Trial By Error: A Post About Lupus and MUS, Not COVID

By David Tuller, DrPH

This is another non-coronavirus post–my second in two days.

Before we were interrupted, I had been looking more into so-called “medically unexplained symptoms,” or MUS. A recently published study with data on the length of time needed to obtain a diagnosis of systemic lupus erythematosus, commonly known as lupus, has highlighted some of the core problems with the MUS construct. I mentioned this study in my Zoom appearance last month with the Sheffield ME & Fibromyalgia Group.

The study is called “Medically explained symptoms: A mixed methods study of diagnostic, symptom and support experiences of patients with lupus and related systemic autoimmune diseases.” It was published on February 26th by the journal Rheumatology Advances in Practice. The corresponding author, Melanie Sloan, is a research associate in the Department of Public Health and Primary Care at Cambridge University.

“Systemic lupus erythematosus (SLE) is a chronic, inflammatory, autoimmune disease which can be life threatening,” write the authors. “With no definitive diagnostic tests for SLE and related diseases, and a diversity of often non-specific presenting symptoms1, patients are largely reliant upon expert medical opinion for a diagnosis, with delays in diagnosis and subsequent treatment commonly reported.”

Sloan and her co-investigators analyzed data from 233 respondents to an online questionnaire about the experiences of lupus patients. From the start of symptoms, the mean time to obtaining a lupus diagnosis was a month short of seven years. Three out of four reported at least one misdiagnosis along the way for symptoms that were ultimately found to relate to their autoimmune rheumatic disease. According to the study, “mental health/non-organic misdiagnoses constituted 47% of reported misdiagnoses and were indicated to have reduced trust in physicians and to have changed future healthcare-seeking behaviour.”

The study’s findings are in line with some earlier research. For example, a 2014 survey of more than 2500 members of LUPUS UK found that the mean time to diagnosis from initial symptom awareness was 6.4 years. Almost half reported having been initially diagnosed with something else—16% with “chronic fatigue” and 11% with a “chronic psychological disorder.”

In the case of both studies, it would be possible to challenge the numbers as non-representatives, since responses to surveys are subject to various forms of bias. But the exact number of misdiagnoses is not the only point of interest. What the studies document is that, whatever the total, there are many such cases.

With lupus, the available research indicates that many patients receive one or more apparently mistaken diagnoses in the years prior to receiving a lupus diagnosis. The research also indicates that a significant minority of those who receive these misdiagnoses are categorized as having a psychological disorder or a non-organic disorder or “chronic fatigue,” which in this context is likely to be treated as a psychological and/or non-organic disorder.

What would be the treatment for the patients thus misdiagnosed? Certainly they would likely they would be referred to psychotherapy to treat the symptoms arising from their still-undiagnosed lupus. In England, these unfortunate patients might have been shunted off to the National Health Service’s metastasizing Improving Access to Psychological Therapies program. The program was launched in 2008 with the stated goal of targeting people with depression and anxiety disorders. It has since expanded to include patients with long-term conditions, such as cancer and diabetes, as well as MUS. For IAPT purposes, MUS patients are categorized as having CFS, IBS or unspecified MUS.

In recent years, members of the MUS ideological brigades have been hosting seminars and trainings for primary care physicians and other frontline health care providers. The goal of these events is to educate clinicians on how to diagnose MUS and counter patients’ requests for purportedly unnecessary medical tests. In England, these MUS experts have also promoted the need to divert such patients directly into IAPT, rather than sending them to specialist care.

I assume there might be a cohort of patients who were sent to IAPT for symptoms identified as MUS that were later properly and accurately attributed to lupus. It would be interesting to hear from any of them.

 

 

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  • CT 9 April 2020, 2:42 am

    Some members of those ‘MUS ideological brigades’ have marketed MUS to clinicians in the knowledge that misdiagnosis rates have been high in practice ( with one study finding that 40% of rheumatology patients initially considered to have ‘MUS’ had been misdiagnosed ), but they appear to have deliberately withheld that information from clinicians. This surely goes against the GMC’s ethical guidance to doctors that they have a duty to disclose information to protect patients and the public -https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/confidentiality/disclosures-for-the-protection-of-patients-and-others ?

  • Lady Shambles 9 April 2020, 5:24 am

    This MUS misdiagnosis issue appears to be key to exposing the underhand and morally bereft approach that BPS and MUS proponents have followed. Why not abandon all those (supposedly) costly patients with unexplained symptoms, in the same way as those ‘experts’ advising the UK government seemed prepared to abandon hundreds of thousands of people with their ‘herd immunity’ approach to Covid-19?

    I know you have promised us some very MUS-specific blogs David. I’m aware of a great deal of the intrigues and sleights of hand that those promulgating the ‘MUS’ construct have been involved in. In lock down, and with outside agencies unlikely to respond to any requests for information etc wrt other investigations, perhaps ‘now’ would be the time to start producing the blogs that render readers both ‘gobsmacked’ and worried? But knowledge is power, and knowing how to avoid the pitfalls that the UK health practitioners have placed in our way (a series of pitfalls happily exported to most other parts of the western world I understand) preserves us in a very real fashion from iatrogenic harm. Isn’t it strange that health practitioners and health policy decision makers should produce a Crystal Maze that sick people have to outwit in order not to be cast aside to BPS dogma which results in no benefits to anyone at all other than those producing such nonsense and governments for whom its useful in a pecuniary sense? But to return to where I started: maybe it isn’t so strange when ‘herd immunity’ was the primary ‘go to’ strategy when coronavirus hit the UK?

  • Lady Shambles 9 April 2020, 6:02 am

    “I know you have promised us some very MUS-specific blogs David” apologies..that might have been an overstatement borne of wishful thinking 😉

  • Scott Simpson 9 April 2020, 8:03 am

    MUS embeds medical error into health care systems. It is a large contributor to iatrogenic harm and medical error being 3rd leading cause of death.

    MUS is the intersection of snake oil (psych therapy for physical symptom) and gaslighting (you’re imagining your physical symptoms).

    In Canada, the biggest province gave $60 million to the Medical Psychiatric Alliance: “…the Alliance is dedicated to transforming the delivery of mental health services for patients who suffer from physical and psychiatric illness or medically unexplained symptoms.”

  • CT 9 April 2020, 8:57 am

    Indeed. If ME sufferers outside the UK think that they’re beyond the reach of the MUS construct then they’re seriously mistaken.