Although research has shown that people with ME/CFS have biological abnormalities that are associated with disease severity and symptoms, and most researchers consider ME/CFS as a biological disease, there is still a misconception amongst many people – worryingly, including health professionals – that the disease is psychological in nature (psychosomatic) rather than biological.
A recent article by a team of researchers in Germany and the USA – including Manuel Thoma, Leonard Jason and former ME Research UK-funded researcher Carmen Scheibenbogen – provides a clear summary of why the view that ME/CFS is a psychosomatic illness is inconsistent with results from biomedical research.
Not only this, but the article highlights that the continuing perception of ME/CFS being psychosomatic amongst health professionals, and those funding research, has impeded biomedical research and understanding of the disease, and led to potential harm to people with ME/CFS – including misdiagnosis, delays in diagnosis and treatment, and dismissal of symptoms (medical gaslighting).
What biological abnormalities have been identified in people with ME/CFS?
Thoma and colleagues summarised that, to date, research has shown consistently that people with ME/CFS have biological abnormalities in:
- The immune system
- Increased levels of autoantibodies – certain types of protein produced by the immune system which fight one or more proteins that are part of the body. In ME/CFS, these autoantibodies seem to be specifically against proteins involved in how cells communicate with each other to make processes in the body work – including blood pressure regulation.
- The circulatory system
- Reduction in blood flow to the brain.
- A reduction in the supply of oxygen to the tissues of the body.
- Lower rate of oxygen consumption attainable during physical exercise.
- Energy metabolism
- An abnormally low metabolic rate characterised by decreased consumption of a particular energy source (glucose) in the brain (hypometabolism).
- An increase in lactate – the product of a less efficient energy production pathway (anaerobic metabolism).
In addition, the authors highlight that the biological abnormalities identified in people with ME/CFS have been found to be associated with disease severity, suggesting that these abnormalities may play a role in the mechanisms involved in the disease.
Examples given in the paper include:
- Worsening ME/CFS symptoms have been associated with a larger reduction in blood flow to the brain.
- Higher levels of endothelial dysfunction have been linked with increased severity of ME/CFS, and more severe immune-associated symptoms such as sore throat and painful lymph nodes.
- Higher levels of disability, increased severity of ME/CFS symptoms, and more signs of autonomic dysfunction (dysautonomia) have been found to be associated with increased levels of specific autoantibodies that act against proteins in cells involved in blood pressure regulation.
Why is the disease still perceived as psychosomatic by so many – including health professionals?
The article notes that, throughout history, many biological diseases have been dismissed as psychosomatic. While the majority of these diseases – including multiple sclerosis, asthma, high blood pressure, and inflammatory bowel disease – are now accepted as ‘biological’ by medical professionals, the same cannot be said for others, including ME/CFS.
In fact, the authors highlight a key example of the dismissal of ME/CFS as psychosomatic. In 1970, the British Medical Journal published a paper by McEvedy and Beard which described the 1955 outbreak of ME/CFS (what was termed in The Lancet in 1956 as ‘benign myalgic encephalomyelitis’) at the Royal Free Hospital in London as “epidemic hysteria”.
The researchers suggest that McEvedy and Beard attributed the 1955 outbreak to psychological factors as the majority of people affected were female nurses, and, historically, many female health conditions have been dismissed as ‘hysteria’.
The authors also comment that that the description used by McEvedy and Beard has had a “profound and long-lasting effect” on how ME/CFS is seen. For example, although research now shows that the outbreak at the Royal Free is consistent with the typical spread of viral infection – and there are many other studies linking ME/CFS with an infectious onset – the view that ME/CFS is psychosomatic nevertheless persists amongst many physicians today.
Unfortunately, this is not surprising given that psychosomatic theories – which Thoma and colleagues state are inconsistent with biological evidence – are still being published today. Very concerningly, the authors note that in one study, 90% of people with ME/CFS reported that they were told by a health care provider that their symptoms were psychosomatic before receiving their ME/CFS diagnosis. ME Research UK also recalls that in a 2021 article by the European ME/CFS Research Network (EUROMENE), “serious concerns” were raised about “GPs’ knowledge and understanding of ME/CFS” – something that the authors concluded was a “major cause of missed and delayed diagnoses” for people with the ME/CFS.
Thoma and colleagues say that to improve the situation for people with ME/CFS “adequate research funding is required” – something that ME Research UK also highlighted recently in our response to the Department for Health and Social Care (DHSC) interim delivery plan on ME/CFS.
Although not discussed in detail by Thoma and colleagues, ME Research UK notes that ME/CFS continues to be a disease which receives an amount of funding that is disproportionately low in relation to both the number of people with ME/CFS and the level of impact the disease has on daily function and wellbeing. In addition, as illustrated in the 2016 ÜberResearch report, funding bodies are often seen as favouring biopsychosocial ME/CFS research projects. This ongoing lack of funding for biomedical ME/CFS research furthers the misconception that the disease is psychosomatic.
How are psychosomatic models of ME/CFS inconsistent with the biomedical evidence?
In the research paper, it is discussed that psychosomatic models of ME/CFS – such as those underpinning the now heavily criticised PACE trial – suggest that rather than biological abnormalities, it is dysfunctional thoughts and behaviours – such as activity avoidance – in people with ME/CFS that lead to the persistence of symptoms, deconditioning and exercise intolerance.
Thoma and colleagues point out that the psychosomatic models of ME/CFS have one major flaw: they go against a key management strategy for the disease – pacing.
The authors go on to describe that pacing allows people with ME/CFS to allocate their limited energy in a way that reduces the chance that their symptoms will worsen, rather than avoiding activities as the psychosomatic models suggest. Pacing not only includes planning, scheduling and dividing activities, but can include lying down, or raising the legs to reduce how much pressure is put on the system in the body that regulates blood pressure.
ME Research UK notes that in the 2021 guidelines (section 1.11.2), NICE recommend “energy management” to help people with ME/CFS “learn to use the amount of energy they have while reducing their risk of post-exertional malaise or worsening their symptoms by exceeding their limits”.
In addition, biomedical studies summarised in the research paper provide further evidence that it is biological abnormalities – rather than dysfunctional thoughts and behaviours – that lead to symptoms in ME/CFS. For example:
- Studies have shown that there are biological differences in the way the body responds to physical activity in people with ME/CFS compared to those without ME/CFS. People with ME:
- have been found to switch more quickly to less efficient anaerobic metabolism;
- take much longer to recover from the same amount of exercise as healthy controls – 2 weeks compared with only 2 days for healthy controls;
- after exercise have alterations in gene expression – meaning that their body seems to be responding differently to the exercise compared with healthy controls; ME Research UK recalls there also appear to be differences in gene expression following exercise between males and females with ME/CFS.
- Evidence has shown that decreased blood flow to the brain in the upright position is not correlated to physical fitness – and therefore is not caused by deconditioning.
What can be done to ensure ME/CFS is treated as a biological illness?
Fund more high-quality biomedical research into ME/CFS
The authors of the article state that it is essential that more funding is made available for biomedical ME/CFS research. ME Research UK highlights that this should be an amount which reflects both the number of people with the disease, and the impact ME/CFS has not only on their lives but also on wider society. This increase in funding would enable researchers to expand understanding of ME/CFS through further exploration of biological abnormalities in people with the disease – both in larger numbers of people, but also across different populations of people with ME/CFS; for example, in different countries, in males and females, in different age groups, ethnicities, and for different lengths and severity of disease – ensuring to look for differences between these groups as well as similarities, and using consistent definitions of ME/CFS which include post-exertional malaise as a required symptom.
Better education for health professionals on ME/CFS
Thoma and colleagues also highlight the importance of ensuring that medical students and other health professionals are taught that ME/CFS is a biological disease – even if, at present, the exact cause is unknown. The existing high-quality biomedical research findings must be translated into accessible content, such as webinars, for continued professional development.
ME Research UK adds that, although not specifically related to informing health professionals of up-to-date evidence on the biological nature of ME/CFS, the 2021 NICE guidelines for ME/CFS (section 1.16.1) also made a recommendation for “Training for health and social care professionals”.
More recently, in “My full reality: the interim delivery plan on ME/CFS”, the DHSC advised that educational materials on ME/CFS should include the voices of those with lived experience of ME/CFS, alongside information which helps professionals to understand “the cognitive impairment aspect and fluctuating nature of ME/CFS.” While the DHSC did recognise these learning materials must be incorporated into medical school education on ME/CFS, with research published in 2021 suggesting that there are inadequacies in teaching on the disease. Again, there was no focus on the biological nature of ME/CFS.
In their article, the research team focus on the importance of developing learning materials which are based on biomedical ME/CFS research. ME Research UK adds that, should learning materials be developed, they could include modules on the biological nature of ME/CFS; how the disease may present differently in different people, such as, but not limited to, males and females; and recognition that while living with ME/CFS (both the effect of the symptoms themselves, the stigma associated with the condition, and the ongoing misconception that it is a psychosomatic illness) may have an impact on mental wellbeing, this does not mean it is the cause of the disease. Indeed, Thoma and colleagues highlight that research has shown that psychological factors do not predict who develops ME/CFS.
Evidence-based learning materials for the wider population such as family and friends, education professionals, and other members of society
It is not only health professionals who would benefit from learning materials based on up-to-date biomedical evidence on ME/CFS – in their article, the research team states that the public should also learn “how wrong and harmful psychosomatic disease models are in ME/CFS”. ME Research UK acknowledges that many people who have ME/CFS will know someone who refuses to accept that the disease is biological. Sharing information with these people, which is both accessible and based on up-to-date evidence, may help them to understand better that research now shows that it is biological differences in how the body works which explain the persistence of symptoms in ME/CFS. While not everyone would engage in these materials, they may be a stepping stone to a better understanding of the disease, alongside resources which capture the lived experience of people with ME/CFS.
Summary of the paper
The research team provide a summary of why psychosomatic models of ME/CFS are inconsistent with evidence of biological abnormalities in individuals with the disease. The authors also discuss that research has shown that the use of psychosomatic models can lead to potential harm to people with ME/CFS. Not only does the misconception that ME/CFS is psychological in nature increase the stigma experienced by patients, but Thoma and colleagues state that it also worsens symptoms and quality of life through the impact on social relationships. It may also make people with ME/CFS less likely to seek mental health support, for example, should they experience low mood as a result of living with the disease.
The authors suggest that health professionals who dismiss ME/CFS as psychosomatic risk causing harm to people with ME/CFS – from telling them their illness is not serious, or that they are making symptoms up, to recommending potentially harmful therapies. The research concludes that a correct biomedical understanding of ME/CFS – in line with current evidence – is essential to providing adequate care for people with the disease.
Therefore, it is crucial that more high-quality biomedical research is funded, and that health professionals are provided with, and supported in completing, up-to-date and accurate evidence-based training on ME/CFS, which reflects that it is a biological disease. Resources that better educate the wider population may also help to reduce stigma, and promote understanding that research shows ME/CFS is a biological illness.
- Current evidence shows that there are biological abnormalities in people with ME/CFS – and most researchers consider ME/CFS as a biological illness.
- Despite this, there is still a misconception amongst many people – including health professionals – that the disease is psychological in nature (psychosomatic).
- A recent article has summarised why the view that ME/CFS is a psychosomatic illness is inconsistent with findings from biomedical research.
- The article also highlights how the continuing misconception that ME/CFS is psychosomatic has increased delays in research and understanding of the disease, and led to potential harm to people with ME/CFS – including misdiagnosis, delays in diagnosis and treatment, and dismissal of symptoms.
- Thoma and colleagues summarised that, to date, research has consistently shown that people with ME/CFS have abnormalities in the immune and circulatory systems, and in energy metabolism. Importantly these abnormalities can be seen across multiple studies, and findings often correlate with disease severity, suggesting that they play a role in mechanisms involved in the disease, and explain why symptoms of ME/CFS persist.
- More high-quality biomedical research must be funded to replicate findings, and further understanding of disease mechanisms in ME/CFS.
- Health professionals need to be provided with, and supported in completing, up-to date and accurate evidence-based training on ME/CFS, which reflects that ME/CFS is a biological disease.
- Resources which educate the wider population may also help to reduce stigma, and promote understanding that research shows ME/CFS is a biological disease.