Webcast
Persistent (Medically Unexplained) Physical Symptoms:
A Scientist Practitioner Approach
Monday 8th June 10.00 – 15.30
Trudie Chalder, King’s College London and
David McCormack, Queen’s University Belfast
Today was Trudie Chalder’s webinar about MUS. I stayed the course and asked several few questions. Some were answered – not all.
My question re post exertional malaise and exercise intolerance got ignored. My ACT question was answered (see below). My critical question regarding the use of cross-sectional, self-report data to generate cause and effect theory was ignored. Trudie did try and answer my question about if there was any objective evidence re boom/bust patterns of behaviour– and did CBT for MUS change this pattern? She has just published a paper about this. She stated that patient self-reported activity does not correlate with actigraphy. We know that from before – one reason why objective measures are needed. She fails to see that - as her work is based on self-report – so it’s built on an inaccurate base…... She dismissed this as a reason to ignore the objective and go with what her patients say!
Overall, it was a superficial view of MUS and I think that frustrated quite a few who took part.
My thoughts in brief (and not in any specific order):
- Misdiagnosis of MUS patients was minimised to being ‘quite small’ which I don’t agree with and doesn’t agree with the published literature: e.g. Nimnuan et al 2000 (co-authored and supervised by Simon Wessely) For example, Table 4: For cardiology, the MUS misdiagnosis rate was 31.7%; for neurology it was 21.1% and for gastroenterology it was 18.2%. This is misdiagnosis on a large scale. The lack of safety here is staggering. This size of risk I suspect is not known. The MUS literature does not quote this paper. It is notably absent in MUS literature. Perhaps approaching this subject causes some fear and cognitive dissonance……
- While today was not specifically about IAPT – However, as patients can self-refer from to IAPT – missing out GP and other NHS departments - there was only a passing comment about how important it is for IAPT to ‘liase’ with GP and other NHS professionals – but that assumes there are other professionals involved in MUS patients care. That cannot be assumed. There frequently is not. Two papers have highlighted the 40% or so misdiagnosis rate in pwCFS into secondary care from GPs (Devasahayam, et al 2012 – co-authored by Peter White; Newton et al., 2010). Trudie suggested telling patients if they have new symptoms to wait 2 weeks and if still there to go to their GP. That’s it.
- The CBT model – e.g. the autopoietic model of how symptoms are maintained and perpetuated is not openly shared with patients – this part of the process is opaque. There is no ‘socialisation to the model’ part of the process – therefore it is hard to follow how a patient can give their informed consent for what will occur later on during the therapy.
- Complete absence of pain science, biomedical information on any of the MUS conditions. All symptoms are confidently not due to biomed reasons. Staggering in the arrogance. I think she takes literally her medical colleagues at face value here
- there is no critical analysis or thought that goes into this. It is so, because her colleagues tell her it is so.
- MUS=SSD=BDD and so forth. This violates the ICD codes whereby conditions cannot be listed twice. E.g. ME/CFS is listed under neurology – since 1969 – in Trudie’s eyes this is under BDD in ICD11 and SSD in DSM-5. No mention that DSM-5 rejected MUS. No objective criterion for identifying what an MUS is. Trudie thinks SSD is a huge move in the right direction – no critical analysis of any issues with this.
- The CBT for MUS is positioned as transdiagnostic model - even though there is huge variability between conditions coming under the inclusive MUS umbrella. pwME, for example, are exercise and activity intolerant as measured using objective VO2Max tests. Unable to redo this test 2-days in a row. That’s been repeated several times by independent groups. And this is not due to physical deconditioning. This doesn’t occur in other conditions like heart failure, nor in I suspect IBS. pwFMS have increased pain is they overdo things but they can tolerate a lot more activity on the whole that pwME/CFS. All need differing ways of working specific to the disease/condition.
- “it doesn’t matter what the diagnosis is.” She was confident about this.
- She understands pain in chronic pain and MUS is an amplification of previous traumatic experiences. (This can’t explain pwME or chronic pain without a history of trauma – as many do not have a trauma history like she describes). And she conflates previous trauma with current. Pure Freud. She minimises the traumatic effects of developing a debilitating condition that is poorly understood - that is also often being psychologised or trivialised. That in itself is traumatic and for some an assault on their sense of self.
- Stated pain does not ever equal harm including in inflammatory diseases such as autoimmune conditions, Bechet’s disease and so forth. I think that is highly misleading.
- CBT for MUS does not target distress, anxiety or depression (A&D). It targets symptoms; no wait it doesn’t target symptoms: it targets ‘processes’. Targets ‘behaviours’. These are rather opaque but are largely based on behavioural activation/GET – no objective measures to check if this is what patients actually do. Pacing was not mentioned at all. One warning about short term flare up of symptoms – no mention about the well-known, possible long term danger of harm from GET in pwME/CFS, for example. PwME have been bed-bound for decades following trying to do minimal amounts of exercise – no caution about this – totally absent. Not on her radar. A&D are assumed to be part of the condition (MUS) too but the model doesn’t target this. Seems circular to me.
- PPP part of the CBT model of MUS - lots of common life events (childhood illness, resting too much, boom/bust, avoidance, taking on too much, overuse of medications, misappraisal of symptoms etc) conflated into a possible formulation to explain the MUS – but no member checks to see if this has face validity at all.
- Evidence base was claimed with no critical review or presentation of what RCT/meta analyses demonstrate this evidence – it was glossed over. Evidence base with references to be sent through later…..
- Perfectionism was conflated with conscientiousness. Baffling.
- Patients symptoms are maintained partly by symptom focusing and behavioural avoidance. Distraction and mindfulness can sort that out apparently.
- She states that MUS’s ANS symptoms are classical conditioning responses to trauma – so should be undone by tfCBT, if true?
- She defines recovery in terms of patients making concrete changes (no matter how minor) – not symptom free or return to previous health. No discussion as to whether these concrete changes made a real world difference to patients’ lives? They feel better – and she believes them. Happy to take patients word for it. Whether they can go to work, make dinner, stand up or walk anywhere is not on her radar. She doesn’t see the relevance of objective, real world measures at all.
- Patients with MUS are frustrated and stressed rather than anxious and depressed. I agree. She then helps them with small, achievable goals and assumes that by building on this patients will be fine with it and recover. I see no evidence that this assumption hold true for pw chronic pain, ME and IBS etc. I think it can be helpful to support people while they learn to cope. The two are quite different. It’s misleading to present one as the other – substitution.
- Frequent use of patients symptoms are ‘real’ but it is clear to me as I’ve read her CBT for MUS model that she doesn’t believe they are biologically real – which is what patients think. It’s like double-speak.
- She thinks it is of no use to get into a debate about symptom causation. “goes horribly wrong”. So she encourages avoidance of this topic (rather ironic). Must cause a lot of incongruency in sessions and duplicity to the point of dishonesty.
- Trudie clearly and frequent mixes up patients ‘feeling better’ with ‘being better’ Patients want the later. She is happy with the former. This is Kahneman’s substitution in action.
- No objective evidence of improvement or recovery presented.
- Lots of talk about behavioural activation and how the patient is conditioned to their symptoms. So, if that were true CBT to work on increasing activity along with working on gentle dares would recover / vastly improve the patients predicament - but they don’t – the evidence does not suggest this happens – but she wishes it to be true. When I asked about this I didn’t get a reply.
- Trudie thinks that ACT (acceptance and commitment therapy) is equivalent to CBT for MUS. I think they are opposites. ACT helps people to accept and live well with things that they cannot change – part of NHS pain management programmes
– focus is on patients living well (low A&D, increased self-efficacy/competence/knowledge) despite having, for example, ongoing chronic pain. CBT for MUS suggests that patients have the power within themselves to make changes and recover by undoing classical and operant conditioning which are maintaining symptoms.
- When she explained the CBT approach in more detail it was similar to ACT. She mixes up what she is doing and achieving. She thinks she is helping patients to overcome their symptoms but what she probably doing is helping them to cope – (or upset them, if they get frustrated with her).
- At one point she shared “we don’t know what the cause is” but that contradicts her CBT model. Her model states symptoms are self-generated from within via the autopoietic process (Deary et al., 2007).
- Trudie states that resistance to therapy is common across psychotherapy. So, it’s no surprise to her that her patients with MUS are ‘resistant’. I personally don’t find pwPanic or PTSD or any other psychological condition to be ‘resistant’ – and when I encounter ambivalence, lack of knowledge etc I make sure the CBT model and, for example, the neuroscience of trauma; psycho-education re panic/FFF response is well explained and understood before I proceed. As the CBT model is opaque and not shared it is no wonder patients are resistant. This does not set off alarm bells for her – but it does me.
- Bias towards the uncritical literature. No mention of, for example Jones and de Williams (2019): No benefit from reduced healthcare usage via CBT for MUS.
- Trudie shared a cross sectional, self-report study as evidence the psychological trauma can result in MUS. Impossible to conclude cause and effect this from this type of study. Undergrad level error. Prospective studies dispute early trauma link with FM and chronic pain, for example. No discussion or critical analysis.
- The HPA axis and low cortisol was mentioned and some superficial evidence that CBT can normalise this. But it’s a bit of a leap that she makes to this as causal in the development of MUS and perpetuation of symptoms.
- She made some good points about sharing feelings of shame in an emphatic and supportive relationship. The beneficial effects of sharing traumatic experiences and the therapeutic and beneficial effects that this can have; but she conflates this with ‘being better’ when it helps someone to ‘feel better’ psychologically. She over reaches with the evidence – She is well meaning here – but she oversteps. I think this is seductive to others unfamiliar with the conditions. It can be accepted with a lot of psychological ease as it is what the clinician and the patient want. But unless it can be objectively and independently shown to be true – it remains speculative and tentative model at best.
- Trudie stated that CBT can be helpful for dissociative seizures as per the CODES trial just published (see attached). The primary outcome in that trial was reduced seizure frequency – was not significant. (Goldstein et al 2020). Shocker of a paper and the commentary by Perez (Harvard neurologist) is a good example of bias in action “In my opinion, CBT remains an effective treatment for dissociative seizures.” Even when faced with a negative trial outcome….. Beggars belief. I wrote a letter to the Editor of Lancet Psychiatry about the bias in Perez’s commentary – it’s been rejected as there is no room for debate currently due to Covid-19! I'll ask Mike Scott to share on CBT Watch. I've shared elsewhere on here.
So in summary, Trudie believes what she wants to believe and gives not one hoot about science or that she is barking up very big tree
But she does genuinely think she's doing a fine job........
I'm off out for a wee walk.
Bw
Joan Crawford
Counselling Psychologist
