Science Media Centre expert reaction to Journal of Health Psychology’s Special Issue on The PACE Tri

[anniekim]

But from what I hear on PR I cannot work out why anyone should think deconditioning would explain sensitivity to noise, pain, PEM, etc. etc. And it cannot possibly explain 'crashes' - that would be a physiological impossibility.

I agree @Jonathan Edwards. I could not make head or tail of a neuropsychiatrist, Alan Carson, yesterday on twitter responding to somebody pointing out that people laid up with broken legs dont get swollen lymph nodes, fever and sensitivity to noise when start exercising again that some do? Photo of tweet exchange attached.

 

[Valentijn]

The patients who were treated with GET in PACE were presumably treated by physios working on the basis that the patients were mistakenly thinking that they could not do more exercise and just needed encouraging into thinking that with more activity they would feel better.

I'm not sure it was entirely physios delivering GET in PACE. In other studies at least they haven't been able to recruit enough of them, so they used psychologists or other therapists.

With the notable exception of Jessica Bavinton, and probably a few others similarly lacking in any sort of sense, physiotherapists generally know too much about the human body to buy into the principals and application of GET.

 

[Jonathan Edwards]

I'm not sure it was entirely physios delivering GET in PACE. In other studies at least they haven't been able to recruit enough of them, so they used psychologists or other therapists.

With the notable exception of Jessica Bavinton, and probably a few others similarly lacking in any sort of sense, physiotherapists generally know too much about the human body to buy into the principals and application of GET.

OMG not the pale blue cardigans? Surely you need a dark blue one for exercise therapy. Sorry, stick to the point.

But that is amazing - so exercise therapy was given by psychotherapists? Who of course could not possibly know what CBT is or let it flavour their approach?

That seems pretty serious. CBT is pretty much defined as what a psychotherapist does in this context since we have no real idea what goes on. The pale blue cardigan is the closest we have to a chemical formula. At least I thought the therapy would come from girls with big quads and ... sorry, I am in a slightly mischievous mood.

 

[slysaint]

The patients who were treated with GET in PACE were presumably treated by physios working on the basis that the patients were mistakenly thinking that they could not do more exercise and just needed encouraging into thinking that with more activity they would feel better.

Is there anything in the GET manual for therapists that instructs them how to carry out the GET eg what they should be telling the patient/ how they should be 'encouraging' them? In the film Voice from the Shadows there is a brief bit of film showing Naomi undergoing GET (not the PACE trial).
But similarly doesn't the CFS form of CBT not also encourage GET?

 

[Jonathan Edwards]

I agree @Jonathan Edwards. I could not make head or tail of a neuropsychiatrist, Alan Carson, yesterday on twitter responding to somebody pointing out that people laid up with broken legs dont get swollen lymph nodes, fever and sensitivity to noise when start exercising again that some do? Photo of tweet exchange attached.

Oh, I see Dr Carsons, it is usual for people getting back to walking about to find noise bothers them so much they have to go to their room? Pull the one with the plaster on, Alan. This is fatuous.

 

[Aurator]

I was a committed amateur athlete before I came down with this illness. I've been fortunate enough to be able to continue with some physical activity since becoming ill. Even though this activity is a fraction of what I used to be able to do when I was well, it's still significantly more than my elderly parents do, both of whom have quite debilitating dementia.

However, even they are not seriously physically deconditioned as far as being able to do everyday activities such as climbing the stairs, walking from the car to the front door etc. is concerned. What's more, they rarely if ever complain of or show signs of fatigue or any of the other symptoms commonly reported by ME/CFS patients.

On the other hand my own symptoms of fatigue, sore throat, digestive problems, muscle soreness etc. are often quite pronounced, and feeling physically awful and incapacitated is a fact of life. Given that I'm more active than my parents, how can my symptoms be the effect of deconditioning? I'm afraid the deconditioning hypothesis looks very much like a glib attempt to attribute ME/CFS patients' symptoms to factors within, rather than beyond, their control.

It's difficult to express in plain enough terms the simple truth of my experience of being ill, which is that my symptoms and my circumscribed lifestyle are not a result of deconditioning but are rather matters entirely beyond my control, and that there is something very clearly physically wrong with me that was not wrong with me before I fell ill with the virus that this present illness started with five years ago.

I've been saying this all along, as I'm sure nearly every patient with this awful illness has, and yet the testimony we give (however articulately and rationally it's given) of our experience of being ill is still widely disbelieved. It's a very real kind of dystopia we're living in.

 

[Jonathan Edwards]

Is there anything in the GET manual for therapists that instructs them how to carry out the GET eg what they should be telling the patient/ how they should be 'encouraging' them? In the film Voice from the Shadows there is a brief bit of film showing Naomi undergoing GET (not the PACE trial).
But similarly doesn't the CFS form of CBT not also encourage GET?

I asked for counterarguments but I am happy for people to make things even worse. I think it might be harder to claim that the CBT involved GET, but who knows. That was actually my central point when I refereed - who knows what modality is doing what when we have no standardisation or dose response.

I have never seen a PACE GET manual but I know a man who has - and no doubt he will post in a minute.

 

[Marco]

Sound familiar? Isn't this what they call CBT? Or at least that sort of CBT that ME/CFS patients get. So the arms in PACE are really Standard care; pacing ; CBT; CBT plus GET. The last two showed no real difference in outcome so there is no reason to attribute any improvement to exercise therapy.

OK, it cannot be that easy. Someone is going to point out I have missed something. But what?

If I recall correctly, in the PACE published outcomes, on certain if not most measures, the GET arm performed a little better than the CBT arm which suggests to me no reason to attribute much improvement to CBT (which in all honesty was the preferred therapy of the BPS crowd otherwise they'd just hand us over to physios and in that respect must have come as a bit of a disappointment).

On the other hand CBT is cognitive behavioural therapy where the cognitive is 'false illness beliefs' and the behaviour to be re-established is activity/exercise. The two arms are actually an integral part of the 'therapy'.

I believe they were separated to demonstrate that GET wasn't harmful and for no other reason. Wessely was correct in calling PACE a 'thing of beauty'. It was designed to flatter the preferred therapies and to debunk (a Wessely speciality) the only remaining objections of harm and an alternative (pacing).

 

[trishrhymes]

.. sorry, I am in a slightly mischievous mood.

Please don't stop, you're making me happy!

 

[Jonathan Edwards]

It's difficult to express in plain enough terms the simple truth of my experience of being ill, which is that my symptoms and my circumscribed lifestyle are not a result of deconditioning but are rather matters entirely beyond my control, and that there is something very clearly physically wrong with me that was not wrong with me before I fell ill with the virus that this present illness started with five years ago.

I've been saying this all along, as I'm sure nearly every patient with this awful illness has, and yet the testimony we give (however articulately and rationally it's given) of our experience of being ill is still widely disbelieved. It's a very real kind of dystopia we're living in.

I realise I cannot experience what you experience but I think I get the message. It is not that hard or unfamiliar.
You feel ill.

 

[Jonathan Edwards]

If I recall correctly, in the PACE published outcomes, on certain if not most measures, the GET arm performed a little better than the CBT arm which suggests to me no reason to attribute much improvement to CBT (which in all honesty was the preferred therapy of the BPS crowd otherwise they'd just hand us over to physios and i that respect must have come as a bit of a disappointment).

On the other hand CBT is cognitive behavioural therapy where the cognitive is 'false illness beliefs' and the behaviour to be re-established is activity/exercise. The two arms are actually an integral part of the 'therapy'.

I believe they were separated to demonstrate that GET wasn't harmful and for no other reason. Wessely was correct in calling PACE a 'thing of beauty'. It was designed to flatter the preferred therapies and to debunk (a Wessely speciality) the only remaining objections of harm and an alternative (pacing).

Nice backhand Marco.

 

[thijs]

But similarly doesn't the CFS form of CBT not also encourage GET?

The dutch CBT is similar to the GET used in GETSET. Also with a walking schedule.

In my opinion it's just two different names for the same treatment.

 

[trishrhymes]

I think the difference between CBT and GET is in what the therapists say to patients.

The CBT therapists were specifically trained to 'help' patients overcome their 'false illness beliefs' that were making them afraid to exercise - thus encouraging them to believe that it was OK to exercise, and to start doing so, but not to any fixed plan.

Whereas the GET therapists were trained not to challenge beliefs, but to help patients set weekly targets of increasing activity, eg by walking for a bit longer.

The net result is the same, patients were encouraged in both groups to exercise more. Whether they did or not, is of course another question - which can't be answered since actometers weren't used.

...............................

On the subject of deconditioning, I am another example showing it's nonsense. I had 6 months mostly in bed 40 years ago with what was probably glandular fever. I wasn't improving, and someone told me to try 3 weeks complete bed rest. I must have been very deconditioned by then, but after that extra 3 weeks complete rest, I recovered, and within weeks was going on long hikes and fully fit.

27 years ago, when my ME started after a stomach bug when I was probably the fittest I'd ever been, I immediately had problems with standing for more than a few minutes. My weakness, muscle pain and PEM had nothing to do with deconditioning. I pushed through, kept working etc. All the wrong ways to treat ME, and gradually deteriorated, so I'm now housebound and mostly bed bound.

 

[Jonathan Edwards]

I think the difference between CBT and GET is in what the therapists say to patients.

The CBT therapists were specifically trained to 'help' patients overcome their 'false illness beliefs' that were making them afraid to exercise - thus encouraging them to believe that it was OK to exercise, and to start doing so, but not to any fixed plan.

Whereas the GET therapists were trained not to challenge beliefs, but to help patients set weekly targets of increasing activity, eg by walking for a bit longer.

OK, but if the patient had false beliefs about not doing exercise then they would not have done any exercise in the GET arm. Moreover, if patients had false beliefs about not being able to do exercise they would not have enrolled in PACE anyway. So it seems we must be dealing with patients who did not have false beliefs but were merely encouraged to think more positively about exercise, which must have been true for both?

You are making me think like Marco. You cannot apply CBT to false beliefs that would exclude the patient from enrolling. Maybe.

 

[Marco]

You are making me think like Marco.

God forbid!

 

[adreno]

The net result is the same, patients were encouraged in both groups to exercise more.

Sounds like serious conflation of trial modalities.

 

[user9876]

Sound familiar? Isn't this what they call CBT? Or at least that sort of CBT that ME/CFS patients get. So the arms in PACE are really Standard care; pacing ; CBT; CBT plus GET. The last two showed no real difference in outcome so there is no reason to attribute any improvement to exercise therapy.

I like your point. Although in PACE the exercise therapy made a very small improvement in peoples ability to walk a distance in 6 mins (or given dropouts may have made a difference).

But really they both set up common expectations about the treatments where as the other arms set lesser expectations which suggests bias.

OMG not the pale blue cardigans? Surely you need a dark blue one for exercise therapy. Sorry, stick to the point.

But that is amazing - so exercise therapy was given by psychotherapists? Who of course could not possibly know what CBT is or let it flavour their approach?

That seems pretty serious. CBT is pretty much defined as what a psychotherapist does in this context since we have no real idea what goes on. The pale blue cardigan is the closest we have to a chemical formula. At least I thought the therapy would come from girls with big quads and ... sorry, I am in a slightly mischievous mood.

Of course in GETSET they delivered care via leaflets, phonecalls and the internet so maybe there is a psychic element in detecting the colour of the cardigan. But then perhaps just having a picture of a blue cardigan on the leaflet is sufficient. Maybe the experiment should be how much you can dilute the blue cardigan and get an effect. If you mix blue wool with other colours will it still work, if you expose a red cardigan to a blue one will it retain sufficient memory of the blue one to help people? I can feel a new alternative medical approach of homeopathic cardigans being promoted.

 

[user9876]

If I recall correctly, in the PACE published outcomes, on certain if not most measures, the GET arm performed a little better than the CBT arm which suggests to me no reason to attribute much improvement to CBT (which in all honesty was the preferred therapy of the BPS crowd otherwise they'd just hand us over to physios and in that respect must have come as a bit of a disappointment).

On the other hand CBT is cognitive behavioural therapy where the cognitive is 'false illness beliefs' and the behaviour to be re-established is activity/exercise. The two arms are actually an integral part of the 'therapy'.

I believe they were separated to demonstrate that GET wasn't harmful and for no other reason. Wessely was correct in calling PACE a 'thing of beauty'. It was designed to flatter the preferred therapies and to debunk (a Wessely speciality) the only remaining objections of harm and an alternative (pacing).

I thought the results were pretty similar. I had wondered if part of the spinning was to ensure the results were similar and maintain the balance between QMUL and Kings as they each promote different arms. Otherwise we could have had arguments between the PIs and that would have lead to the dirt being exposed.

 

[thijs]

With all the anecdotes being posted, I will add mine as well then.
During a better period I was able to exercise regularly and eventually I managed to participate in an endurance sport event. Although fatigue was a bit less during this period, other symptoms remained the same. (Despite an objectively normal/good condition.) Looking back at it I think it was a waste of energy and I definitely wouldn't recommend it. But at least I can use it as an argument whenever someone 'accuses' me of fear of activity...

That being said, I don't think disproving the PACE (deconditioning) hypothesis will change much. The dutch BPS'ers abandoned the hypothesis some years ago (they already seemed to have doubts in 2001), but they created a new hypothesis without changing the treatment (much).

 

[trishrhymes]

OK, but if the patient had false beliefs about not doing exercise then they would not have done any exercise in the GET arm. Moreover, if patients had false beliefs about not being able to do exercise they would not have enrolled in PACE anyway. So it seems we must be dealing with patients who did not have false beliefs but were merely encouraged to think more positively about exercise, which must have been true for both?

You are making me think like Marco. You cannot apply CBT to false beliefs that would exclude the patient from enrolling. Maybe.

I'm not in any way defending the artificial division between the CBT and GET arms in terms of beliefs. I agree it's all nonsense. However, I'm not sure you're right about patients not enrolling if they had false beliefs about not being able to exercise. (Or as we would agree, actually correct beliefs, but the PACE people wrongly call them false beliefs).

I suspect they sold the treatments as effective and safe, without any mention of false beliefs, and reassured patients that any exercise involved would be well within safe limits. The patients in PACE were well enough to make regular visits to the clinic, so were presumably able to do a bit of gentle walking - as shown in the 6 minute walk test. Many probably had no particular beliefs about their illness, simply wanted help to get better, and trusted the therapists to help.

.....................

One of my biggest concerns about the type of CBT used here is not only that therapists are aiming to change people's beliefs about the perpetuating factor of their illness (wrongly). But that patients are not told that this is what the therapy involves in advance, so they can't give informed consent.

I doubt the recruitment process involved saying to patients:

' You probably think your illness has an ongoing physical cause and that exercise is harmful. We are going to put you through a brainwashing process to try to persuade you that you are wrong, that your illness is caused by your false beliefs and that exercise is good for you. What is more we are going to tell you to ignore the fact that exercise makes you feel worse. Oh and by the way, surveys of patients show that exercise treatments harm ME patients, making some of them much sicker for years'.

If they said that honestly to patients at the start in order to obtain fully informed consent, I doubt anyone would have enrolled.

Not saying something honest like this to patients is seriously unethical.