It's time for doctors to apologise to their ME patients
For too long the medical community has dismissed 'Chronic Fatigue
Syndrome' as a mental illness which can be cured with therapy and
By Dr Charles Shepherd
9:35AM GMT 07 Dec 2015
Back in 1955, a mysterious polio-like illness affected 262 doctors and
nurses at London's Royal Free Hospital. The hospital had to close for
just over three months.
The outbreak was written up in The Lancet and a new neurological
disease entered medical language: myalgic encephalomyelitis, or ME, as
it still remains in the WHO Classification of Diseases. "Myalgic"
referred to the muscle symptoms; "encephalomyelitis" referred to the
various neurological symptoms.
Others were not convinced that ME was a neurological disease, and two
decades later two psychiatrists, without interviewing any of the
patients, wrote a paper for the British Medical Journal where they
concluded that the Royal Free outbreak was due to mass hysteria.
The mud from the BMJ stuck. Like most doctors at the time, I left
medical school believing that ME was not a real disease and I would
probably never see a case. I was wrong.
Ignored or dismissed by doctors, people with ME went undiagnosed or
misdiagnosed for long periods of time, often combined with harmful
management advice – as is still the case. I can confirm this after
developing classic ME following chickenpox, caught from one of my
hospital patients. Some developed severe ME, becoming housebound or
bed-bound with no medical help. Some never recovered.
During the 1980s, ME was redefined and given a dreadful new name:
chronic fatigue syndrome (CFS). The term CFS trivialised a serious
medical condition – the equivalent of trivialising dementia by calling
it a chronic forgetfulness syndrome – and shifted the focus from a
"disease" to a single symptom, "chronic fatigue".
CFS also brought in a much wider group of people suffering from
chronic undiagnosed fatigue. A powerful body of psychiatric opinion
convinced the medical profession that CFS was basically a mental
health problem whereby people became trapped in a vicious circle of
abnormal illness beliefs and behaviours, inactivity and
deconditioning. In other words, there was no "disease" present.
The CFS model of causation resulted in two controversial forms of
behavioural management – cognitive behaviour therapy (CBT) and graded
exercise therapy (GET) – being recommended by NICE as the main form of
Now we have the PACE trial – the largest and most recent assessment of
CBT and GET, which has cost the taxpayer almost £5 million. At long
term follow-up, and contrary to what was reported in the press, the
PACE trial found no significant difference between CBT, GET, adaptive
pacing and specialised medical care.
Public reaction to the spin that has been put on the PACE trial
results for CBT and GET has resulted in over 10,000 people signing a
petition calling for claims relating to so-called recovery to be
retracted and six academic researchers calling for an independent
review of the study.
By contrast, in evidence collected from 1,428 people with ME by the ME
Association, for which I am medical adviser, 73 per cent reported that
CBT had no effect on symptoms while 74 per cent said reported that GET
had made their condition worse. The MEA has therefore recommended that
NICE withdraws their advice relating to GET.
On the progressive side of this medical divide are physicians and
researchers who, like the patient community, believe that ME is a
serious multi-system disease, often triggered by infection, but
maintained by abnormalities involving, neurology, muscle, and the
In the UK, a research collaborative with a strong emphasis on the
biomedical research has been established. And a major report from the
prestigious US Institute of Medicine has recently concluded that ME is
a "serious, chronic, complex, systemic disease that can profoundly
affect the lives of patients". ME is not a psychological problem.
Biomedical research into ME is revealing abnormalities in the way that
muscle creates energy, along with evidence of an ongoing overactive
immune system response. New types of brain imaging are demonstrating
low-level inflammation in several specific parts of the brain.
At the same time, a large multi-centre clinical trial is taking place
to assess the use of Rituximab – a drug that depletes immune system B
cells and which is normally used to treat a form of cancer called
The argument here is not with mental illness, which is just as real
and horrible as physical illness. As with any long-term illness, some
people will develop mental health problems where talking therapies can
clearly be of help.
The argument is with a simplistic and seriously flawed model of
causation that patients know is wrong and which has seriously delayed
progress in understanding the underlying cause of ME and developing
effective forms of treatment.
Opening the 2015 research collaborative section of neuropathology,
Jose Montoya, professor of medicine at the University of Stanford,
said: "I have a wish and a dream that medical and scientific societies
will apologise to their ME patients."
I agree – the time has come for doctors and scientists to apologise
for the very neglectful way in which ME has been researched and
treated over the past 60 years. Doctors need to start listening to
their patients and there must now be increased investment in
biomedical research to gain a better understanding of the disease
process and to develop treatments that these patients desperately
Dr Charles Shepherd is medical adviser to the ME Association
Symptoms of Chronic Fatigue Syndrome
The main symptom of CFS is persistent physical and mental fatigue
(exhaustion). This does not go away with sleep or rest and limits your
Most people with CFS describe this fatigue as overwhelming, and a
different type of tiredness from what they have experienced before.
Other symptoms include:
- Muscular pain, joint pain and severe headaches
- Poor short-term memory and concentration, and difficulty organising
thoughts and finding the right words ('brain fog')
- Painful lymph nodes (small glands of the immune system)
- Stomach pain and other problems similar to irritable bowel
syndrome, such as bloating, constipation, diarrhoea and nausea
- Sore throat
- Sleeping problems, such as insomnia and feeling that sleep is not refreshing
-Sensitivity or intolerance to light, loud noise, alcohol and certain foods