I’ve been promising a post about what’s called the “biopsychosocial model” being used to diagnose and “treat” ME/CFS, and this is it. It’s a ranty one, so strap yourself in.
For those of you who don’t know, the biopsychosocial model is a medical approach found mainly in psychology departments, that attributes disease symptoms to the interaction of biological factors (genetic, biochemical, etc), psychological factors (mood, personality, behavior, etc), and social factors (cultural, familial, socioeconomic, etc). Notable by its absence is often any constructive acknowledgment, at least in practise, of the pathological causes of those disease outcomes. This is because the primary users of this approach are psychologists, and those practitioners who work in CFS programmes focus strongly on the premise that disease symptoms manifest from psychological issues. And they are quite protective of their theory – perhaps to the point of having a detrimental affect on the patient. It’s not difficult to see that there is a place, albeit a relatively contained place, for this approach in tackling some conditions such as panic attacks related to trauma (as opposed to panic attacks related to a heart condition) for example. However IMHO the approach is being misused by psychologists who are not educating themselves in the wider medical advances into ME/CFS and have no interest to do so. Instead many are pushing their ideological and often inappropriate therapies onto patients to the detriment of their overall wellbeing, and in the place of targeted, physiological medical expertise. Although the biopsychosocial model has played a role in challenging psychiatric dogmatism in mental health, it has devolved into something not just self-indulgent, obstructive and dangerous, but has been termed “mere eclecticism” by some of its own peers. (*see link below)
The reason I’m writing about this now is because of a recently published article by Nancy Blake on the National Health Service (NHS) Managers website. I’ve posted a link to it at the bottom of the page. The article advises managers of NHS practices to quickly suspect ME/CFS when a patient first describes key symptoms; intervene with practical, preventative measures to ensure the patient cannot worsen during the long process of diagnosing by exclusion; and it warns against use of the current psychiatric models of intervention. It emphasises that the symptoms must be considered a medical emergency. It is my strong opinion that there can be no positive outcome for a patient who has self-indulgent eclectic concepts imposed on them by psychologists, in place of physiological assessment, trusting the patient’s knowledge about their own body, and the kind of preventative measures recommended by Blake such as rest and palliative care.
I had a home visit from the CFS Programme this week. I was visited by an Occupational Therapist (OT) and a Clinical Psychologist because like nearly all the NHS CFS programmes in the UK, my local one is run by a psychology team. That’s because, for reasons of a flawed trial called the PACE trial (more info below), therapies like Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) have become quite a money-spinner for psychology departments (aided by physiotherapists) in treating what this OT called “medically unexplained fatigue” (That phrase in itself is a misnomer because if my experience is like that of other patients, the liklihood of a detailed, thorough and systematic process of exclusion will have been a fantasy. And the reality is a few generalised blood tests and if you’re lucky a scan of some sort; abnormal results falling through the cracks of diagnosis; pot-luck whether you’re “diagnosed” by a rheumatologist, immunologist, neurologist, GP or shrink; and more loose ends than an explosion in a yarn factory). For “medically unexplained” please read “medically missed and baffling”.
They told me because my ME is severe that the local CFS programme won’t help me – which is fair enough and in many ways a relief. The National Institute for Health and Care Excellence (NICE) guidelines do state that the kind of therapies delivered by psychologists and physiotherapists are for mild to moderate cases only. But the OT pushed and pushed to persuade me to go onto the same sort of programme as an in-patient. When I asked for more details about what that programme involved she said it’s the same CBT and GET, but more intensive. That sounds worse than the normal programme! Because I couldn’t get any details out of them (which is a warning sign in itself about either the validity of the treatments or the OT’s knowledge of the programme she’s peddling) I put out a call to several ME groups online for people who had done an in-patient programme like that. The resulting opinions slated it. Most patients got worse as they were forced, however ill to get up, dine communally etc. Many described it as feeling like you’ve been sectioned (it’s also run by psychologists mainly, apparently). The nearest thing to a positive comment came from a man who said it was a waste of his time as he felt herded like cattle to do activities like communal crafts at a table. I got not one single positive comment! I decided that I am too ill to not be in control of my diet, not to be able to manage my exposure to light and noise and other triggers for my seizures and crashes; and so I decided that I will not be doing the in-patient programme. I had to tell the OT that three times and justify it in numerous ways before it sunk in.
If I’m honest, the clinical psychologist who came from the CFS programme actually made me feel very uncomfortable. I’d already told her my GP has referred me to a neurologist to get to the bottom of my seizures and left-side weakness, but she ignored that and she probed me for all the symptoms of my seizures. She was telling me how my breathing changes which I had to repeatedly challenge her about and say no – she was trying to put words in my mouth and wrongly describing my symptoms. And she wanted me to ask my boyfriend if she could interview him about my seizures. That smacks of someone who doesn’t respect my GP’s professional opinion and is acting beyond what her qualifications entitle her to do. She is not a neurologist. I’ve come to the conclusion that this type of intervention is actually quite dangerous and I will not be engaging with them further (nor signing my data rights over to them which they also want me to do).
The biopsychosocial model of treating ME, which is the ideology (I use that term intentionally) behind this kind of intervention by psychologists, is not helpful when used to actively dismiss any pathology behind specific symptoms. It moves from beyond unhelpful to downright inappropriate when that pathology is the professional opinion of a GP who has performed a neurological examination of the patient (me) but the psychologist hasn’t. And it’s extremely inappropriate when it’s also been used to dismiss a neurologist’s important role in diagnosing and treating neurological symptoms.
There’s a fine line between knowing there’s a place for psychology in medicine and using it as an obstructive tool. Sadly, as Blake implies, too many patients suffer because of that psychiatric intervention instead of a physiological medical approach. The emergency-action approach as a measure to prevent lasting damage is widely medically accepted when it comes to symptoms of a stroke for example. But medical attitudes to ME are antiquated by comparison. And much of the obstruction of the progression of medical attitudes to ME is due to the dogmatism of psychologists brandishing their biopsychosocial banner and mopping up NHS funding with it, which could be much better used on other diagnostic procedures and therapies. It is a banner which has been openly criticised by medical professionals and patients who feel bullied and harmed, and it’s been dismissed as of limited value by some of its users’ peers.
Psychologists need to know their place and back off when they’re actions impair proper medical diagnoses and treatments. My experience and the accounts of other ME sufferers with whom I’ve spoken, suggests to me that the psychologists are keeping themselves in work by aggrandising their role in a disease process that usually does not require their input. They are benefitting from funding to their programmes by recruiting ME patients onto inappropriate and sometimes damaging “therapies” without any accountability or consequences to the damage they do. My ME was of sudden onset after what my GP believes to have been viral meningitis which left me with ME, Fibromyalgia and suspected epilepsy. In what way does that pattern of causation look like a psychologist could prevent, diagnose or treat it? And in what way should a psychologist replace the expertise of a neurologist or other medical professional? Clearly there is no role for a shrink in diagnosing or controlling neurological symptoms and yet they want to impose their outdated and wrongly-targeted ideologies on this. Imagine if I’d said yes to the in-patient programme and trusted their non-medical opinions on seizures instead of going to see the neurologist? That is dangerous and could be very damaging to my health and, as an ME suffer operating at around 25% on the Functional Ability Scale (in other words I can do about one quarter of what I could before I developed the illness), there actions could potentially destroy what little quality of life I still have, if I were to let them intervene any further.
Clearly I won’t be. The next patient my not be so lucky and I strongly believe that people’s lives can be destroyed by these sorts of practises because, as Blake states, in psychological therapies there is no failure. Any lack of improvement or deterioration in the patient is seen as the patient’s fault. My experiences support this: from my local CFS Programme’s repeated evasion of my requests for statistics about how many patients worsen after Graded Exercise Therapy (they’re good at quoting that 65% of patients improve through GET, but have been unable to tell me what percentage of the remaining 35% actually worsened). And my experience of completing the same department’s Pain Management Programme also supports the hypothesis that there is no acknowledgement or measuring of failure in psychotherapy. By the programmes’s own assessment criteria my pain levels and coping mechanisms for pain deteriorated considerably in 30 out of 31 different measurement criteria between the start and the end of the programme – facts which were entirely absent from the narrative report.
I do always end my posts with a positive thought, and today’s is about trusting yourself. Don’t get pursuaded against your own better judgement to follow a course of therapy that you think may risk your health further – whatever your chronic illness may be. Do independent research, question motives and speak to patients who’ve been through it. The health system is not infallible, trust must be earned not given blindly, and there are egos to be managed, as in any walk of life. However, when what’s at stake is your health, it pays to be even more circumspect. You’re in control. Nobody else is.
Here as promised are some links relevant to the above post:
Please read the excellent article about treating ME as a medical emergency here:
For more information on the many issues with the PACE trial and why its promoted therapies are harming some patients, this is a good place to start reading:
* To learn more about the evolution of the biopsychosocial model, and an interesting critique of its role, follow this link:
For a great supportive forum in which to discuss experiences of therapies for ME (or anything else), I recommend joining Foggy Friends if you’re either a sufferer of the illness or a carer or family member of someone with the illness. You can find the forum here:
To assess your own symptoms against the Functional Ability Scale, please follow this link: