A general thread on the PACE trial!

Yes, it's obvious after the fact with dissecting the trial into it's various bits. But when actually engaged in the trial with a focus on doing well and no extra energy or expertise to pay attention to other motivations or reasonings it is an easy possibility.

 

Matthees had compiled comments from PACE trial participants for his tribunal case, so the comment could be in there (although many more have been posted since then): https://b1ad200d-a-62cb3a1a-s-sites...YogFcDJTYw0zS1k9uouL9S_OCFQSo=&attredirects=2

 

Yes, that's where the quote that @Barry and I quoted originally came from (posts #364 and #397).

 

We have to remember we are not typical patients, analysing everything said to us. If the specialist tells you that doing a walk every day is going to make you well, that is what you do. I know at one point I would have rested all morning to have the walk in the afternoon not understanding the thinking behind it was that I was not active enough.

It is the natural consequence of having a theory but not caring if it is accurate or not.

 

The whole document is very well worth a read (or re-read), but the following are some of the things that stand out for me. All bolding mine.

 

I personally think that gradually increasing exercise in the expectation of improved health or recovery should be called GET rather than pacing, even if it is symptom rather than time contingent. It's still an inappropriate and harmful advise, even though less risky than the time contingent version.

I suppose I take a minority position on this because people like Goudsmit and Vink have suggested the Wallman RCT is a form of pacing rather than GET.

 

My view is simple:

If the aim is increase, then it is GET.
If the aim is stabilisation, then it is pacing.

This distinction does not prevent natural fluctuations in activity levels.

So, the pacing folk could still have a fortuitous period of increase. However that increase would not be the aim of the pacing itself. Sure it might be an outcome of doing less damage along the way, by staying inside the energy envelope, but it is not a given that any increase will happen, nor is it a goal to work towards.

Pacing acknowledges the physical limits of the patient and does not aim to change those limits. No sneaking activity up, no matter how slowly, is advised. No patient blaming when “increase” doesn’t happen. No claiming a successful “treatment” or “cure” if/when fortuitous improvement actually occurs.

GET on the other hand is based on the aim of increasing. Set-backs are seen as temporary hiccups along a path towards “increase” and “improvement”. It is goal orientated.

Yet, GET has become more cautious I think. Now there is more careful emphasis on “establishing a baseline”, and then making the incremental increases tiny ones. These increases may at first look like success. In fact all that is happening is that the ME sufferer is creeping closer and closer to their absolute exertion threshold. When the relapse finally happens, the “Boom and Bust” scenario is envoked to blame the patient. (Obviously there will be some event where the patient can be told they “overdid” things leading to the relapse. They didn’t follow the plan closely enough, will be the explanation!)

The two are thus distinct in my view, no matter what the latest spin on GET becomes.

However, we do have a problem. NICE still recommend GET, so therapists delivering Pacing advice, may still call it GET, in order to demonstrate adherence to NICE. So there are many patients out there thinking they have done GET, when in fact they haven’t. These folk will say GET helped! This doesn’t help at all.

Edited to correct “autocorrect” errors!

 

Yes!

 

This is interesting. I think I remember Charles Shepherd saying something similar: that some cfs centres claim to use GET for the record, but actually apply something more akin to pacing.

 

I spoke to a lady recently, who said she felt awkward talking on patient groups about how much GET had helped her, because she realised other patients disliked it so much.

She said GET helped her a lot! We talked some more, and it turned out the advice was really Pacing.

There were a couple of “goals” involved, but the solutions were all about re-prioritising other areas of her life to leave enough energy to achieve the “goals” that meant something to her. That included getting others to take on some of the household things she was doing. This is sensible pacing advice in my view.

 

Sounds like there is a re-branding exercise underway so GET becomes acceptable? Or might it be that decent therapists realise the foolhardiness of GET, yet have to operate under its banner, so adapt it to something that is actually caring and effective. i.e. Pacing.

Probably both I suspect.

 

That would be fine provided that there is an express acknowledgement of the alteration, and admission as to the reasons for the change.

 

So people who move towards a form of pacing with the aim of feeling better and being able to do more are really doing GET?

I think that the definitions are difficult here.

To me, an important distinction is between a therapist led approach, where it's assumed that someone paid to manage patients has valuable insights into how patients should respond to their illness, and a patient driven approach which recognises that almost no-one knows what they're talking about with 'ME/CFS' and that patients are often better off finding their own way to respond to their specific circumstances.

 

We really need to be able to track down PACE participants and get a reliable picture of what truly happened. We get these bits and pieces that seem to confirm the overall picture but the PACE team's concerns with being able to identify participants from the data, ludicrous on its face but whatever, probably stems exactly from this concern, that so far the participants have kept silence about what happened but their testimony would ultimately be damning.

A full independent analysis from investigators who have access to all the data and all the participants is badly needed. There is so much dirt still to be uncovered and we've barely scratched the surface of how wrong this trial was. No doubt this is why they spend so much effort defending access, but it's just a matter of time.

 

I think there is a difference between what all patients would love to happen (and even aspire to), and the prescriptive intention to push for “increase”. Which I think is what you are saying in your last paragraph @Esther12

If a better balancing of exertion leads to fewer symptoms, and that in turn leads to some improvement in abilities, I see that as good fortune.

Pacing therapists are not pushing for “increase” as an outcome measure (are they?), nor is “increase” the goal. In my view ther should be an explicit acknowledgment that Pacing may not in fact alter the underlying disease process. However good pacing can (assuming no other uncontrollable factors) lead to stabilisation, or at very least a slowing of progressive symptoms.

 

One of the PACE participants I interviewed made this exact point--he increased his walking but did less of his other activities--he substituted or compensated one for the other. So he looked perhaps like a possible "success" but actually wasn't doing more overall.

 

I think funding is an issue too. As NICE currently recommends CBT and GET, then that is what CCGs will pay for.
There was a very informed neurophysio at the NICE engagement workshop in Jan.

Their clinic provides home visits/letters and help with other coping strategies etc. They are not "doing PACE-style CBT and GET", but are able to provide a helpful service.

If GET and CBT are removed from Guidelines and not replaced with recommendations about Pacing or ?, then these services will no longer be funded. We will all just be left with IAPT!!

(I am not pro PACE-style GET/CBT, or any other BPS approach to ME)

It is such a shame that we ended up with a Bath physio and not the above one on the GDL Committee.