What is ME and how is it perceived?

Myalgic Encephalomyelitis (ME) was first really noted in any extensive form during an outbreak at the Royal Free Hospital in London in 1955 although it is thought to have been around as early as the 1700’s. It was here that Dr Melvin Ramsay investigated the illness and defined its symptoms, believing it to be a physical problem initiated by a virus. It has been classified as neurological by the World Health Organisation (WHO) since 1969.

In 1970 two psychiatrists McEvedy and Beard wrote a paper based on information given to them by Dr Ramsay. It concluded – without ever having met a single patient and spending only 1 and a half hours with the notes – that ME was mass hysteria because the majority affected were women.

In 1988 the Centre for Disease Control (CDC) in the US investigated an outbreak in Lake Tahoe that had similar characteristics to ME but introduced the name ‘Chronic Fatigue Syndrome’ or CFS, (the US mainly uses this term but has introduced ME/CFS more recently). The 1980’s also introduced the ‘yuppie flu’ nickname in the press which further stigmatised and misinformed the public.

Once reported as the UK’s ‘foremost authority’ on ME, Prof Sir Simon Wessely, a psychiatrist also started using the term CFS (chronic fatigue syndrome) instead of ME, claiming they are the same thing but hypothesised it as dysfunctional behaviour and illness beliefs rather than an organic illness.

“Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self-reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME. Diagnosis leads to transgression into the sick role, the act of becoming a patient even if complaints do not call for it, the development of an illness identity and the experience of victimization”. Simon Wessely and Marcus S.J. Huibers: The act of diagnosis: pros and cons of labelling chronic fatigue syndrome. Psychological Medicine 2006: 36

Having written more than 600 research papers which is claimed to be based on the biopsychosocial (BPS) theory approach which is critiqued here but actually ignores the biological science of the illness (see research), his prolific work on ME influences current NICE Guidelines 2007. Ramsay’s definition of ME was conflated with CFS in the UK as described by the Oxford Criteria which is less specific and enables people with other illnesses such as depression to qualify and be misdiagnosed as having it. CFS is therefore totally misnamed given the fact ‘chronic’ means it is ongoing and therefore not curable and a syndrome requires more than one symptom, in this case fatigue which is not defining of ME (NB. When we refer to CFS in this website, this is as per the Oxford criteria). ME patients are then treated with inappropriate interventions such as Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) that have been promoted as curing this chronic illness but in reality can make patients much worse. 

I believe the label “chronic fatigue syndrome” has contributed to negative attitudes among health care providers towards patients with this disease.

Leonard Jason

The cognitive behavioural model is robustly critiqued here and it’s significance and influence in the US has been extinguished by the Institute of Medicine report resulting in the retirement of the Oxford definition and withdrawing CBT and GET as treatments after looking at the evidence.

ME/CFS is a serious, chronic, complex, systemic disease that often can profoundly affect the lives of patients.

Institute of medicine report 2015

A media campaign from the Science Media Centre (which Simon Wessely is a founding board member) has also resulted in further stigma for patients by labelling patients as militant and dangerous when they speak up against this treatment.

More recently the threat to the ME diagnosis is Medically Unexplained Symptoms (MUS) which lumps all sorts of problems into one diagnosis to be treated with CBT and /or antidepressants and encourages a form of graded exercise for those with ME. A potentially very harmful path for patients since a somatic illness code is given which can lead to doctors not investigating physical problems. ME may now also be given the name Functional Neurological Disorder (FND) which is classified as psychosomatic by the WHO and follows the same pathway as MUS. History keeps repeating itself with poorly understood illnesses assumed to be somatic eg Asthma, MS, Parkinsons, peptic ulcer, and many more.

In 2011 a group of experienced international researchers and clinicians volunteered their time (unsponsored) to properly define the illness based on biomedical research and clinical experience to produce the International Consensus Criteria (ICC). The ME Patient Foundation believe this to be the most useful criteria for research and diagnosis, for reasons why please see Why The ICC Criteria? (NB. When we refer to ME in this website, this is as per the ICC Criteria)

An accurate diagnosis is obviously important for the patient and the managing doctor in determining treatment plans but because ME has been so conflated over the last 30 years and more misdiagnosis is high at around 50%. Missed diagnosis and under diagnosis (how many are actually diagnosed with ME ICD G93.3 rather than CFS?) are all serious problems that can lead to inappropriate treatment due to the lack of knowledge amongst physicians – see current harmful NICE guidelines. It is now unfortunately a confused field of work and as such until more accurate research is able to distinguish the mess we find ourselves in any diagnosis and treatment should be treated with due caution.

Currently there are no official treatments for ME, however many patients use pacing as a technique to prevent worsening of symptoms and manage the illness. Please see our useful information page for helpful documents.