“Medically Unexplained Symptoms” – A response to accusations of ‘gaslighting’

It’s been upsetting this week to have been accused on Twitter of “gaslighting” children and families.

I’m keen to clarify my position on Medically Unexplained Symptoms (MUS), an area in which I have clinical interest.

A thread follows.

1. Everyone is familiar with the idea that life stressors can cause physical signs/symptoms (for example, we feel nauseous when nervous, our heart races when we are scared, we cry when we are sad, we might even collapse when in shock…). These are normal daily physiological responses.
2. “MUS” is a rather outdated term. This field encompasses persistent physical symptoms for which there is no clear ‘biological’ cause (according to current medical understanding).
3. Some years ago I wrote some guidelines on MUS, intended to help doctors, in particular paediatricians and GPs, to navigate this field, which is poorly taught in medical training.
4. MUS are extremely common. There are a wide range of symptoms encompassed here, from persistent pain, functional weakness, non-epileptic attacks. Essentially any aspect of the body that can have a “functional” problem. Any clinician working with children, or adults for that matter, will be aware of these presentations.
5. The majority of such symptoms are actually time-limited and will pass. Watchful waiting can be entirely appropriate.
6. Some of the children with MUS – perhaps 4% – will go on to be diagnosed with physical pathology (where infection, inflammation etc are the causative factors).
7. Therefore, all children must have full holistic assessments, including thorough investigation of biological causes. Some but not all will need blood tests, brain imagining, even Lumbar Punctures or EEGs.
8. Also essential is an understanding of the psychosocial situation (school, home, peer relations). Is the child under particular stress? For example, exam pressures, parental separation, bullying.
9. We also need to assess the influence of parental anxiety. It is normal to feel anxious when your child has distressing symptoms. Sometimes however the anxiety can be a perpetuating factor.
10. Many children with persistent physical symptoms have sensory hypersensitivities, and consideration needs to be made for neurodevelopmental disorders such as Autism, which can be contributory factors. The concept of Interoception is little understood, but key.
11. I have never met a child I have considered to be fabricating (making up) symptoms. Symptoms like pain are very real and distressing for all.
12. It is very rare that a parent/carer will actively induce illness in a child, but it DOES happen and doctors need to be alert to this. RCPCH now favours the term “Perplexing Symptoms” as a framework to consider possible safeguarding issues. They have excellent clinical guidelines on investigating and managing these scenarios. Fabricated Induced Illness / Munchausens by Proxy are uncommon conclusions and tend to be overreported in the literature.
13. It is never the case that a child with MUS “simply” needs psychological therapy. In fact, few do. They need a sophisticated discussion with a paediatrician who understands the body/mind connection. Time is needed to understand the health beliefs and what will work best to help the child function best and enjoy life.
14. The majority of children and young people do not need referrals to CAMHS (which is a specific service set up to treat mental illness). Some children’s physical symptoms will cause persistent low mood or anxiety. It is important to offer treatment if these meet clinical significance, whether or not they are secondary, rather than primary phenomena.
15. CAMHS services are under huge strain. It is in no-one’s interest to attempt to categorise problems as being ‘psychiatric’ when they patently are not. I am not seeking additional work!
16. Turning to specific diagnoses, there are MANY biological conditions which can present with an array of physical symptoms, from mild to severe in nature. These include, but are not limited to: Hypermobility Syndromes, PANS/PANDAS, POTS, CFS/ME, Lyme Disease, LongCOVID. All of these disorders must be considered carefully as differential diagnoses.
17. There are consensus guidelines for the management of these conditions. Doctors must work to these or their practice can be called into question. Guidelines will evolve as we understand more about these illnesses. Patient groups are right to demand more trials and studies where we have a lack of evidence.
18. There are undoubtedly additional medical disorders which we currently have insufficient understanding of, and will come to light in the future.
19. Additional tests must be entered into with caution. Over-investigation happens and can be a cause of iatrogenic harm. Some children will go on to develop a belief that there is something wrong with the substance of their body.
20. I am not an expert in paediatrics. So I rely on paediatricians to tell me when physical investigations have come to an end. This is usually the point that I become involved, as a liaison psychiatrist.
21. I have treated many young people with MUS. Many recover swiftly with a sensitive approach which considers body and mind, simultaneously.
22. Many other terms used to describe MUS are clumsy – eg “Psychosomatic” which tends to be interpreted to mean that a psychological problem is the cause of the difficulty. My presence in the consulting room is not equivalent to my paediatric colleague thinking that symptoms are “in the child’s head” (whatever that might be thought to mean).
23. Even now, medical schools teach in a Descartian, dichotomous fashion which separates body and mind. We need better, more accepted language to describe these complexities, and we need a new societal dialogue.
24. We also need more research, which involves young people and carers at every stage. We need to work collaboratively.