51 Quotes About Cfs

ME’ as a medical entity was later supplanted in the 1980s by psychiatrists such as Simon Wessely, replaced by the label ‘chronic fatigue syndrome’; a fatiguing syndrome of unknown origin that exists, in part, as a result of dysfunctional illness beliefs, as well as social trends and social care systems that reward illness seeking behaviours.

The description given by a leading gastro-enterologist at the Mayo Clinic [of patients with chronic fatigue syndrome] remains accurate: 'the average doctor will see they are neurotic and he will often be disgusted with them'.

Validation is needed from the doctor ... once that is granted, the patient may assume the privileges of the sick role (sympathy, time off from work, benefits, etc.).

Studies also show that doctors may view ME/CFS patients as hostile or combative when they challenge the incumbent biopsychosocial model of ME or CFS. Yet rather than feeling threatened or worse still, viewing the patient as uncooperative, there is an opportunity to discuss the limitations of medical knowledge. Here, we believe there is an ethical duty for candour and honesty: indeed, where there are clear gaps in medical knowledge the patient voice should have even more standing.

When it comes to hierarchies of illness, evidence shows that chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME), features at the bottommost end of the medical “favoured” list. In the 1980s, newspapers helped coin the dismissive label “yuppie flu”; today, ME/CFS sufferers are still being referred to psychotherapists to work on their “faulty” illness beliefs.

Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition characterized by severe unexplained fatigue and a mixed profile of symptoms such as sore throat, painful/swollen lymph nodes, muscle pain, joint pain, headaches, unrefreshing sleep, post-exertional malaise and cognitive difficulties (K. Fukuda et al., 1994).

For the last 48 years, myalgic encephalomyelitis (ME) has been formally classified by the World Health Organisation as a neurological disorder but for the last 29 years a group of UK psychiatrists (known as the Wessely School) have denied it exists other than as an aberrant belief; they insist that it is a mental (behavioural) disorder that can be cured by graded exercise and “cognitive re-structuring”.

The diagnostic criteria for myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) define two distinct clinical entities. Cognitive impairment and post-exertional “malaise” (a long-lasting aggravation of typical symptoms, e.g., muscle weakness and cognitive “brain fog”, after minor exertion) are obligatory for the diagnosis ME, while chronic fatigue is the only mandatory symptom for the diagnosis CFS.

In July and August 2011 Simon Wessely ran a media campaign with the BBC and the broadsheets, successfully vilifying patients who had justifiably criticised his research. In his case, the marginalisation of ME patients was not ‘unintentional’. It was active and deliberate.