Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

[Esther12]

Anyone recorded and produced transcripts of all these radio interviews?

 

[worldbackwards]

Anyone recorded and produced transcripts of all these radio interviews?

You're welcome to do it yourself! Sharpe is just over an hour and a half in here:
http://www.bbc.co.uk/programmes/b06k9wc2

And I think this one starts about the hour mark:
http://www.bbc.co.uk/programmes/b06jtlwp

Best get cracking!

 

[Dolphin]

I think there should be some focus on the table in the Appendix that actually looked at the effects of CBT and GET after treatment.

The authors suggest that it is the CBT and GET after APT and specialist medical care alone that is the reason the differences between the groups disappeared. However the table doesn't bear this out. Indeed those that had 10 or more sessions of CBT and GET tended to have the lowest improvements of the three groups ((i)10+ sessions of CBT and GET post-trial; (ii) 1-9 sessions of CBT or GET and (iii) no sessions of CBT or GET post trial).
(We're looking at the first two columns)

(For the Chalder Fatigue Questionnaire (CFQ), the lower the score the better the result. For the SF-36 physical functioning subscale, it's the opposite: the higher the score the better. The main thing of interest is the change scores i.e. mean difference).

 

[Esther12]

Best get cracking!

anti-like.

Thanks for the links... will add to the list.

 

[Dolphin]

Anyone recorded and produced transcripts of all these radio interviews?

I know where you're coming for (or presume I do): you're mainly interested in what Prof Sharpe said.

 

[Esther12]

I know where you're coming for (or presume I do): you're mainly interested in what Prof Sharpe said.

Yeah. I listened to the short bit of him on early morning radio 4, and didn't think it was that interesting. There's so much going on at the moment it's hard to find time to listen to annoying phone-in shows.

 

[Dolphin]

BMJ on PACE Trial:
Tackling fear about exercise produces long term benefit in chronic fatigue syndrome

(only start is visible)

http://www.bmj.com/content/351/bmj.h5771

 

[adreno]

BMJ on PACE Trial:
Tackling fear about exercise produces long term benefit in chronic fatigue syndrome

(only start is visible)

http://www.bmj.com/content/351/bmj.h5771

Another author joins the list of #icantdoscience morons.

 

[Sean]

There's so much going on at the moment it's hard to find time

My eyes and brain are just about shot from the last 48 hours or so of trying to keep up with everything. It is all moving so fast now.

But in the right direction.

 

[Valentijn]

But in the right direction.

Yeah, it's easy to get caught up in the bad media coverage (generated from bad SMC, Oxford, and researcher spin), but the actual news is extremely good: the PACE followup has proven that CBT and GET are a huge failure. And even better yet, some big names in academia are calling them out on the spinning of null results.

The absolute very best that could possibly be said about CBT and GET is that a few patients having GET or CBT mildly improved slightly faster than the pacing patients. But given the current trends in the data, CBT and GET patients might even be doing worse than the pacing patients at the 5 year followup.

 

[Sidereal]

BMJ on PACE Trial:
Tackling fear about exercise produces long term benefit in chronic fatigue syndrome

(only start is visible)

http://www.bmj.com/content/351/bmj.h5771

Relevant parts:

At the end of the follow-up period, which was a median of 31 months after randomisation, there was little difference in outcomes among patients in any of the original four treatment groups. There was also no significant difference between the original four groups in the proportions of patients reporting a long term deterioration in their general health.

One of the joint first authors, Kimberley Goldsmith, from the Institute of Psychiatry, Psychology and Neuroscience at King’s College London, said, “We found that participants who had originally been given specialist medical care alone or adaptive pacing therapy appeared to be doing as well as those who had cognitive behavioural therapy or graded exercise therapy in the longer term. However, because many had received cognitive behavioural therapy or graded exercise therapy after the trial, it does not tell us that these treatments have as good a long term outcome as cognitive behavioural therapy and graded exercise therapy.”

The other joint first author, Michael Sharpe, professor of psychological medicine at the University of Oxford, explained to a press conference that participants were told on entering the one year trial that they would be given access to additional treatments if they were still ill at the end of the trial. In most cases the additional treatments accessed were cognitive behavioural therapy and graded exercise therapy.

“The people who were originally allocated to the therapies that turned out to be not so good were more likely to have additional treatment,” he said.

Patients were more likely to seek additional treatment if they were originally assigned to specialist medical care alone (63% of the group) or adaptive pacing therapy (50%) than if they were assigned to graded exercise therapy (32%) or cognitive behavioural therapy (31%).

“We could have been more scientific and less humane and just say you have just got to stay in your groups for ever whatever happens, and that would have given a clearer answer but was not really practical,” Sharpe said.

He explained that cognitive behavioural therapy and graded exercise therapy seemed to change the way that participants coped by helping them overcome an understandable concern that doing more would make them worse. “You see a very similar problem with chronic pain,” he added. “I think they get locked into a pattern where they do less, they get more understandably concerned about doing more, and their life kind of constricts around that.”

Commenting on the study, Rona Moss-Morris, professor of psychology as applied to medicine at King’s College London, said that the study was “robust” though with some limitations about which the authors had been clear. “Despite these impressive results, this isn’t time for complacency. Some patients do not benefit from the treatment. We need to do more to understand why. We also need to develop and tailor existing treatment to get larger effects.”

 

[TiredSam]

“We could have been more scientific ... "

Agreed. He makes it sound like an option - shall we be scientific or not today? We can choose either approach, we're the authors after all.

“ ... and less humane"

hardly.

... that would have given a clearer answer but was not really practical

Now he's defining "practical". This from a guy who couldn't organise a long corridor with 5 million quid. But still, his idea of "practical" is worth sacrificing clear answers for. It'll still be "scientific" anyway, or not, and we can choose whether to be scientific or not anyway without affecting the validity of our findings. It's all the same dream, right?

The illusory definitions of "scientific", "humane" and "practical" by this group of authors, considering their subsequent behaviour over the years, is worthy of a study in itself. Can't they just go and be astrologers or burlesque dancers or something?

 

[user9876]

Anyone recorded and produced transcripts of all these radio interviews?

The today program one is on at http://www.bbc.co.uk/programmes/p036fnz0 but not sure how long it will stay.

I put in a complaint about lack of balance quoting Coyne, IoM and the MEA report on harms

 

[Simon]

By popular request (well, @Dolphin asked me to copy over from this thread)

I thought this might be easier to intepret with just the key figures of mean difference for the SMC & APT patients during follow-up, by number of sessions of CBT/GET they had

View attachment 13289

View attachment 13288

added: obviously 1-9 sessions is best ; ok, it's just noise, and treatment or not made no difference.

More detail in @wdb 's excellent graphs

 

[Cheshire]

@Tom Kindlon got his cap back!

http://www.independent.ie/life/heal...thing-changed-when-i-became-ill-34153140.html

'No one chooses to have ME - everything changed when I became ill'
As a new study suggests that ME can be beaten through therapy and exercise, long-term sufferer Tom Kindlon says it's not that simple
Tom Kindlon
Published 30/10/2015 | 02:30

• 1 Comments
• Share

1
Long struggle: Tom Kindlon and his mum Vera, who is now his full-time carer.
Myalgic Encephalomyelitis (ME), sometimes called chronic fatigue syndrome (CFS), is a chronic condition affecting an estimated 12,000 Irish people. People of all ages are affected, with the teens and the 30s the most common ages to initially become ill.

http://www.independent.ie/life/heal...thing-changed-when-i-became-ill-34153140.html

Thanks Tom, very touching

 

[Jonathan Edwards]

BMJ on PACE Trial:
Tackling fear about exercise produces long term benefit in chronic fatigue syndrome

(only start is visible)

http://www.bmj.com/content/351/bmj.h5771

Er, no BMJ, it didn't. Are they all this dumb?
I fear so.
But hang on a minute. Did nobody read the paper and think, er, this makes no sense?
I fear not.

 

[Bob]

BMJ on PACE Trial:
Tackling fear about exercise produces long term benefit in chronic fatigue syndrome

Er, no BMJ, it didn't. Are they all this dumb?

How can the editors at a top scientific journal not understand the most basic principles of scientific research methodology? It's so depressing. Unfortunately, it's not just the BMJ who don't understand; it's widespread.

 

[Gijs]

Er, no BMJ, it didn't. Are they all this dumb?
I fear so.
But hang on a minute. Did nobody read the paper and think, er, this makes no sense?
I fear not.

Did they forget Primum non nocere?

 

[anciendaze]

Recall that PACE authors chose a subset of 3158 patients referred by NHS doctors as "CFS" patients, of which 640 completed the trial. The authors also stated that about 40% of the study group were non-responders. This implies that their positive results apply to only 384 patients, using criteria which cannot be independently confirmed. Neither can claims of "recovery".

I've said elsewhere that it looks like PACE authors deliberately selected a few percent of patients referred for "CFS" who did not have the long-term illness at all. This is now being said to apply to the 80-90% they did not test, "proving" there is no chronic disease. This is actually strong evidence that therapy had no long-term effect, and all selected patients experienced some degree of recovery unrelated to therapy. It tells you nothing about the majority of "CFS" patients, who were not selected.

The assurance that these patients were in fact representative of the entire population with the disease is simply an unsupported assertion of the authors' diagnostic infallibility.

Added: when you claim that 30% of diagnoses by other doctors are in error, you should expect questions about the reliability of your own diagnoses. Might you have been wrong in, say, 12% of cases, amounting to 384 individuals?

Added later: just for those who have forgotten whatever they once knew about diagnostic error rates in medicine, I'll try to put this in context. As presently defined by the criteria used in the PACE study CFS is either a diagnosis by exclusion or a psychiatric diagnosis. You might compare this to systemic lupus erythematosis (SLE) or multiple sclerosis (MS). (See also "It's never Lupus.") You can also check consistency among pure psychiatric diagnoses like schizophrenia. A 12% error rate would not stun anyone except pathologists, and they would not be involved in a disease which produces no samples they can study.

 

[Sean]

@Tom Kindlon got his cap back!

I recognise that Tom!