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ME: Proof that it isn't all in the mind?
Belgian doctors, Professor Kenny De Meirleir and Dr
Chris Roelant, have developed a simple test that,
they claim, solves the mystery of 'yuppie flu'.
By Liz Hunt
Anna's deterioration was rapid and unrelenting. One
moment the pretty, young Scandinavian woman was
at the peak of youthful vitality, newly married and
excited about the future. The next, that future was
much diminished, her life limited to the environs of
her bedroom, and dictated to by the illness that had
It had started with persistent fatigue, muscle pain,
and a growing sensitivity to light after a honeymoon
trip to Mexico in the summer of 2006. By December,
she was in a wheelchair. Three months later she
was bedridden, her face pale, her features shrunken,
barely able to move or talk, and being fed through a
Anna – not her real name as her identity is being
protected at the request of her family – was the
subject of a short film shown at a conference in
London last week. Her case, according to Professor
Kenny De Meirleir of the Vrije Universiteit Brussel,
Belgium, illustrates the worst ravages of myalgic
encephalomyelitis/encephalopathy or ME, also known
as chronic fatigue syndrome or post viral fatigue
Once it was derided as "yuppie flu" because,
following its emergence in the early Eighties, its
"typical" victim was, supposedly, a high-achieving
young professional. ME was also assumed by many
doctors, and much of the public, to be
psychosomatic in origin – if it existed at all.
In more enlightened times, ME is now accepted by
the World Health Organisation, and Britain's medical
royal colleges, as a complex, chronic disease of
varying severity characterised by a complex set of
symptoms. (In addition to extreme fatigue, and
general malaise, there are musco-skeletal
symptoms, especially muscle pain, brain and central
nervous symptoms, evidence of immune system
dysfunction, mood swings, depression etc.)
According to the ME Association, there are 250,000
sufferers in Britain.
The debate about the cause of ME continues to
flourish at conferences, in journals and on websites:
are the symptoms a physical manifestation of a
problem in the brain such as a chemical imbalance;
is sustained stress or exertion to blame; or is ME the
result of abnormal physiological functioning, with an
organic cause, such as a viral or bacterial infection,
or exposure to a toxic agent?
The answer is crucial because it determines the
direction of research funding which has, according to
Prof De Meirleir, for too long been skewed in favour
of a psychiatric approach. He hopes to change that.
After more than 20 years of investigation, and having
assessed and treated thousands of patients in
Europe and America, Prof De Meirleir, who is an
internist at the Himmunitas Foundation in Brussels
(a non-profit organisation specialising in chronic
immune disorders), believes he has identified a
mechanism to explain the development of ME that
opens up new treatment options.
In addition, he and his fellow Belgian, Dr Chris
Roelant, Chief Operating Officer of the diagnostics
company Protea biopharma, have developed a
self-diagnosing urine test for ME.
If they are correct – and that must be determined by
scrutiny of their research and use of the test by
other scientists and doctors – then it marks an
The symptoms of ME are wide-ranging and occur in a
number of other conditions, so a diagnosis of ME is
currently reached only after eliminating other
"This test will tell patients that it is not a problem
between their ears, but a real physiological
problem," insists Dr Roelant.
Prof De Meirleir and Dr Roelant have, somewhat
controversially, opted to go public with their findings
before publication in a peer-reviewed journal. They
say this is because of the implications of their
research, especially for severely debilitated ME
At the Invest in ME conference in London last Friday
they also raised the possibility of "transmissability"
of the illness in this group of patients – another
Prof De Meirleir has never believed that ME is an
"illness of the mind". Exercise physiology was his
initial area of expertise and it was in this capacity
that he was asked by a psychiatrist to assess some
of his patients who were suffering from a mystery
illness characterised by extreme fatigue.
"One of them was a banker who started work at 9am
and had to finish at 11am because he was so
exhausted," says Prof De Meirleir. "He did not appear
to be suffering from any psychiatric disorder."
The case ignited the young doctor's interest. During
a six-month sabbatical at the University of
Pennsylvania in 1990, he heard about the "Lake
In 1984, hundreds of people living in a small town
on Lake Tahoe in California succumbed to a flu-like
illness. The symptoms, including fatigue,
neurological and immunological symptoms, persisted
in just under 10 per cent of the population (about
300). This was followed by numerous reports of
outbreaks of a similar illness around the world, and
persuaded Prof De Meirleir of the likelihood of a
causative agent being involved in ME, a fact that has
heavily influenced his research interests.
Since the early 1990s, he has built up a large clinical
practice in Brussels where he sees around 2,000 new
patients a year. Antibiotics are a cornerstone of his
therapeutic approach, as dictated by his research.
In recent years, and in collaboration with a
microbiologist, Dr Henry Butt, and his team at the
University of Melbourne, Prof De Meirleir has focused
on bacteria in the gastro-intestinal tract.
"This is an obvious place to start since 80 per cent
of immune system cells are located here," he says.
A healthy, functioning gut is colonised by "good"
bacteria that aid digestion and contribute to our
Many ME patients suffer from multiple intestinal
symptoms, and Prof De Meirleir believes that an
overgrowth of "bad" bacteria, including enterococci,
streptococci and prevotella, is to blame.
These bacteria are normally present in very small
quantities in a healthy gut, but can initiate a
sequence of events leading to the multifarious
symptoms of ME if they proliferate. (This research
will be published in the journal In Vivo, in July).
These "bad" bacteria produce hydrogen sulphide
(H2S)– a gas naturally occurring in the body, where
it has several functions – in minute quantities.
However, in larger quantities, it is a poisonous gas
that suppresses the immune system, and damages
the nervous system, according to Prof De Meirleir.
(Hydrogen sulphide is produced by some animals in preparation for hibernation because it "shuts down" the body which, in effect, is what occurs in ME.)
In addition, Prof De Meirleir described how he
believes the gas reacts with metals, including
mercury, introduced in minute amounts as
contaminants in food. The form of mercury produced
after reacting with hydrogen sulphide also disrupts
the normal production of energy (known as the Krebs
Cycle) by individual cells, and this, he says, would
explain the energy shortfall experienced by ME
Normal cellular functioning is inhibited and, over
time, this generates damaging free radicals, highly
reactive molecules that distort the structure of key
proteins, such as enzymes and hormones, necessary
for chemical reactions.
This results in what Prof De Meirleir calls "aberrant"
proteins (or prions), which lead to further symptoms
as the body is increasingly compromised, and which
he says may play a role in the transmissibility of ME.
The urine test, developed by Prof De Meirleir and Dr
Roelant in their privately funded research, detects
the presence of hydrogen sulphite metabolites,
which they say confirm the presence of abnormal
quantities of hydrogen sulphide-producing bacteria.
The intensity of the colour change in the urine
indicates the severity of the disease progression.
Not every ME patient progresses to its most severe
form, says Prof De Meirleir, but the varying
symptoms can all be explained by this proposed
mechanism for the disease.
In the worst cases of ME, he says it can be shown
that there is an almost complete eradication of
"good" bacteria (such as E. coli), the presence of a
high number of "bad" bacteria in stools, metal
deposits in tissues, and the presence of aberrant
proteins in saliva.
"What we have shown is that these patients have an organic disease involving one of the most toxic substances [H2S] that exist," he says.
So what causes the proliferation of
harmful bacteria in the first place?
There are, he says, many potential triggers ranging
from food- borne bacterial (eg salmonella)
infections, viruses, and toxins, or mental stress. He
says many ME sufferers have a history of gut
disorders including gluten and lactose intolerance,
which may predispose them to colonisation by
enterococci and streptococci.
Anna, the 28-year-old Scandinavian patient, is
typical in this respect, he claims; she had gut
problems in the past, including possible food
poisoning while in Mexico. Her treatment focuses on
short courses of antibiotics to decrease the numbers
of bad bacteria, treatment with probiotic
supplements to help restore the good bacteria, plus
vitamin and mineral supplements. "She is improving,"
says Prof De Meirleir.
ME support groups and the medical profession are
now considering Prof De Meirleir's work. However, Sir
Peter Spencer, chief executive of Action for ME,
welcomed the findings: "It is always heartening to
see new developments that might bring hope to the
250,000 people in the UK affected by this horrible
illness, he said.
"We look forward to seeing Professor Meirleir's
findings published in a peer-reviewed journal so that
we can develop a better understanding of this
Prof De Meirleir says that helping patients like Anna,
of whom he has known many, is what has brought
him to this point.
"This has preoccupied me for more than 20 years.
I told [the psychiatrists] we would find a cause,
and I believe we have."
There are many ME patients and their families who
must hope that he is right.
* For more information on the ME urine test see