Opinion: Dr Neil Abbot
27 Jul 2010
*David has been ill for 21 years.*
An engineer and a keen squash player, he started to feel unwell and got
progressively worse over several weeks until he felt dreadful – in his own
words, "dead on my feet."
Months later, a consultant diagnosed David with post-infectious fatigue
syndrome, now called ME/CFS. Developing the illness – extreme exhaustion,
headaches and aching limbs – forced him to leave work at the age of only 29
and return to the family home near Kirkcaldy.
The GP's assurances that he would "recover with time and rest" kept him
going for a while, but as the months wore on, he began to realise that he
was in for the long haul. And what a haul it's been. Thin, drawn, unable to
work, and largely confined to home for two decades, David says: "I've
learned to cope, but coping is not a cure. And without my family's support I
don't know where I'd be."
You rarely hear about the Davids, yet it's estimated that about 20,000
people in Scotland have ME/CFS. The condition is characterised by physical
and mental exhaustion following even moderate exercise, but most people also
have muscle pain, gastrointestinal problems and recurring flu-like symptoms,
and a significant minority are house or bedbound. Diagnosis is usually made
after the most common alternative diagnoses, like cancer or diabetes, have
been excluded. However, for many a diagnosis is only the start of their
problems. They have been given a label for which there is no known cause, no
specific treatment and an uncertain outcome.
Indeed, new patients, rather alarmingly, find two black holes awaiting them. The first is lack of credibility. The enduring stigma of "yuppie flu" and confusion with general tiredness means the public perception of ME/CFS is poor. Patients' families can, therefore, be unsympathetic, as can doctors. Indeed, studies show that roughly half of GPs don't believe the condition actually exists.
This is in spite of official and authoritative confirmation that the condition is genuine. The World Health Organisation classifies post-viral ME/CFS as a neurological illness. NICE states that symptoms can be just as disabling as multiple sclerosis, congestive heart failure and other chronic conditions.
The second black hole relates to treatment. Since the underlying causes of
the illness remain unresolved and no treatment exists, prescriptions are
given for particular symptoms, such as chronic pain or sleep problems. This
can cause patients to become disillusioned, and many tell me they have not
seen a GP for many years, preferring to struggle on alone rather than face
what they see as a lack of understanding.
Failure to appreciate the serious nature of the illness coupled with a lack
of specialist knowledge about ME/CFS is not only distressing for sufferers,
it impacts directly upon their quality of life.
This situation could be transformed if Scotland had an ME/CFS centre of
excellence. This would give GPs a place to refer patients in the early
course of their illness for expert neurological and biomedical assessment.
This is essential for a proper diagnosis since we know from studies in
England that about 40% of people diagnosed by their doctors end up getting alternative treatable diagnoses (e.g., muscle, connective tissue, endocrine disorders, sleep apnoea, depression and anxiety) at specialist ME/CFS clinics. Moreover, the centre would house professionals who have a detailed
knowledge of the condition and could refer to other specialists and receive
reports back, creating over time a large reservoir of clinical expertise.
Importantly, it would also provide a validated "research resource" of
properly diagnosed patients (something that doesn't exist at the moment)
contributing to investigations into the origin of the condition across the
world which would, hopefully, ultimately lead to treatments.
We see a similar model working successfully in the ME/CFS service serving
the north-east of England. Based in Newcastle, it's linked to world-class
research facilities at the nearby university. Government willpower and
backing would be required for a similar facility in Scotland, and is, I
believe, long overdue.
Dr Neil Abbot, ME Research UK (www.meresearch.org.uk)