or otherwise). Which may suggest a(nother) reason why it seems to have been railroaded into particular findings.

 

[Aurator]

NICE was published in 2006/7, pre-PACE and based on the aforementioned York Review. This basically ignored one-off trials and all international research, obliterating at a stroke anything other than positive CBT/GET research IIRC. It presented a fait accompli - use these treatments because they are, as Sharpe is still saying, "the only game in town".

Sorry, but this still doesn't answer my question, which I did believe was a simple one. I don't think I can state my question any more clearly than I have done in post 261, and it remains unanswered: "why was PACE commissioned in the first place if it was so clearly not needed in order to set guidelines?"

 

[Esther12]

They set guidelines based on the evidence available to them, even if the evidence is rubbish.

I don't think anyone could argue that their low standards for making treatment recommendations to patients mean that no further research is necessary. Also, 'pacing' had never been assessed in a controlled trial.

 

[Aurator]

They set guidelines based on the evidence available to them, even if the evidence is rubbish.

I don't think anyone could argue that their low standards for making treatment recommendations to patients mean that no further research is necessary. Also, 'pacing' had never been assessed in a controlled trial.

Right, so if the guidelines are still based entirely on pre-PACE evidence, this can only constitute an acknowledgement by the people who set the guidelines that PACE has contributed nothing in the way of evidence on which to set guidelines for managing ME/CFS. And, if these people have shown by their actions that PACE is at best redundant, inasmuch as public policy ignores it, why and how can the diehard proponents of PACE continue to defend it as having some value? Why, in order to silence them, is it not a simple matter of making reference to PACE's utter failure to set public policy? The science it contains or doesn't contain need not even enter the discussion.

 

[duncan]

Intent?

If PACE falls, and intent is somehow demonstrably involved, the intent factor naturally may extend back.

 

[Esther12]

Right, so if the guidelines are still based entirely on pre-PACE evidence, this can only constitute an acknowledgement by the people who set the guidelines that PACE has contributed nothing in the way of evidence on which to set guidelines for managing ME/CFS. And, if these people have shown by their actions that PACE is at best redundant, inasmuch as public policy ignores it, why and how can the diehard proponents of PACE continue to defend it as having some value? Why, in order to silence them, is it not a simple matter of making reference to PACE's utter failure to set public policy? The science it contains or doesn't contain need not even enter the discussion.

This is from BACME:

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

http://www.bacme.info/aboutbacme/pace_trial.html

 

[Wildcat]

.
Following the CMOs Workiing Group Report of 2002, there was announced a ring-fenced amount of £11.2 million for ME (cant remember the source of funding, DoH probably.)

£8.5 million was allocated to the setting up the NHS 'CFS/ME' Clinics, the remainder was divided between funding for the PACE Trial and funding the FINE Trial., via the MRC Clearly PACE aquired additional funding along the way, including £1 million from the DWP.
.

 

[Aurator]

This is from BACME:



http://www.bacme.info/aboutbacme/pace_trial.html

Sorry, I don't see how this answers my question. Bacme is not NICE and vice versa.

 

[Esther12]

That was BACME showing how it could be argued that PACE was of value.

 

[Barry53]

"Chronic fatigue syndrome is not actually a chronic illness and sufferers can overcome symptoms by increasing exercise and thinking positively, Oxford University has found"

I know I am replying to an old post, but I've just joined PR and am dipping into the various threads.

One of the things that always bugs me with journalist speak, is how they always put a highly contentious statement at the front of a sentence, followed by the clarification that it is simply what someone claims. For the media organisation it makes their piece much more sensational, but it is always the first part of the sentence that sticks in people's minds, and distorts perceptions. I find it unethical, because journalists know what is happening.