̽��ֱ�� of Cambridge - Lupus Trust

Chronic diseases misdiagnosed as psychosomatic can lead to long term damage

cjb250 — Mon, 03 Mar 2025 00:01:07 +0000

A study involving over 3,000 participants – both patients and clinicians – found that these misdiagnoses (sometimes termed “in your head” by patients) were often associated with long term impacts on patients’ physical health and wellbeing and damaged trust in healthcare services.

̽��ֱ��researchers are calling for greater awareness among clinicians of the symptoms of such diseases, which they recognise can be difficult to diagnose, and for more support for patients.

Autoimmune rheumatic diseases such as rheumatoid arthritis, lupus and vasculitis are chronic inflammatory disorders that affect the immune system and can damage organs and tissues throughout the body. They can be very difficult to diagnose as people report a wide range of different symptoms, many of which can be invisible, such as extreme fatigue and depression.

Dr Melanie Sloan from the ̽��ֱ�� of Cambridge led a study exploring patient-reported experiences from two large groups, each of over 1,500 patients, and in-depth interviews with 67 patients and 50 clinicians. ̽��ֱ��results are published today in Rheumatology.

Patients who reported that their autoimmune disease was misdiagnosed as psychosomatic or a mental health condition were more likely to experience higher levels of depression and anxiety, and lower mental wellbeing. For example, one patient with multiple autoimmune diseases said: “One doctor told me I was making myself feel pain and I still can’t forget those words. Telling me I’m doing it to myself has made me very anxious and depressed.”

More than 80% said it had damaged their self-worth and 72% of patients reported that the misdiagnosis still upset them, often even decades later. Misdiagnosed patients also reported lower levels of satisfaction with every aspect of medical care and were more likely to distrust doctors, downplay their symptoms, and avoid healthcare services. As one patient reported, it “has damaged my trust and courage in telling doctors very much. I even stopped taking my immunosuppressive medicine because of those words”.

Following these types of misdiagnoses, patients often then blamed themselves for their condition, as one individual described: “I don’t deserve help because this is a disease I’ve brought on myself. You go back to those initial diagnosis, you’ve always got their voices in your head, saying you’re doing this to yourself. You just can’t ever shake that. I’ve tried so hard.”

One patient described the traumatising response their doctor’s judgement had on them: “When a rheumatologist dismissed me I was already suicidal, this just threw me over the edge. Thankfully I am terrible at killing myself, it’s so much more challenging than you think. But the dreadful dismissiveness of doctors when you have a bizarre collection of symptoms is traumatizing and you start to believe them, that it’s all in your head.”

Dr Melanie Sloan, from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge, said: “Although many doctors were intending to be reassuring in suggesting a psychosomatic or psychiatric cause for initially unexplainable symptoms, these types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care. These appear to rarely be resolved even after the correct diagnoses. We must do better at helping these patients heal, and in educating clinicians to consider autoimmunity at an earlier stage.”

Clinicians highlighted how hard it was to diagnose autoimmune rheumatic diseases and that there was a high risk of misdiagnosis. Some doctors said they hadn’t really thought about the long-term problems for patients, but others talked about the problems in regaining trust, as one GP from England highlighted: “They lose trust in anything that anyone says…you are trying to convince them that something is OK, and they will say yes but a doctor before said that and was wrong.”

However, there was evidence that this trust can be rebuilt. One patient described having been “badly gaslit by a clinician”, but that when they told the clinician this, “She was shocked and had no idea … She was great. Took it on the chin. Listened and heard. Apologised profusely…For me, the scar of the original encounter was transformed into something much more positive.”

Mike Bosley, autoimmune patient and co-author on the study, said: “We need more clinicians to understand how a misdiagnosis of this sort can result in long-standing mental and emotional harm and in a disastrous loss of trust in doctors. Everyone needs to appreciate that autoimmune conditions can present in these unusual ways, that listening carefully to patients is key to avoiding the long-lasting harm that a mental health or psychosomatic misdiagnosis can cause.”

̽��ֱ��study authors recommend several measures for improving support for patients with autoimmune rheumatological diseases. These are likely to apply for many other groups of patients with chronic diseases that are often misunderstood and initially misdiagnosed.

They propose that clinicians should talk about previous misdiagnoses with patients, discuss and empathise with their patients as to the effects on them, and offer targeted support to reduce the long-term negative impacts. Health services should ensure greater access to psychologists and talking therapies for patients reporting previous misdiagnoses, which may reduce the long-term impact on wellbeing, healthcare behaviours, and patient-doctor relationships. Education may reduce misdiagnoses by encouraging clinicians to consider systemic autoimmunity when they assess patients with multiple, seemingly unconnected, physical and mental health symptoms.

Professor Felix Naughton, from the Lifespan Health Research Centre at the ̽��ֱ�� of East Anglia, said: “Diagnosing autoimmune rheumatic diseases can be challenging, but with better awareness among clinicians of how they present, we can hopefully reduce the risk of misdiagnoses. And while there will unfortunately inevitably still be patients whose condition is not correctly diagnosed, with the correct support in place, we may be able to lessen the impact on them.”

̽��ֱ��research was funded by LUPUS UK and ̽��ֱ��Lupus Trust.

Reference
Sloan, M, et al. “I still can’t forget those words”: mixed methods study of the persisting impacts of psychosomatic and psychiatric misdiagnoses. Rheumatology; 3 Mar 2025; DOI: 10.1093/rheumatology/keaf115

A ‘chasm of misunderstanding and miscommunication’ is often experienced between clinicians and patients, leading to autoimmune diseases such as lupus and vasculitis being wrongly diagnosed as psychiatric or psychosomatic conditions, with a profound and lasting impact on patients, researchers have found.

These types of misdiagnoses can create a multitude of negative feelings and impacts on lives, self-worth and care

Mel Sloan

Annie Spratt

A person laying in a bed under a blanket

̽��ֱ��text in this work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. Images, including our videos, are Copyright © ̽��ֱ�� of Cambridge and licensors/contributors as identified. All rights reserved. We make our image and video content available in a number of ways – on our main website under its Terms and conditions, and on a range of channels including social media that permit your use and sharing of our content under their respective Terms.

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“I feel like I’m Alice in Wonderland”: nightmares and ‘daymares’ could be early warning signs of autoimmune disease

cjb250 — Mon, 20 May 2024 22:30:24 +0000

̽��ֱ��researchers argue that there needs to be greater recognition that these types of mental health and neurological symptoms can act as an early warning sign that an individual is approaching a ‘flare’, where their disease worsens for a period.

In a study published today in eClinicalMedicine, researchers surveyed 676 people living with lupus and 400 clinicians, as well as carrying out detailed interviews with 69 people living with systemic autoimmune rheumatic diseases (including lupus) and 50 clinicians. Lupus is an autoimmune inflammatory disease known for its effect on many organs including the brain.

In the study, the team also asked patients about the timing of 29 neurological and mental health symptoms (such as depression, hallucinations and loss of balance). In interviews, patients were also asked if they could list the order that symptoms usually occurred when their disease was flaring.

One of the more common symptoms reported was disrupted dream sleep, experienced by three in five patients, a third of whom reported this symptom appearing over a year before onset of lupus disease.

Just under one in four patients reported hallucinations, though for 85% of these the symptom did not appear until around the onset of disease or later. When the researchers interviewed the patients, however, they found that three in five lupus patients and one in three with other rheumatology-related conditions reported increasingly disrupted dreaming sleep – usually vivid and distressing nightmares – just before their hallucinations. These nightmares were often vivid and distressing, involving being attacked, trapped, crushed, or falling.

One patient from Ireland described their nightmares as: “Horrific, like murders, like skin coming off people, horrific…I think it’s like when I’m overwhelmed which could be the lupus being bad…So I think the more stress my body is under then the more vivid and bad the dreaming would be.”

̽��ֱ��study interviewers found that using the term ‘daymares’ to talk about hallucinations often led to a ‘lightbulb’ moment for patients, and they felt that it was a less frightening and stigmatised word.

A patient from England said: “[When] you said that word daymare and as soon as you said that it just made sense, it’s like not necessarily scary, it’s just like you’ve had a dream and yet you’re sitting awake in the garden…I see different things, it’s like I come out of it and it’s like when you wake up and you can’t remember your dream and you’re there but you’re not there… it’s like feeling really disorientated, the nearest thing I can think of is that I feel like I’m Alice in Wonderland.”

Patients experiencing hallucinations were reluctant to share their experiences, and many specialists said they had never considered nightmares and hallucinations as being related to disease flares. Most said they would talk to their patients about nightmares and hallucinations in future, agreeing that recognising these early flare symptoms may provide an ‘early warning system’ enabling them to improve care and even reduce clinic times by averting flares at any earlier stage.

Lead author Dr Melanie Sloan from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge said: “It’s important that clinicians talk to their patients about these types of symptoms and spend time writing down each patient’s individual progression of symptoms. Patients often know which symptoms are a bad sign that their disease is about to flare, but both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realise that these can be a part of autoimmune diseases.”

Senior study author Professor David D’Cruz from Kings College London said: “For many years, I have discussed nightmares with my lupus patients and thought that there was a link with their disease activity. This research provides evidence of this, and we are strongly encouraging more doctors to ask about nightmares and other neuropsychiatric symptoms – thought to be unusual, but actually very common in systemic autoimmunity – to help us detect disease flares earlier.”

̽��ֱ��importance of recognising these symptoms was highlighted by reports that some patients had initially been misdiagnosed or even hospitalised with a psychotic episode and/or suicidal ideation, which was only later found to be the first sign of their autoimmune disease.

One patient from Scotland said: “At 18 I was diagnosed with borderline personality disorder, and then 6 months later with lupus at 19, so it’s all very close together and it was strange that when my [borderline personality disorder] got under control and my lupus got under control was within 6 months.”

A nurse from Scotland said: “I’ve seen them admitted for an episode of psychosis and the lupus isn’t screened for until someone says ‘oh I wonder if it might be lupus’...but it was several months and very difficult… especially with young women and it’s learning more that that is how lupus affects some people and it’s not anti-psychotic drugs they needed, it’s like a lot of steroids.”

Professor Guy Leschziner, a study author and neurologist at Guys’ and St Thomas’ hospital, and author of ̽��ֱ��Secret World of Sleep, said: "We have long been aware that alterations in dreaming may signify changes in physical, neurological and mental health, and can sometimes be early indicators of disease. However, this is the first evidence that nightmares may also help us monitor such a serious autoimmune condition like lupus, and is an important prompt to patients and clinicians alike that sleep symptoms may tell us about impending relapse."

̽��ֱ��research was funded by ̽��ֱ��Lupus Trust and is part of the INSPIRE project (Investigating Neuropsychiatric Symptom Prevalence and Impact in Rheumatology patient Experiences).

Reference
Sloan, M et al. Neuropsychiatric prodromes and symptom timings in relation to disease onset and/or flares in SLE: results from the mixed methods international INSPIRE study. eClinicalMedicine; 21 May 2024; DOI: 10.1016/j.eclinm.2024.102634

An increase in nightmares and hallucinations – or ‘daymares’ – could herald the onset of autoimmune diseases such as lupus, say an international team led by researchers at the ̽��ֱ�� of Cambridge and King’s College London.

Both patients and doctors can be reluctant to discuss mental health and neurological symptoms, particularly if they don’t realise that these can be a part of autoimmune diseases

Mel Sloan

David Wall (Getty Images)

A ghostly figure silhouetted between trees in a forest

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Clinicians rank patient views as least important in diagnosis, study finds

cjb250 — Mon, 18 Dec 2023 00:16:36 +0000

̽��ֱ��research, led by a team at the ̽��ֱ�� of Cambridge and Kings’ College London, found that clinicians ranked patient self-assessments as least important in diagnostic decisions, and said that patients both over- and under-played their symptoms more often than patients reported doing so.

One patient shared the common feeling of being disbelieved as “degrading and dehumanising” and added: “If I had continued to have regard for clinicians’ expertise over mine, I would be dead… When I enter a medical appointment and my body is being treated as if I don’t have any authority over it and what I’m feeling isn’t valid then that is a very unsafe environment… I’ll tell them my symptoms and they’ll tell me that symptom is wrong, or I can’t feel pain there, or in that way.”

In a study published today in Rheumatology, researchers used the example of neuropsychiatric lupus, an incurable autoimmune disease that is particularly challenging to diagnose, to examine the different value given by clinicians to 13 different types of evidence used in diagnoses. This included evidence such as brain scans, patient views, and the observations of family and friends.

Fewer than 4% of clinicians ranked patient’s self-assessments in the top three types of evidence. Clinicians ranked their own assessments highest, despite acknowledging that they often were not confident in diagnoses involving often invisible symptoms, such as headache, hallucinations, and depression. Such ‘neuropsychiatric’ symptoms can lead to low quality of life and earlier death and were reported to be more often misdiagnosed – and therefore not correctly treated – than visible ones such as rashes.

Lead author, Dr Melanie Sloan from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge, said: “It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms, particularly those with long-standing diseases – after all, they are the people that know what it is like to live with their condition. But we also need to make sure that clinicians have the time to fully explore each patient’s symptoms, something that is challenging within the constraints of current health systems.”

Almost half (46%) of the 676 patients reported never or rarely having been asked for their self-assessments of their disease, although others discussed very positive experiences. Some clinicians, particularly psychiatrists and nurses, valued patient opinions highly, as a psychiatrist from Wales explained: “Patients often arrive in clinic having had multiple assessments, having researched their own condition to a very high level and having worked hard to understand what is going on with their own body… they are often expert diagnosticians in their own right.”

Patients’ and clinicians’ personal characteristics such as ethnicity and gender were felt to sometimes influence diagnosis, particularly a perception that females are more likely to be told their symptoms are psychosomatic. ̽��ֱ��data showed that male clinicians were statistically more likely to state that patients over-played symptoms. Patients were more likely than clinicians to say that symptoms were directly caused by the disease.

̽��ֱ��study authors acknowledged that patient reasoning will be inaccurate at times, but concluded that there were likely to be many potential benefits (including diagnostic accuracy, fewer misdiagnoses, and greater patient satisfaction) to including patients’ “attributional insights” and experiences into decisions about diagnosis. This is particularly important when diagnostic tests in neuropsychiatric lupus are widely known to be “unenlightening”, according to one neurologist, in common with many other autoimmune diseases and long Covid.

Dr Tom Pollak, senior study author from the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said: “No human being is always going to be able to accurately pinpoint the cause of symptoms, and patients and clinicians can both get this wrong. But combining and valuing both views, especially when the diagnostic tests aren’t advanced enough to always detect these diseases, may reduce misdiagnoses and improve clinician and patient relationships, which in turn leads to more trust and more openness in symptom reporting.”

Sue Farrington, Co-Chair of the Rare Autoimmune Rheumatic Disease Alliance, said: “It’s time to move on from the paternalistic, and often dangerous, ‘doctor knows best’ to a more equal relationship where the patients with lived experiences and the doctors with learnt experiences work more collaboratively.”

̽��ֱ��research was funded by ̽��ֱ��Lupus Trust and LUPUS UK.

Reference
Sloan, M et al. Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study. Rheumatology; 18 Dec 2023; DOI: 10.1093/rheumatology/kead685

Experts today call for more value to be given to patients’ ‘lived experiences’ as a study of over 1,000 patients and clinicians found multiple examples of patient reports being under-valued.

It’s incredibly important that we listen to and value patients’ insights and their own interpretations of their symptoms – after all, they are the people that know what it is like to live with their condition

Melanie Sloan

Natalia Gdovskaia (Getty Images)

Doctor consulting with patient

̽��ֱ��text in this work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. Images, including our videos, are Copyright © ̽��ֱ�� of Cambridge and licensors/contributors as identified. All rights reserved. We make our image and video content available in a number of ways – as here, on our main website under its Terms and conditions, and on a range of channels including social media that permit your use and sharing of our content under their respective Terms.

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Experts call for urgent mental health support for people living with long term autoimmune diseases

cjb250 — Tue, 25 Jul 2023 23:01:46 +0000

In a study published today in Rheumatology, researchers found that over half of the patients had rarely or never reported their mental health symptoms to a clinician, and that the range of possible mental health and neurological symptoms is much wider than has been previously reported.

̽��ֱ��team surveyed neurological and psychiatric symptoms amongst 1,853 patients with systemic auto-immune rheumatic diseases (SARDs) such as lupus and rheumatoid arthritis. ̽��ֱ��researchers also surveyed 289 clinicians, mostly rheumatologists, psychiatrists and neurologists, and conducted 113 interviews with patients and clinicians.

̽��ֱ��30 symptoms that the team asked about included fatigue, hallucinations, anxiety and depression. Among the patients in the study, experience of most of these symptoms was very widespread.

55% of SARD patients were experiencing depression, 57% experiencing anxiety, 89% had experienced severe fatigue and 70% had experienced cognitive dysfunction, for example. ̽��ֱ��overall prevalence of symptoms was significantly higher than previously thought, and much higher than in a control group of healthy volunteers.

̽��ֱ��mental health symptoms described by patients contrasted strongly with clinician estimates. For example, three times as many lupus patients reported experiencing suicidal thoughts compared to the estimate by clinicians (47% versus 15%). Clinicians were often surprised and concerned by the frequency and wide range of symptoms that patients reported to the researchers.

Some clinicians were much more focused on joint symptoms over mental health symptoms as they held the opinion that SARDs do not commonly affect the brain.

However, other clinicians felt that these symptoms were under-estimated because patients were rarely asked about them in clinic. One rheumatology nurse interviewed said: “Doctors don’t go looking for it [hallucinations], so if we don’t ask we don’t think it exists much.”

̽��ֱ��study found disagreements between clinicians specialising in different aspects of care, but very few hospitals had effective systems where rheumatologists, neurologists and psychiatrists worked together.

Dr Tom Pollak from the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, said the study highlights the importance of all clinicians asking their patients about mental health: “We have known for some time that having a systemic autoimmune disease can negatively affect one’s mental health, but this study paints a startling picture of the breadth and impact of these symptoms. Everyone working in healthcare with these patients should routinely ask about mental wellbeing, and patients should be supported to speak up without fear of judgement. No patient should suffer in silence.”

̽��ֱ��study showed that patients were often reticent to report to clinicians mental health problems they might be having, sometimes feeling that they might be stigmatised. Patients frequently said that even when they did share their mental health symptoms with clinicians, they were often not commented on or not documented accurately or at all.

One patient expressed how this felt: “Feel guilty and useless as well as depressed and very unwell. I don’t really feel supported, understood, listened to, hopeful at all. It is awful living like this…. All just feels hopeless.”

Dr Melanie Sloan from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge said: “ ̽��ֱ��low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening. It’s only by fully engaging patients in their healthcare and by asking them for their views that we will be able to determine the extent of these often hidden symptoms, and help patients get the understanding, support and treatment they need.”

̽��ֱ��research team suggests that though they found neurological and psychiatric symptoms to be under-elicited in clinic, under-identified in research and under-represented in clinical guidelines, they described almost all clinicians as highly motivated to improve care. Rapidly evolving knowledge – including the behavioural and cognitive impacts of chronic inflammation and a widening range of potential biomarkers – means that there is grounds for optimism.

Sarah Campbell, Chief Executive of the British Society for Rheumatology, commented: "This study highlights the urgent need for improvements in the access patients have to integrated mental health support. Given what the study finds on the prevalence of this issue and the deep impact neurological and psychiatric symptoms have on patients, it should be of grave concern to policy makers that only 8% of rheumatology departments in England and Wales have a psychologist embedded in their team. We fully support the study team’s conclusion that more inter-disciplinary and patient-clinician collaboration is needed to ensure equity in the care of patients’ mental and physical health."

̽��ֱ��Rt Hon the Lord Blunkett said: "It’s both surprising and deeply concerning that almost half of lupus patients have experienced suicidal thoughts, and that clinicians greatly under-estimate the mental health burden of these chronic diseases. This highlights the importance of extra funding for the NHS and the holistic care that is urgently needed for these patients. I echo the British Society of Rheumatologists’ concerns about the poor current provision of mental health support. Now is the time for the Government to act to give them the support they desperately need."

̽��ֱ��research was funded by ̽��ֱ��Lupus Trust and LUPUS UK

Reference
Sloan, M et al. Prevalence and identification of neuropsychiatric symptoms in systemic autoimmune rheumatic diseases: an international mixed methods study. Rheumatology; 26 Jul 2023; DOI: 10.1093/rhe/kead369

More than half of patients with auto-immune conditions experience mental health conditions such as depression or anxiety, yet the majority are rarely or never asked in clinic about mental health symptoms, according to new research from the ̽��ֱ�� of Cambridge and King’s College London.

̽��ֱ��low level of reporting we identified is a major concern as problems with mental health, fatigue and cognition can be life-changing, and sometimes life-threatening

Melanie Sloan

K Mitch Hodge

Statue of a figure hugging its knees

̽��ֱ��text in this work is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. Images, including our videos, are Copyright © ̽��ֱ�� of Cambridge and licensors/contributors as identified. All rights reserved. We make our image and video content available in a number of ways – as here, on our main website under its Terms and conditions, and on a range of channels including social media that permit your use and sharing of our content under their respective Terms.

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