This post is about rebalancing the BioPsychoSocial approach to ME. This is a tricky and controversial topic so please bear with me.
With the flurry of discussion around the name change of CFS to SEID (Systemic Exertion Intolerance Disease) there has also been a revisiting of long running concerns and arguments in the ME/SEID community. I have seen the word ‘biopsychosocial’ cropping up more frequently. This word causes me stress in itself because it brings up a number of different, conflicting ideas in my mind.
The biopsychosocial model of pathophysiology, applicable to all disease, suggests that once an illness has started its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process(3).
Generally, within the ME community, biopsychosocial is a bad word, a swear word. It is associated with very bad, wash-your-mouth-out terms like GET and CBT. At best we think these strategies are dismissive and at worse we fear they will threaten our recovery.
I have two niggling concerns about the ME community’s rejection of everything biopsychosocial. The first is that we will miss approaches that could improve our quality of life through being stubborn on this issue (I have written in a previous Guest Post about my journey rethinking stress on MEcuperate). Secondly, we can appear to have lost the plot to anyone who hasn’t lived our history. The strength of emotional reaction we convey to the world about CBT, GET, biopsychosocial and certain researchers can come across as bizarre. Although knowing the context it is quite explainable, it is still unlikely to build the case that we are sane, reasonable people beset by a strange biological disease that needs lots of research please. Systematic evidence of faulty research design, dodgie stats on the other hand may eventually get there.
Overturn the BioPsychoSocial Model?
Of course we can choose to reject the BioPsychoSocial Model and come up with a new one we approve of to campaign for (perhaps equally as complex but without the baggage). However, having learnt about this model outside of an ME context I am aware that it is very pervasive (and fairly reasonable in other contexts). It is a much bigger task to overturn this way of thinking than it is to reinterpret ME treatment so that it fits with BPS but in a more satisfactory way. BUT perhaps a ME people’s movement could help birth a completely different outlook on health? Stranger things have happened…
I am suggesting that we need to find a more appropriate, balanced expression of the BioPsychoSocial Model for ME.
Put the Bio Back
Research into ME has often been sidelined into the psychosocial side of this model at the expense of the biomedical. This is an extremely emotive issue for people who have experienced catastrophic life changes from this disease especially as it is already comparatively under researched.
“if ME/CFS elicited the same level of scientific interest as multiple sclerosis, there would have been around 30,000 to 40,000 MEDLINE-listed articles in the past decade instead of the 2,500 in actuality.” www.meresearch.org.uk/information/publications/what-do-patients-want
For various obscure reasons in the history of our condition, I think that biopsychosocial theory has been misused, partly by missing the ‘bio’ bit out and concentrating on the psychosocial in a way in which it isn’t applied elsewhere. For example, CBT can be useful for some people with chronic illness as a way to respond to the demands of their illlness, or as a treatment for mental health difficulties, but it shouldn’t be seen as the main treatment for a physical health condition.
I am a psychology graduate and I studied mostly Health Psychology in my final year (1998-9 I didn’t know I had ME at the time). Lots of other diseases were touched on as examples of how the biological, psychological and social all interact with each other to create health/illness. Biopsychosocial stops looking so controversial if we look at ME as
a condition like many other medical conditions where illness results from a specific pathological defect in physiological functioning, mediated at organ, tissue, cellular and/or molecular level, by as yet undefined mechanisms. It… implies that a primary disease entity exists and that the biopsychosocial aspects are consequential(3).
An example is that lots of people seem to have got brown envelopes with DWP (benefit assessment) on them this week. Everyone probably had at least a moment of panic seeing it on the door mat (Society level effecting psychological level). This probably affected pre-existing physical symptoms in a small way that day (psychological level impacting biological level). Most people opened the envelope and it said they were getting a 90p increase for the next financial year or similar, they wondered if it was worth the mail out and forgot about it. Some people were told they were being reassessed for PIP. This starts a process of months of anxiety about how their health will be judged and having to monitor what they are able to do to fill in the form. The system makes them think about what they can no longer do, instead of hopeful thinking about ‘when I am well I will…’. By the day of the assessment their physical health is likely to be worse due to the physiological effects of chronic psychological stress (such as reduced immunity, increased heart rate etc). Whether or not they continue to receive benefits they will probably take weeks to recover from the ordeal. If they then have to go through an appeal process then they are more likely to meet the required criteria by the time of the appeal… It would be wrong to conclude that this illness is itself anxiety though, as their health condition was pre-existing and they wouldn’t have been so anxious about the assessment if they were well enough to work in the event of being turned down for benefits.
Adopting a biopsychosocial approach does not need to lead to CBT and GET
“As Carruthers et al have pointed out in their superb review (5),The question arises whether a formal CBT or GET program adds anything to what is available in the ordinary medical setting. A well informed physician empowers the patient by respecting their experiences, counsels the patients in coping strategies, and helps them achieve optimal exercise and activity levels within their limits in a commonsense, non-ideological manner, which is not tied to deadlines or other hidden agenda.
Psychosocial ‘burdens’ effect cancer patients, and nobody is trying to convince them that CBT is a treatment for a malignant growth, but apparently yoga can improve their quality of life and reduce depressive symptoms.
In my opinion we should start to assume the status of a recognised physiological disease and become more open-minded about alternative approaches to easing the psychological and social pressures we experience as a consequence of ME/SEID.
ME Friendly BioPsychoSocial Approach
Some ideas on how to ease our burdens:
Bio – medication for specific symptoms (increase deep sleep, pain relief etc), tried and tested herbal remedies, change in diet (varied vegetables, reduce gluten and so on), heart rate monitoring, pacing activity
Psycho – meditation, watching comedy, write a blog, creative activity, counselling
Social – funded research towards effective treatment (eg Jose Montoya said this week that $100 million in funding, and multi-disciplinary teams, can help us defeat ME in our lifetime), support and acceptance from society about demands of the disease, reasonable adjustments to return to work (eg flexible hours, working from home) or support to claim appropriate benefits
Combine and mix!
What about SEID?
I’m vaguely positive, but not excited, about this SEID thing. It is a definite improvement from CFS in terms of negative stereotypes. It seems to be a bit more useful in terms of diagnosis
“In a biomedical world which prizes homogeneous groups of patients — those with a confirmed diagnosis, sharing similar signs and symptoms and fulfilling strict criteria (such as males aged 30 to 50 with confirmed HIV infection and a white blood cell count less than 400 CD4/mm3) — the diagnostic mess that is ME/CFS is a real complication.
… In fact, ME/CFS biomedical research really is a fertile field for new discovery, and a fresh exciting challenge — and this has to be conveyed to and recognised by the wider scientific community.”
If SEID enables better quality, replicable research then it will be worthwhile.