'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

[biophile]

Dolphin posted an image on the main PACE Trial forum and I typed it out so that it can be quoted elsewhere.

http://issuu.com/kingscollegelondon/docs/making_a_difference_institute_of_ps

Making a difference | Institute of Psychiatry, Psychology & Neuroscience

World-leading research from the Institute of Psychiatry, Psychology & Neuroscience (IoPPN) at King’s College London has made, and continues to make, an impact on how we understand, prevent and treat mental illness and other conditions that affect the brain.

#22: CBT FOR CHRONIC FATIGUE SYNDROME

Chronic fatigue syndrome (CFS) affects approximately 250,000 people in the UK. The profound and disabling exhaustion isn't alleviated by rest, and other symptoms can incude joint and muscle pain, headaches, disturbed sleep and short-term memory problems.

People might initially develop the fatigue as a result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.

When we first piloted cognitive behaviour therapy (CBT) for CFS in 1991 there were no established treatments for CFS.

CBT for CFS encourages people to gradually build up and resume regular daily activities; to identify and plan how to deal with triggers that might make symptoms worse; and to learn how to manage and reduce the symptoms.

We developed a version of the specialised therapy for young people that involves the whole family. Family-based CBT is routinely offered to 11 to 18-year-olds diagnosed with CFS. For them, the consequences of CFS are dire, impacting on education, and physical and social development as a result of long periods out of school.

The choice between rest and activity as a treatment for CFS has often been at the core of a controversial debate. Our researchers were involved in the landmark PACE trial which showed that CBT and Graded Exercise Therapy (GET, also recommended by NICE) for CFS were more effective and more cost-effective than adaptive pacing therapy - where people balance rest with activity - or specialist medical treatment.

One year after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.

Professor Trudie Chalder

I was going to also post a more accurate version for contrast but I couldn't be bothered.

A few points though:

CBT/GET are not "treatments"; these therapies do not tackle the underlying pathophysiology. The published evidence disputes the allusion that patients are gradually building up and resuming regular daily activities. The PACE Trial was highly controversial, non-blinded (active therapy groups were told how positively effective the therapies were), and only showed modest self-reported benefits for a small minority of participants. It used a diagnostic criteria of chronic fatigue only, did not use any other CFS or ME criteria properly. APT is not pacing as practiced by others. The claim that "a fifth of people had recovered and were able to partake in life without significant fatigue" is fictitious. Etc.

 

[eafw]

Could it be that much of the apparent success of CBT is due to it measuring attitudes after brain washing? How is this confounding issue being ignored?

I don't think it even requires brainwashing, just the fact that most people (in Anglo culture at least ?) give a more positive response than is warranted on questionnaires. Partly politeness, partly because they have a mood boost - not a cure - from the social connection with another person, partly becasue self-assesment is very unreliable

It's very difficult to get most people to even recognise let alone give realistic and properly critical feedback on any intervention and for behavioural/psych/quackery in general it's particularly skewed, so studies like PACE that rely on self-reporting are always on very dodgy ground.

The claim that "a fifth of people had recovered and were able to partake in life without significant fatigue" is fictitious.

Well they're just telling lies. Is there any accountability at all for these people ?

 

[biophile]

Well they're just telling lies. Is there any accountability at all for these people ?

Good question. A lie is deliberate and it may be difficult to prove intent. But how could the principal investigators of the PACE Trial be unaware of the multiple problems with their recovery criteria after years of criticism and controversy? It is difficult to escape the conclusion that there is a significant degree of ignorance, incompetence, and/or deception.

As for accountability, I doubt there is much. The Independent Press Standards Organisation (IPSO), formerly the Press Complaints Commission (PCC), may not cover that particular type of publication (?):

https://www.ipso.co.uk/IPSO/makingacomplaint.html

The publisher, Issuu, has a legal terms of service page and that's all the relevant information I could find so far:

http://issuu.com/legal/terms

I searched for "accura" and most of the results were about accuracy of other information not relating to the published documents themselves (e.g. user account details, promotions of the uploaded content, a disclaimer that Issuu does not endorse content or guarantee accuracy). However I did find this: "You agree not to commit any act of the following prohibited conduct: [...] use the Issuu Service in violation of any local, state, national, or international law, including, without limitation, laws governing intellectual property and other proprietary rights, and data protection and privacy or post, upload, or distribute any defamatory, libelous, or inaccurate User Submissions or other content;"

Issuu also reserves the right to remove or edit content. Alternatively someone could complain to KCL. Personally I think achieving any meaningful result here is unlikely. One would need to convince the assessor while KCL and Chalder will probably claim academic freedom, use their authority to stamp over any counter-arguments based on facts and reasoning, and blame the complaint itself on unreasonable militants who harass researchers.

 

[Gijs]

I have never seen any recovered ME/CVS patënt due to CBT, if this is true we would have hear much more stories about this. Fatique is not ME. What about breathing problems, gut problems, hart problems, dizzyness, weakness etc... are these symptoms gone to?

 

[Graham]

Good question. A lie is deliberate and it may be difficult to prove intent. But how could the principal investigators of the PACE Trial be unaware of the multiple problems with their recovery criteria after years of criticism and controversy? It is difficult to escape the conclusion that there is a significant degree of ignorance, incompetence, and/or deception.

I fully sympathise with this point of view, Biophile, as well you know. But I believe that there is something strange about the way that the medical profession work: they seem to have more respect for hierarchy and experience than scientific rigour. It wouldn't surprise me to find that the psychiatrists and psychologists supporting CBT (and let's not forget that they could well be in a minority) actually deeply believe that they are right, that they are completely working for the patient, and that the studies and results do not reflect what they know to be true, largely because of patients' attitudes. They seem to inhabit more of a cult than a science. That's why they get so angry and accuse critics of being part of an angry conspiracy.

 

[eafw]

A lie is deliberate and it may be difficult to prove intent.

I think it's very unlikely that we could "prove" it, but we know they are not being honest

It is difficult to escape the conclusion that there is a significant degree of ignorance, incompetence, and/or deception.

They live in a world where they are so used to getting away with this sort of dissembling - without challenge - that it has becomes the norm for them. The facts are secondary to the spin and the narrative that they have already decided upon.

Personally I think achieving any meaningful result here is unlikely.

Short term maybe not, not directly a press issue here either. But longer term we need to be gathering this up as evidence. The accountability I am thinking of is mostly in terms of their academic reputation and credibility and then the impact upon policy. They are so used to operating without challenge, but it it is time we started dragging this more and more into the light. There are blatant untruths being propogated by these people and serious harm being done.

They seem to inhabit more of a cult than a science. That's why they get so angry and accuse critics of being part of an angry conspiracy.

It is political beliefs that drive them rather than (or at least as much as) science. Then add in, as I say above, that they have spent years getting away with this crap, and you have an culture in which their sense of reality and entitlement will be quite warped. This is also what I mean by accountability, there are no checks and balances, no "outsiders" allowed to interfere to bring them back down to earth from the certainty of their beliefs. So yes elements of cult-like behaviour there, but common, and not unexpected, in those environments.

 

[Kyla]

To psychologize the psychologizers...Confirmation Bias, pure and simple.
http://www.newyorker.com/science/maria-konnikova/i-dont-want-to-be-right
"When there’s no immediate threat to our understanding of the world, we change our beliefs. It’s when that change contradicts something we’ve long held as important that problems occur."
These beliefs are so entrenched for this group that I don't think any amount of objective evidence will ever change their minds.

 

[Kyla]

To psychologize the psychologizers...Confirmation Bias, pure and simple.
http://www.newyorker.com/science/maria-konnikova/i-dont-want-to-be-right
"When there’s no immediate threat to our understanding of the world, we change our beliefs. It’s when that change contradicts something we’ve long held as important that problems occur."
These beliefs are so entrenched for this group that I don't think any amount of objective evidence will ever change their minds.

...and I didn't mean that to sound overly negative. I just think this hinges on continuing to build up a rock-solid evidence base that is undeniable to the rest of the world, and on getting that message widely disseminated. at which point a small band of naysayers (even if they are powerful) is meaningless.

 

[SOC]

...and I didn't mean that to sound overly negative. I just think this hinges on continuing to build up a rock-solid evidence base that is undeniable to the rest of the world, and on getting that message widely disseminated. at which point a small band of naysayers (even if they are powerful) is meaningless.

It doesn't sound overly negative to me. Based on what we have already seen and heard from this group, it would be naive to expect they will ever change their minds. Our best hope is that they eventually become toothless tigers.

 

[alex3619]

it could be due to brainwashing, it might not be. No one knows and no one wants to find out.

The supposed efficacy of treatment is directly related on how much they change thinking. That is the whole point of CBT. Their outcome measures are based on changes in thinking, not objective outcomes such as functional capacity. So they have a subjective interpretation of functional capacity.

There is not much doubt CBT can alter thinking patterns in at least a subgroup. The weakness is that they do not then establish that such changes have real world impact, including functional capacity, work outcomes, quality of life, etc.

 

[biophile]

Not directly PACE Trial related, but another example of lying about recovery:

http://www.northerntrust.hscni.net/about/2287.htm

"As a result, many patients have been able to return to employment or training."

Turns out someone submitted an FOI request and exposed the lie:

http://sallyjustme.blogspot.co.uk/2015/03/invisibleme-symposium.html

"She told Mr Deboys that she had Freedom of Information replies that clearly demonstrated the fact that only ONE person had returned to full-time employment to date! He agreed that the word 'many' should be deleted."

Also, an interesting conversation unfolding on Twitter between patients and Wessely:

https://twitter.com/WesselyS/status/573743192253792256

Wessely is defending the effectiveness of CBT for CFS. Someone argued that CBT does not increase a range of measures of function. Wessely claims CBT is as effective as innumerable conventional treatments for other conditions. Someone asked for specific examples, and said that CBT is no better than a (poor) placebo and patients should be rightly informed when treatments are no better than that. Wessely said that "The placebo is one of the best interventions we have..".

 

[lansbergen]

Wessely says that "The placebo is one of the best interventions we have..".

That says it all

 

[Ritto]

Wessely says that "The placebo is one of the best interventions we have..".

To which 'we' does he refer?

 

[Sean]

"The placebo is one of the best interventions we have.."

Compared to what?

 

[A.B.]

Wessely says that "The placebo is one of the best interventions we have..".

Hahahaha.

 

[alex3619]

Compared to what?

Compared to the rest of his therapies?

 

[chipmunk1]

That says it all

At least he admits that most or all interventions are no or not significantly better than a placebo.

Time to close up shop and retrain as a faith based healer.

 

[alex3619]

At least he admits that most or all interventions are no or not significantly better than a placebo.

Time to close up shop and retrain as a faith based healer.

Their diagnoses and treatments are already based on faith. Its not like most of it is a science. Some of it is scientific, and some of it uses science, but all psych diagnoses are invented categories, invented syndromes, and outcome determination is often weak. Psychiatry can do much better than it has been doing. Much much better. I do think its going to take a paradigm shift though. The current paradigms are broken, and have been failing for way over a century.

 

[A.B.]

If you have a treatment that works, there is no reason to be afraid of conducting studies that can conclusively prove it and dispel any doubts.

The implication is that CBT, GET, antidepressants, ECT, psychanalysis, etc. are probably worthless for most if not all problems they're being promoted for, and that the psychs know this and therefore avoid looking too closely.

 

[jstefl]

If exercise could cure me, I would be cured.

I spent years doing my best to exercise my way back to health. I used to walk four times a day, anywhere from 3/4 to 1-1/4 miles at a time. I was walking at least three miles a day for over 12 years. I never got to the point where I could keep up with my wife, who at the time wasn't exercising at all.

I was never able to increase my stamina to any measurable degree. I can't say that it made me worse keeping up that schedule, but it never made me any stronger either. Of course, if I pushed too hard the result was always PEM.

I spent some time with several mental health types with absolutely no progress what so ever. I am firmly convinced that it is all about the money for them. If they could fix me, the money would stop, so where is the incentive? It is my opinion that the vast majority of these people are just parasites, raising the cost of health insurance for everybody.

That sounds pretty harsh, but it is my firmly held belief.

John