I’ve never read so much about a piece of clinical research as I have about the PACE trial. The storm – and that’s the right word because it IS a storm – of responses from across the globe and on social media has been simply breathtaking. WOW!
Because that’s happened I feel connected in with the CFSME community in a way that couldn’t have happened before social media was invented or before the tipping point against the PACE trial that is taking place in many communities, the media included.
I feel a bit responsible too. Yeah, I do. Why? Well because this blog is public, I write it knowing that it can be read by just about anyone, and some of the things I’ve said have been perhaps for some people a bit close to the bone. Hmmmm.
That’s not the reason why I disappeared after writing the last post, by the way, that was because the crappy internet at my silver surfer Dad’s house broke. It’s back up again now. That pause though has given me time to reflect.
I felt I wasn’t being as responsible as I could be about adding to the debate around the PACE trial….also I missed out post 86. There’s brain fog for ya!
I reflected on why I am so sure about the PACE trial being a piece of bad research
To give an answer I thought I’d write again about my experience of being a patient in an NHS CFSME clinic. I thought I’d also explain something about myself to make my opinion clearer.
I’m not only an ex-NHS clinical manager with all that entails but I’m also an ex-therapist
That was a long time ago now and I haven’t practiced for years. There are lots and lots of different types of counselling and therapy – each different type are called ‘models.’ The model of therapy I practiced was psychodynamic.
In a nutshell it means that I used to work with clients both in groups and in 1-1 sessions, talking with them about their lives and helping them to make links between current issues and past issues to bring them towards a more stable life or happy resolution to issues they were experiencing.
Yes, I was employed to do this within the NHS and yes, I’ve worked alongside lots of different professional groups, different types of therapists too – ones that practice CBT included. Because I have been a therapist, the counselling that I do currently with Crystal is not the first time I’ve been in counselling or therapy.
Most people working with people’s minds are expected to have extensive understanding of their own mental processes before even getting to the point of working with other people’s, so I’ve got a certain amount of what people call insight i.e. I know myself and my own issues fairly well.
Boy, has becoming disabled with CFSME created some new ones though! 😉
I should add again that I haven’t practiced for years and years – and that’s decision I’m comfortable with, but having left it in the past as I did, I found myself thinking about it all over again once I started to attend an NHS CFSME clinic.
Because right from the first moment I walked in through the door, I recognised that the staff were using psychological techniques immediately. It was as obvious as a chef smelling ingredients in a dish being cooked in a kitchen.
I’ve said what I’ve said because I want to be clear that my reaction to the PACE trial or CBT isn’t because I am averse or suspicious of psychological medicine. I’m not. Neither am I against CBT. It can be an extremely effective model of therapy.
But I’m not uninformed or inexperienced either. You see alongside the therapy qualification, I also have a post-graduate qualification in Psychology, with my particular interest in Health Psychology – that was my dissertation subject.
Part of the reason why the research underpinning CBT is so wide ranging, is that CBT uses a system by which symptoms or problems are scored on a regular basis, thereby providing a ready-made scale from which to evidence how well the technique is working.
Most other therapeutic or counselling techniques don’t utilize this sort of tool automatically within the sessions. I didn’t while I was practicing, I judged efficacy from the subjective feedback from the client, whether they were feeling better, whether any symptoms were improving and whether they felt ready or confident to stop therapy.
No forms, no tick boxes like CBT to measure that though.
When I walked in through the door of the CFSME clinic for the first time I recognised that they were using CBT even in the introductory conversations.
The next thing I started to wonder was why on earth it was being used.
It was obvious to me as – a health care professional, that is – that I was ill. Really, really, ill.
The illness I had meant I presented to my GP and the clinicians at the MECFS Clinic with a multitude of symptoms, both physical and psychological, that were pervasive and profoundly disabling.
I’ve never once doubted that this illness is real and of biological origin and should be treated with the respect it deserves.
So why were they using CBT?
What? No treatment programme?
I couldn’t understand that when I discussed these symptoms with the various clinicians working at the clinic, they were using obvious psychological techniques that changed or challenged what I was saying.
Here’s an example:
Me: I’ve got a real problem with talking for too long. My throat gets really sore, really quickly…
Psychologist: How long can you talk for?
Me: (thinking this is a question that is leading to a physical assessment of my symptoms) ..about 10 or 15 minutes and then my throat gets sorer and sorer…
Psychologist: So you can talk well for a maximum of 15 minutes?
Me: (thinking, ‘this is taking about 5 minutes, I’ve got about another 10 before these symptoms become all-too-clear again’) Well…yes. Yes, but I can’t talk for much longer than that…
Psychologist: Talking for 15 minutes is OK then. What you could do is have a rest before starting to talk again.
Me: Er. Right….(thinking: ‘hold on, that’s not a very realistic approach’) Um look. Sorry for being blunt but I feel that’s really not very realistic advice, how can I go through life stopping in the middle of every conversation after 15 minutes.
Psychologist: You feel that’s not realistic advice. Why isn’t it realistic advice?
And so on….
Here’s another example from when I did Graded Exercise Therapy. This treatment was carried out by a Physiotherapist.
Me: I have to stop you there, I’ve got an injury.
Physiotherapist: Yes, we usually find that something happens at this stage of Graded Exercise Therapy.
Me: ( I am lying flat out on my sofa, one leg extended and unable to move without spikes of pain in my leg) So I’ve had to stop exercising.
Physiotherapist: Why would having an injury stop you exercising?
Me: I’m on crutches.
Now for some people, interactions like this would be entirely appropriate. I’m not saying that CBT doesn’t work, what I’m saying is that it didn’t for me.
After many more interactions and a lot of inner work, reflecting on whether their approach was right, whether I had a bias because of my professional training, or whether I was a patient now and had to do what I was told, I surfaced from this inner work to face up to the fact that they had alienated me and damaged my sense of trust in the practitioners and model of treatment that was being carried out there.
I faced up to the fact that my experience of having MECFS wasn’t being directly acknowledged in these interactions.
Note how in the examples I’ve given of each interaction, the other person wasn’t acknowledging what I said about my experience.
They made me feel that being therapeutic at the level of an individual’s own, subjective experience of having ME wasn’t, in fact, the clinical, caring, therapeutic focus within the clinic. It wasn’t about making you feel better unless you did that by a process of CBT.
I came away feeling that the clinical focus in the clinic was to shift so-called, labelled ‘negative thinking patterns’ that they assessed me as having about my illness. Every symptom and conversation about the symptom became a focus of CBT from the practitioner side. No wonder it felt so counter-therapeutic to me.
“I can’t talk for longer than 15 minutes without my throat becoming sore,” became, in their eyes: “I can’t talk longer than 15 minutes without my throat becoming sore – so I think and feel the glass is half empty.”
They seemed to be treating me using CBT techniques whether I’d said the glass was half empty or not.
Actually the emotional glass wasn’t half empty at all…
Because I’d always accepted that CFSME was a real illness of biological origin and needed to be treated with the respect it deserved, I was very even tempered about it and what I was experiencing.
From the off I saw it as illness progression and symptomology, not maladaptive thought patterns.
What did I want instead?
I wanted to know what their expert opinion was.
I wanted to hear something like:
Me: “I can’t talk for longer than 15 minutes without my throat becoming sore.”
Them: “Yes. That’s a common symptom of CFSME, a lot of our patients mention it. We aren’t certain yet of why that happens. Some biological evidence indicates that people get CFSME after a serious infection. In your case it was having flu and getting a chest infection during it.
“People like you with CFSME are called post-infectious onset patients. There’s work being done to sub-group different types of people with the illness, to make treatment and research more effective, but we aren’t there yet, sorry.
“There’s research that shows that what happens is that your immune system doesn’t switch off and that’s perhaps why your throat is inflamed.
“We can’t be certain about this but the key at this stage of your illness is to rest. You must rest your voice as much as you rest your body. That in the early stages can make the difference between a positive prognosis and a more conservative prognosis.
“I want to reassure you that we in this team believe your illness is biological. We believe that the research will catch up with this soon. We will help you and we are here to listen to you. If you need us to talk to your GP we will.
“Rest. You need to rest. We’ll sign you off sick from work if needs be. We’ll be here for you throughout. “
That conversation has never happened. Not once. It’s what I’d do of course, but I’m not a practicing clinician any longer.
Like many people with CFSME, I’ve picked up that advice from doing my own research and reading the advice given from the charities.
So…what’s your point about the PACE trial.
You can see that I’m already making many points about the psycho-social model of treatment here in the UK. But here’s the point that I’m making in this post that is specific to the PACE trial.
If you adopt Cognitive Behavioural Therapeutic techniques and they are successful, some CFSME patients will come out the other end having changed their attitude towards, amongst other things but not limited to, their fatigue.
If your mind and body is telling you: “Go to bed, you feel ill and sleepy,” or “you can’t walk more than 10 minutes because if you do, you’ll feel far worse the next day and that’s bad,” and you are challenged on those thoughts, you will end up thinking more positively.
If you as a patient have been trained to challenge those thoughts and stay awake, on the CBT symptom reporting scale you WILL show improvement. It’s inevitable. What it shows is that the CBT is working effectively.
Here’s another example of how I was told to change the way I thought about my illness, in my experience of Graded Exercise Therapy:
“If you increase your exercise you are bound to feel some adverse effects until you get used to it. Those adverse effects can be problematic but not long standing, so start small and work upwards…”
The result was that I did end up feeling differently and doing more exercise than I did before I started. Still felt crap though!
Oh I can’t say I feel crap, I have to challenge that. I feel good because I did some exercise! There you go – improvement.
Research evidence of this sort of change doesn’t mean that your underlying disease process is better or recovered though! It simply doesn’t.
The other problem with the PACE trial…
That sort of attitudinal adjustment can, in itself, bring about a positive change in a patient’s subjective reporting of their symptoms only without any sort of real change in their functioning.
At the beginning of undertaking the treatment your scores will reflect how you feel before the CBT intervention. This will include your scores on, for instance, the Chalder fatigue scale.
However, because of the way CBT works if it is effective throughout, at the end and afterwards, your before-CBT thoughts and behaviours will change. That’s the point of CBT. It STILL doesn’t mean that your underlying disease process is better or recovered, though!
How it might work filling out a form in a research study like one that could have been used in the PACE trial..
You’ve completed CBT/GET. CBT has taught or trained you to observe and think about your thoughts differently. You’ve had a lot of practice in this. You are then filling out a form that measures your fatigue 10 months after your CBT/GET has ended.
The form gives you a question. The question might be: “My fatigue is worse, the same, or better than it was 10 months ago.”
You look at this question. The thought you immediately have is: “I’m not certain that this has worked at all. I still feel really, really tired and exhausted after I exercise.”
CBT and GET will have challenged that type of thought. Your ‘training’ will identify it as a negative or maladaptive thought. Your training will also have ‘trained’ you to change that thought to a different one that is not negative or maladaptive.
This training kicks in as you observe yourself thinking that thought while you look at the question on the form.
Although your first thought was: “I’m not certain that this has worked at all. I still feel really, really tired and exhausted after I exercise.”
You now see this as negative and maladaptive. You have done a bit more exercise than you did 10 months before. That’s the part of your experience you focus on therefore you tick the box on the form that says: “My fatigue is better than it was 10 months ago.”
Bingo. In this way the style of thought patterns addressed by CBT and GET can produce a falsely positive result.
A huge limitation of undertaking this sort of research study is that by telling people to think differently, you are already weighing the odds towards an outcome that shows positive change. Again! All that sort of research can conclude or suggest is that a change of attitude has taken place which has changed behaviour.
Because no-one is aware of what the biological processes are behind CFS or ME, a study like the PACE trial isn’t being carried out against a backdrop of biological screenings that would evidence if the disease process is changing at the same time.
In the future the two could work in tandem. In that way the biological will inform the psychological and visa versa. In a trial such at that, if a person is being trained through CBT to think differently and do more and the biology shows that the diagnostic markers remain the same, improves or declines throughout the study, THAT is a more representative example of research about a symptomatic improvement for some people with CFS or ME.
The hospitals where the PACE team work have biological screening available, they have MRI scanners available, they have bio-chemical and bio-psychological research teams.
The problem that I have with the PACE trial is that it took the easy option. With the right biological research working in tandem with a more robust psychological research tool, it could have been so good, so much better.
And it wasn’t.
© Lindy 2015