PACE style CBT for CFS/ME - should it be scrapped?

[Woolie]

I thought I was pacing but in actual fact once we really looked at it I was still doing boom and bust.

That makes it sound like you were doing something inappropriate. Of course you weren't, its extremely difficult to get that balance exactly right. Better to say "I was still not managing my activity optimally".

 

[Sly Saint]

The brainwashing sort becomes redundant if GET is banned though doesn’t it?

Only if this CFS PACE version of CBT is shown for what it really is, and removed as a 'treatment' for ME/CFS.

(What actual treatment or help for ME/CFS patients is subsequently decided upon is another matter but I agree with what @Trish said on the issue).

 

[arewenearlythereyet]

Only if this CFS PACE version of CBT is shown for what it really is, and removed as a 'treatment' for ME/CFS.

(What actual treatment or help for ME/CFS patients subsequently decided upon is another matter but I agree with what @Trish said on the issue).

Yes I can see in some cases that GET by the back door could occur via brainwashing CBT. If GET were dismissed though it would make it more difficult for them to promote exercise.

I think taking on CBT directly could end up complicated because of the way it is being integrated into many other illnesses...it kind of gives a platform for us to be criticised for attacking people with mental health problems. It’s not impossible but it’s a muddier message than the GET one. Perhaps we should say that CBT should be for those who need it ...like cancer etc. And make it truly optional. As I understand it there is no prescribed course just woolly one to one sessions integrated with a GET plan at present.

Perhaps the remove GET campaign should also demand that it is replaced with heart rate pacing which would more directly contradict the exercise CBT? We should also demand that all literature and communication carries a health warning for carrying out exercise?

 

[adambeyoncelowe]

I had the unhelpful kind of CBT when I first got ill. It made me worse.

Then two years later I had the supportive kind of CBT from an NHS therapist who knew a lot about pacing. This type was really good and helped me feel more stable. But it wasn't a treatment, just good management. My illness level didn't improve I just learnt how to avoid the crashes and manage it all better. The therapist wasn't working from a deconditioning model and I think that was key. We were simply responding to symptoms and gradually working out what I could and couldn't do and what level of activity made me crash/kept me the most stable.

I would think it would be a shame to lose the chance for others to get this type of supportive CBT but I agree it's quite a tricky to explain the distinction between types of CBT.

My second therapist wasn't an ME/CFS specialist, but she was used to working with people with long-term post chemo fatigue and other chronic illnesses. Pacing is helpful in managing many conditions. I don't think that ME needs it's own specific kind of CBT model - we should be able to access the kind of support that is offered to anyone who is learning to live with chronic illness (although does that even exist any more??).

But this isn't really CBT. It's pacing.

Part of the problem of CBT is that it means everything to everyone. It was very clear on both tables I sat on at NICE that people in clinics use CBT mean a variety of different things, but usually 'activity management'.

Asking for continued CBT of any kind leaves us open to this kind of variation in interpretation. Instead, we need pacing only, and call it that.

Of course, everything would be better if there were a standardised, codified kind of pacing that every clinic used. That way we'd have consistency. But that means we need proper and consistent teaching of clinicians.

In my work for Schools OUT UK (the charity behind LGBT History Month in the UK), we send people into schools, police stations and various local authority and private organisations to teach people the key equality issues, not only around LGBT people but all protected strands under the Equalities Act. That's one way of making sure that people are potentially singing from the same hymnsheet. Similar things were done after the Stephen Lawrence murder to ensure that organisations were thinking more openly about how they might contribute to institutional racism. Now many organisations do have equalities training.

What might be useful in ME, is for an organisation with sufficient scientific and political clout to offer such specialist training in a structured and standardised way. This could be a centre for excellence or something else, but if we can parachute experts into training courses around the country, we'd be in a better position than if we're just relying on outdated textbooks written by the very people who've buggered up this area of medicine.

This is all stuff that's far off in the future, and a bit of a tangent, but I'm just aware that the problem is very much systemic.

 

[Peter]

It is one of a kind that in context of PACE, CBT should solve the disease. This special kind of CBT to address unhelpful thoughts (fear of activity) as cause, is insane. It should be scrapped. Then no one would oppose the usual supportive CBT as offered for many conditions for mere management. To be offered that, especially early on, could be of use for some for coping purposes. But that is something completely different, not the insane idea that ME-patients are ill because “thinking wrong”. I may not be up to date on where PACE stands today on this, modifying, twisting and fitting in, but this is what has been sold in for years and come across. But most ME-patients do exactly the opposite of exploratory model of PACE, they do have coping skills from here to heaven. Coping is so to speak just about the only thing ME-patients are good at. There should be no doubt that the CBT PACE-style can and often will cause substantial harm. The link between this and GET seen as a solution for deconditioning as cause, is equally insane.

 

[Sly Saint]

I think taking on CBT directly could end up complicated because of the way it is being integrated into many other illnesses...

That's not what I'm saying.

Maybe a better way to put it is:

If CBT is to be offered to ME/CFS patients, it should not be the version as used in the PACE trial with deconditioning as its model. It should be a version based on current evidence and patient experience.


(I've only looked at PACE; anyone have any documentation on what the CBT in MAGENTA, SMILE and currently FITNET was/ is?)

 

[Tia]

I totally agree that no CBT is better than PACE CBT.

We know that PACE CBT is DANGEROUS.

In my experience, support to learn how to pace or what I've been calling 'supportive CBT' is helpful (but is not a "treatment").

In my ideal world people would be diagnosed quickly and then get a little bit of this kind of support to pace/ 'supportive CBT'.

I've been torn about the issue of how we frame this because of all the confusion around different types of CBT and what it means but I think @adambeyoncelowe has just hit the nail on the head for me:

But this isn't really CBT. It's pacing.

You're absolutely right (don't know how I didn't see this before) what I've been calling 'supportive CBT' isn't actually CBT is it? It was called CBT when I had it ... or at least it was delivered by a CBT therapist but actually it was completely different to the actual CBT I'd had before. Pacing doesn't involve challenging your cognition it just involves learning techniques to manage your illness. If we call it 'pacing' and don't mention CBT at all doesn't this solve the problem?

Part of the problem of CBT is that it means everything to everyone. It was very clear on both tables I sat on at NICE that people in clinics use CBT mean a variety of different things, but usually 'activity management'.

@adambeyoncelowe when you say 'activity management' do you mean pacing as opposed to GET based CBT?

What might be useful in ME, is for an organisation with sufficient scientific and political clout to offer such specialist training in a structured and standardised way. This could be a centre for excellence or something else, but if we can parachute experts into training courses around the country, we'd be in a better position than if we're just relying on outdated textbooks written by the very people who've buggered up this area of medicine.

This would be great.

Just as an aside... one thing that I find so confusing when trying to explain this whole situation to friends is the fact that the PACE trial is called pace which sounds like pacing, so annoying isn't it?

 

[Tia]

Here's my take on this:

Physiotherapists are trained to help people to stay mobile and be able to exercise more.
Occupational therapists are trained to rehabilitate people and help them become more active.
Psychotherapists/CBT therapists (both supportive and directive) are trained to help people think and behave differently which includes exercising more because it's 'healthy behaviour'.

I don't want any of those 3 professions involved in helping pwME learn about pacing. It goes against everything they have trained to do.

Nurses are trained to look after sick people and help them with whatever treatment a doctor has recommended. Some nurses are trained as specialist nurse practitioners focused on a single condition (diabetes, asthma, Parkinsons' disease etc). The are trained and work under the supervision of consultant doctors in the relevant specialism.

It seems to me that a properly trained specialist nurse would be the best person to help people learn to pace and to monitor them with regular follow up visits in between consultant visits. They can also advise on medications for symptomatic treatment.

Totally agree. This is a really good point, and makes so much sense. I hadn't really thought of it but course you are right. I guess establishing a centre of excellence would be the starting point for developing this sort of model.

Are there specialist MS nurses I wonder?

 

[Milo]

Here is my opinion: the core of what medical care should focus on is the biology: understanding what is happening in the body, addressing the most disturbing symptoms and tryin to modify the course of the disease.

The medical bodies should be relieved of doing education for the patients and leave this task to patient associations. Moreover, patient associations should be invited to audit physicians educating their peers to ensure the proper information is passed on, according to the relevant science. Their job should then be to advance science, to diagnose, rule out other diseases, to investigate abnormalities, to assist patients with their disability paperwork, and last but not least, to treat patients. Currently there is not enough of this happening.

 

[adambeyoncelowe]

I totally agree that no CBT is better than PACE CBT.

We know that PACE CBT is DANGEROUS.

In my experience, support to learn how to pace or what I've been calling 'supportive CBT' is helpful (but is not a "treatment").

In my ideal world people would be diagnosed quickly and then get a little bit of this kind of support to pace/ 'supportive CBT'.

I've been torn about the issue of how we frame this because of all the confusion around different types of CBT and what it means but I think @adambeyoncelowe has just hit the nail on the head for me:




You're absolutely right (don't know how I didn't see this before) what I've been calling 'supportive CBT' isn't actually CBT is it? It was called CBT when I had it ... or at least it was delivered by a CBT therapist but actually it was completely different to the actual CBT I'd had before. Pacing doesn't involve challenging your cognition it just involves learning techniques to manage your illness. If we call it 'pacing' and don't mention CBT at all doesn't this solve the problem?



@adambeyoncelowe when you say 'activity management' do you mean pacing as opposed to GET based CBT?



This would be great.

Just as an aside... one thing that I find so confusing when trying to explain this whole situation to friends is the fact that the PACE trial is called pace which sounds like pacing, so annoying isn't it?

So when I say 'activity management', I'm intentionally meaning both pacing and GET, because that's what the clinics do. The clinics intentionally use fluid terms. So sometimes the CBT is pacing advice, sometimes it's about embedding the sort of activity management principles that underline GET.

What every clinic should be doing, is offering pacing advice instead and calling it pacing. That excludes GET-called-pacing or CBT-called-pacing, or pacing-called-CBT or GET-called-activity-management. Call a spade a spade, not a scooping soil implement or earth rehabilitation tool.

 

[Hutan]

Call a spade a spade, not a scooping soil implement or earth rehabilitation tool.

Yes, and while we are on that, I think we should not be seeing CBT listed as a treatment for ME on government and patient organisation websites. No, not even when they are meaning the 'good' supportive kind.

If they must have a word for helping someone cope with having a chronic illness through talking about it, the word is 'counselling'.

Maybe that counselling is supportive CBT, maybe it's holding hands and singing kumbayah after a chat, whatever works for the person. There is way too much of a risk of confusion if CBT is specified, given what CBT has so often been for people with ME (i.e. brainwashing).

 

[adambeyoncelowe]

Yes, and while we are on that, I think we should not be seeing CBT listed as a treatment for ME on government and patient organisation websites. No, not even when they are meaning the 'good' supportive kind.

If they must have a word for helping someone cope with having a chronic illness through talking about it, the word is 'counselling'.

Maybe that counselling is supportive CBT, maybe it's holding hands and singing kumbayah after a chat, whatever works for the person. There is way too much of a risk of confusion if CBT is specified, given what CBT has so often been for people with ME (i.e. brainwashing).

I agree. 'Supportive counselling' is far better than 'supportive CBT'. It also allows for flexibility. Though, I have to say, all my friends who've had such services on the NHS find it terrible. Charities seem to offer better, more targeted services anyway.

My friend with serious PTSD and substance abuse issues was treated like crap and blamed by his CBT practitioner, so now sees a Macmillan counsellor off the books. His grandmother died of cancer last year, so that was his 'in', but he's stayed with her for over a year because she thought he needed it for those other issues. Now he's doing well enough to come off citalopram and he's making positive changes to his life.

From what I can gather, things like befriending services, counselling and support groups seem to be better than CBT anyway. And a large part of that, I suspect, is the social element.

 

[NelliePledge]

Whatever happens anything that is going to call itself pacing actually has to start from the basis of the dictionary definition of pacing yourself https://www.merriam-webster.com/dictionary/pace oneself

To do something at a speed that is steady and that allows one to continue without becoming too tired

 

[Snow Leopard]

Yes it should be scrapped.

CBT can be useful for some people, as far as coping with chronic illness is concerned. But it is never useful when the focus is gaslighting e.g. denying that people have an underlying disease that can't be cured simply by changing thoughts and behaviour. (PACE style)