Researchers claim proof chronic fatigue syndrome is a bodily disease – Expert Reaction

Researchers claim they have “unequivocally proved” that Chronic Fatigue Syndrome is not a psychosomatic disease.

One of their studies finds mitochondria – known as the “powerhouse of the cell” – are dysfunctional in patients with the syndrome. A second study finds epigenetic similarities among sufferers.

The SMC asked experts to comment on the research. 

Associate Professor Tony Hickey, School of Biological Sciences, University of Auckland, comments:

“This work provides solace for sufferers of chronic fatigue syndrome (CFS), and possibly a tangible explanation that it is not a psychosomatic disorder. The researchers link CFS to fundamental metabolic pathways within mitochondria. Mitochondria provide the bulk of a cell’s power output, as they most efficiently transfer energy within food to the cellular machines in our bodies. Yet if they fail they can release free radicals that decide a cell’s fate and trigger death pathways.

“While mitochondrial dysfunction is implicated in many diseases, many accompanied by depressive states, these workers have yet to determine if CFS results from a mitochondrial defect, or whether mitochondria are victims of the CFS disease. Mitochondria were explored within PBMCs, which are a complex mixture of white blood cells within our blood borne immune systems. These present a useful model, because as PBMCs pass through the body they experience the conditions of the body, and so they may mirror the body’s net mitochondrial response to diseases. While recent evidence suggests that mitochondria can be exchanged among different cell types, not all mitochondria are the same (e.g. cardiac cell mitochondria differ vastly from those in the brain or liver). Therefore, do PBMC mitochondria reflect mitochondria of other cells?

“Clearly, work remains to clarify the cause of CFS, but for sufferers this work presents some solace, as at last there is possibly a diagnostic tool, which is accessible in the blood. It may also offer hope for a treatment, as if there is a general mitochondria dysfunction, there are an increasing number of translatable advances in mitochondrial targeted therapies.”

No conflict of interest declared.

Dr. Carolyn Wilshire, Senior Lecturer in Psychology, Victoria University of Wellington, comments:

“Chronic fatigue syndrome, or ME/CFS, is a debilitating chronic condition that severely limits a person’s functioning in all areas of life. It can strike down previously healthy people for no apparent reason. For many, the illness onset can be traced back to a severe viral infection. However, the underlying cause is still unknown and there are currently no effective treatments.

“This uncertainty about the causes of ME/CFS has led to speculation that it may be ‘psychosomatic’. Some psychiatrists and psychologists have claimed that patients’ attitude and behaviour is at fault, and that with the right ‘coaching’ (psychotherapy or exercise), they can fully recover. However, no such treatment has been shown to cure the illness, or even lead to sustained improvement. Indeed, few people with ME /CFS ever regain their previous levels of functioning. In my opinion, there is simply no support at all for the ‘psychosomatic’ view, let alone a need to disprove it.

“Having said that, I was excited to read about these two new studies, which suggest that in ME/CFS, there may be abnormalities in the proteins within various types of blood cells, and in the way some genes are expressed within these cells. These abnormalities involve metabolic, neurological and immune pathways, a finding which is broadly consistent with the key symptoms of the illness. The study suggests new research avenues that may ultimately help uncover the disease mechanism underlying this devastating illness.”

Conflict of interest statement: I have co-authored several publications that critically evaluate the evidence for behaviorual treatments of chronic fatigue syndrome (ME/CFS), including cognitive behavioural therapy and graded exercise therapy. My co-authors and I have received support to cover publication costs from the UK ME Association.

Dr Lynette Hodges, Senior Lecturer, School of Sport, Exercise and Nutrition, Massey Unviersity comments:

“I have been researching chronic fatigue syndrome for the last six years. I have been involved in research examining the physiological timeline of post exertional malaise, which is the prime symptom of the disease. Individuals with this disease report symptoms of extreme fatigue, cognitive deficits, headaches, muscle aches following exertion at all intensities even daily tasks such as showing. These symptoms persist for a number of days and months.

“The exercise testing that I have been involved in has shown that individuals with chronic fatigue syndrome are not able to replicate their power output following a two-day repeated exercise test. They generally are too fatigued and although they can physiologically push their body to the same point, they just cannot create the same amount of power output. I have also seen that some of these individuals cannot increase their heart rate or cardiac output to that expected in healthy controls, so some of these individuals may have cardiovascular dysfunction and thus I am certain that this disease is not and should not be regarded as a psychosomatic illness.

“The work of Professor Tate brings examines the biological nature of the condition and helps validate the disease by using precision medicine. The group of individuals that Professor Tate works with at Otago are well categorised and he has demonstrated that there are changes in mitochondria function that may lead to a change in energy production. There is a need for this research work to be scaled up to a bigger sample, however despite the significant amount of sufferers, this condition continues to be an underfunded.”

Conflict of interest statement: Please also note that I am involved in a current research project with the Tate group where we are examining the impact of exercise on these biological outcomes.

Dr Rosamund Vallings, General Practitioner, Howick Health and Medical Centre, comments:

“These studies provide further proof that chronic fatigue syndrome is a very real physical illness. Changes have gradually been noted in the blood, brain, biochemistry and immune system in various centres around the world, and finally everything seems to be coming together and this is a very important study.

“There is now much collaboration internationally as the various centres draw their work together. Modern technology is making much of the current work possible. Further studies will always be needed looking at changes in other diseases for comparison, so the work never ends, but now the understanding of CFS/ME is clarifying. Patients, of course, want to be able to have access to a definitive blood test to prove they have this illness, and this may still be a long way off, as the tests done are needing to be done in very specialised laboratories, and at high cost. But there is a growing feeling of relief for patients with this illness (or perhaps group of illnesses) that this is not a psychosomatic illness.”

Conflict of interest statement: I was one of the listed authors of one study – but my role was merely to supply the patients.

Dr Hemakumar Devan, Postdoctoral Fellow, School of Physiotherapy, University of Otago, comments:

“People living with chronic fatigue syndrome (CFS)/ myalgic encephalomyelitis (ME) experience ongoing severe fatigue for more than four months. Due to the invisible nature of the illness, delayed diagnosis is a common experience of people living with CFS/ME. Although there is no current New Zealand data, internationally the delay in getting CFS/ME diagnosis is 3.6 years. In addition to delayed diagnosis, lack of validation from healthcare providers have been reported as a common barrier to self-manage CFS/ME. Although graded activities and cognitive-behavioural treatments are recommended, there is no clear consensus on how best to manage CFS/ME.

“The results from these studies provide initial evidence for mitochondrial dysfunction as a potential mechanism contributing to exertional fatigue in people with CFS/ME. As the authors conclude, these results need to be validated in larger cohorts and with varying levels of CFS/ME severity. Due to the social stigma associated with the condition along with lack of effective treatments to self-manage CFS, the results provide ‘validation’ for biological processes underpinning the physical symptoms and may lead to early diagnosis and optimal management. Future studies to identify early biomarkers for CFS/ME will help optimise care pathways for people living with CFS/ME and their families.”

No conflict of interest declared.