http://www.economist.com/science/displaystory.cfm?story_id=11326174
The Economist
Friday May 9th 2008
Science & Technology
Myalgic encephalomyelitis
~~~~~~~~~~~~~~~~~~
The roots of chronic fatigue
May 8th 2008
From The Economist print edition
ME is a puzzling illness, but it appears to have a
biological basis and a test for it could be developed
A DISEASE that carries with it a social stigma causes
additional and unnecessary suffering. This has often
been so with myalgic encephalomyelitis (ME), or
chronic-fatigue syndrome, as it is also known.
Despite debilitating symptoms, patients have been
accused of suffering from an imaginary illness:
"yuppie flu". Doctors have struggled to distinguish
the ailing from the malingering. Nonetheless,
evidence has grown in recent years that the
syndrome is real, and now there is news that it has
its roots in genetics.
ME manifests as extreme exhaustion, something that
may include a range of other symptoms, such as
disturbed sleep, difficulties in remembering and
concentrating, headaches, and painful muscles and
joints. Psychological symptoms, such as anxiety and
irritability, can also be present. As the symptoms can
vary in severity, the syndrome can be hard to
identify, and patients can suffer for months before a
diagnosis is made.
However, new hope for ME sufferers arrived this week
at a conference in Cambridge, in Britain. The event,
organised by ME Research UK and the Irish ME Trust,
two charities that help to fund studies and assist
sufferers, was attended by researchers investigating
what causes the illness and how it could be treated.
Jonathan Kerr of St George's University of London
told the meeting that with his colleagues they have
identified 88 genes which are expressed differently in
the blood of patients who had been diagnosed with
ME. Moreover, in studying the records of 55 patients
with ME, they found that they could divide them into
seven separate sub-types that consistently pair
distinct genetic patterns with a combination and
severity of patients' symptoms. This, says Dr Kerr,
points to a biological basis for the illness and holds
out hope that a blood test could be developed to
identify its different forms. His group are now trying
to find the biological markers that such a blood test
would need to detect.
ME, myself, why?
One tactic for dealing with ME is to treat its
symptoms with drugs that are already used against
other diseases. Patients with some of the severest
symptoms suffer from low blood pressure and have
difficulty regulating their heartbeat. Julia Newton, of
Newcastle University in Britain, says this is because
of problems with their autonomic nervous systems,
which is responsible for subconscious activities. In
studies using a magnetic-resonance imaging scanner,
she found a build-up of acid in the muscles of ME
patients when they took exercise. This can cause
muscle weakness and pain. Dr Newton believes the
build-up could be influenced entirely, or at least in
part, by the degree to which the autonomic nervous
system fails to properly maintain blood flow. It could
also mean that drugs that already exist to help
improve blood flow might also help some ME
patients.
But what triggers ME? Some estimates put its
occurrence at around one in 200 people in America
and Britain. Sufferers are often in their 20s and 30s,
and more women are affected than men. That it is so
widespread suggests to some researchers that there
are many causes, including exposure to certain
viruses and other infectious diseases.
A long period of fatigue after suffering from an
infectious disease is not unusual. At the conference,
a team of Australian researchers speculated that
many cases of ME are in fact cases of
"post-infectious chronic fatigue". Stephen Graves, of
the Australian Rickettsial Reference Laboratory, said
they had found a proportion of Australian ME
sufferers may have a genetic predisposition to
developing ME as a result of exposure to Q Fever or
Flinders Island Spotted Fever. These are a pair of
relatively uncommon diseases caused by two
bacteria which can pass between animals and
humans. If their hypothesis is correct, Dr Graves
believes the incidence of ME in Australia may be
reduced by greater public-health measures.
Although the trigger for most cases of ME may
remain a mystery, the discovery of its biological
roots and the promise of a test will bring hope of a
diagnosis to sufferers. And, perhaps, inspire a
sudden recovery in the malingerers.
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Readers' comments
drjohngreensmith wrote:
May 09, 2008 05:12
There couldn't have been a more stark contrast
between the levels of intelligence manifest in the
two very different approaches, towards
understanding the cause of M.E. (Myalgic
Encephalomyelitis), finding an agreed diagnostic test
and suggesting effective treatment, than has been
illustrated by the conduct of two conferences only a
week apart.
The centrepiece of the conference, in Cambridge on 6
May 2008, organised by ME Research UK (MERUK)
and the Irish ME Trust and to which all people and
good ideas were welcome, was the promising genetic
work, which you report (The roots of chronic fatigue,
The Economist, 8 May 2008), led by Dr Jonathan Kerr
of St George's University, London, who has already
identified significant differences in gene expression
in M.E. sufferers and believes that a diagnostic test -
perhaps a simple blood test - which may suggest
appropriate treatment, is only a matter of time.
Just a week earlier, a Royal Society of Medicine
(RSM) conference, in London on 28 April 2008, to
which only a selected audience of doctors was
invited, from which patients and the press were
excluded and for which no transcripts are available,
focused on fatigue and the psychiatric origins of M.E.
for which there is no evidence and which patients
disown. There is no diagnostic test in sight and the
only recommendations are two coping, or
management, strategies, one of which, Cognitive
Behaviour Therapy (CBT) has no lasting benefit,
without relapse, for people with M.E. and the other,
Graded Exercise Treatment (GET), which makes some
patients irrecoverably worse.
Economist readers will be as equally nonplussed, as
M.E. sufferers are appalled and frustrated, that the
psychiatric approach has had £8.5m to establish a
network of clinics, which requires £millions more
each year to maintain, while not a penny piece of
public money has been spent on biomedical research
and work like Dr Kerr's has to relyon charity.
Dr John H Greensmith
ME Free For All. org
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Wendy webster wrote:
May 08, 2008 15:30
It's refreshing to see some serious broadsheets and
journals giving coverage to this recent genetic
breakthrough regarding M.E. However, it is worth
adding that Dr Kerr's groundbreaking research has
been funded solely by private donations; the Medical
Research Council refused funding to Dr Kerr
preferring to fund psychological studies which
examine the benefits of Cognitive Behavioural
Therapy (CBT) and Graded Exercise Therapy (GET).
Of course, their approach helps to support the recent
controversial NICE guidelines on M.E. (which were
drawn up by a group of psychologists) which
recommend these very therapies.
Your article highlights one tactic for dealing with ME,
which is to treat its symptoms with drugs that are
already used against other diseases. Clearly, this is
a potential option; Dr Kerr has identified existing
drugs which might benefit sufferers. However, this is
not an option within the NHS or a recommendation
from NICE.
Dr Peter White (a psychiatrist) who heads up the
nationwide NHS M.E. clinics hails the psychological
therapies (CBT and GET) as a potential 'cure' for the
disease. Meanwhile, over at the Department of Work
and Pensions, they continue to believe that M.E is
caused by stress and emotional upset!
http://www.jobcentreplus.gov.uk/JCP/stellent/groups/jcp/documents/websitecontent/dev_014174.pdf
It is, therefore, no surprise that many M.E. sufferers
(25% of whom are bed-bound) continue to be
refused benefits until they have undergone the
psychological therapies being offered by the NHS.
The Government's overwhelming support for Dr
Richard Layard's CBT bandwagon (talk comes cheap)
simply serves to support the DWP's position. Clearly,
it is difficult to see how talking therapy could
possibly have helped Sophia Mirza who recently died
from the disease.
The fact is that Dr Kerr's research and other genomic
studies such as by Dr John Gow's in Glasgow (also
privately funded) have revealed common
neurological, cancer, immunological and inflammatory
disease associations.
Their research demonstrates that we are dealing with
a complex Neurological disease with strong
immunological components; this supports the view of
the vast majority of UK charities and support groups
that the existing NHS treatment centres offering
psychological therapies should be closed and the
money spent on research into the bio-medical cause
of the disease.
Alternatively, the money should be handed over to
Neurologists who specialise in the diseases and are
far better placed to care for the 25% of sufferers who
are house or bed-bound.
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