Fatigue syndrome is not all in the mind
News Desk
Times2
Peta Bee
Changes in the brain and cell activity may be the key to treating CFS
In the Eighties it was known as yuppie flu, a catch-all term for an
undefined illness that was seemingly the consequence of a high-flying,
high-achieving lifestyle. Its symptoms - exhaustion, joint pain,
sleep problems, impaired memory, inability to concentrate - were real
to sufferers but questioned by a medical profession that largely
considered them imaginary and dismissed the afflicted as malingerers or
hypochondriacs.
Yet it hasn't gone away. Around 250,000 people in the UK are
estimated to suffer from chronic fatigue syndrome (CFS), as it has
since become known. Only now is research offering proof of
physiological under- pinnings to a condition that was written off by
many as a mysterious affliction of the psyche.
A campaign launched this month by the American Centres for Disease
Control and Prevention (CDC) is typical of the change surrounding the
syndrome; its aim is to instil in both patients and physicians that
this is a disease to be taken seriously. It comes five years after the
UK Government's Chief Medical Officer declared it a genuine chronic
illness and its classification by the World Health Organisation as a
neurological disorder.
Characteristically, these medical organisations agree: CFS begins with
routine flu-like symptoms, but can result in years of chronic, painful
fatigue that, crucially, is not improved by bed rest. It can affect
anyone of any age - there are estimates that 25,000 children and
teenagers in Britain have the condition. A recent survey by the charity
Action for ME suggested that 55,000 people are so badly affected that
they are either bedbound or housebound.
Yet with no recognised cause, diagnosis and treatment, the illness has
remained problematic. Experts cannot even agree on what to call it -
most widely known as CFS, it is also called myalgic encephalomyelitis
(ME) or post-viral fatigue syndrome (PVFS).
With emerging evidence of its biological basis, however, the way CFS is
viewed is changing. "There is no doubt that this is a genuinely
physically disabling condition, which is not in the mind," says Dr
Charles Shepherd, medical director of the ME Association. "We have
long known that many people, although not all, initially get it after a
viral infection, such as the Epstein-Barr virus that causes glandular
fever. But in the past few years the medical profession's
understanding of the biological elements of the illness has progressed
considerably." According to the CDC, researchers have analysed the
activity levels of 20,000 genes in people with CFS and found
abnormalities in genes triggering the brain activity that mediates a
stress response.
Anthony Komaroff, a professor of medicine at Harvard Medical School and
a spokesman for the CDC campaign, says that brain functioning and cell
energy metabolism appear impaired in those with CFS. Dr Nancy Klimas, a
researcher at the University of Miami School of Medicine and president
of the International Association for Chronic Fatigue Syndrome, and
other investigators have shown that different types of cells within the
immune system are abnormal either in number or in their capacity to
function in these patients.
Another significant advance came last summer when researchers at
Georgetown University Medical Centre suggested that CFS may be rooted
in distinct neurological abnormalities that can be medically tested. In
a paper published by the Neurology Journal, Professor James Baranjuk
reported that patients with the condition have a set of proteins in
their spinal-cord fluid that were not detected in healthy subjects.
These proteins, Baranjuk proposed, might give insight into the causes
of the illness and could be used as markers to diagnose it. "For
years patients with CFS have suffered with painful symptoms for which
there is no blood test, diagnosable physical condition, or any method
for doctors to measure improvement," he says. "Our research
provides initial evidence that it may be a legitimate neurological
disease and that at least part of the pathology involves the central
nervous system."
Shepherd welcomes the glut of new studies into causes, claiming that
any new knowledge about CFS can only help to develop better treatments.
"To date, most patients are prescribed a graded exercise programme to
enable them to manage their lifestyles better," he says. "Pacing
- a system in which patients are prescribed physical activity in
short bouts - is often effective as long as it is carefully
controlled and individually tailored."
Some physicians advocate a more aggressive exercise programme - "a
sort of push through the pain barrier approach" - that Shepherd
says "is highly controversial and not recommended by ME charities.
Around 50 per cent of people trying a more intensive exercise recovery
programme experience a significant relapse."
But, equally, Shepherd says "the way out of CFS is not to lie in
bed".
Currently, he says, prognosis is "pretty bleak and a full recovery is
unlikely. People with CFS generally fall into one of three categories:
those who are severely affected (around 25 per cent) are wheelchair or
house-bound; the majority find that their condition stabilises, albeit
in a remitting fashion, to some extent after one or two years; only a
minority get back to 'reason ably good health'."
Around 77 per cent of sufferers in the UK have lost their jobs because
of the illness at an annual cost to the country of £6.4 billion. Last
year CFS was given as the official cause of death for the first time in
the UK when a coroner in Brighton recorded the death of a 32-year-old
woman as acute aneuric renal failure (failure to produce urine) because
of dehydration as a result of CFS, from which she had suffered for six
years.
All of which make the promising signs that some drug treatments might
help even more welcome.
Earlier this month Professors Jose Montoya and Andreas Kogelnik, of
Stanford University, announced that they were to begin a major study on
the drug Valcyte (valganciclovir), an antiviral medication that is
often used to treat herpes- related diseases.
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