Q: What is it about
chronic fatigue syndrome that makes it so challenging for many people —
patients themselves, doctors, family members?
A: Fatigue is a universal human experience, and in fact most people are
very hard-working and feel fatigued a lot of the time. And severe fatigue is
one of the most common complaints that people bring to their physicians.
Because so many people have general fatigue and continue to function, they
think, “What’s that? That’s not a disease, it’s just a fact of life.” So
there’s a perception both among medical personnel and the lay public that
it’s something that you push yourself through, you deal with it. There’s a
tendency to think, “Well, you’re stressed out, get some better sleep, take
With heart disease or
AIDS, you have an immediate feeling from your family, your work
associates, your friends, that this is something we need to be sympathetic
to, we need to make accommodations for. What’s strikingly different about
this illness is that the majority of people not only have to deal with a
particularly debilitating health problem, they also have to deal with the
stigma and societal reaction and disbelief and illegitimacy, and that is
crushing, Your work colleagues say you’re malingering, medical personnel say
there’s nothing they can find so they’ll refer you to a psychiatrist, and
your friends begin to complain that you’re never calling them, you’ve
rejected them. So this person is in the whirlwind of a terrain of disbelief
that is probably in some ways unique.
Q: Has the perception of C.F.S. changed over the
A: I spend a lot of my time giving talks to audiences of people I don’t
know, and I feel it’s very different today — vastly different than 20 years
ago. At that time, no one had heard of it and there was almost universal
disbelief. Today, that is much, much less. I don’t mean to suggest that
there is no skepticism remaining. It’s still present. But it is my opinion
that the people who are skeptical haven’t really looked at the literature.
It’s easy to nurse your skepticism when you haven’t really bothered to look.
Q: How much would you associate the skepticism with
the name “chronic fatigue syndrome,” which is used in the United States,
instead of names like “myalgic encephalomyelitis” or “myalgic
encephalopathy,” which are more common in other countries?
A: The name is unfortunate. It’s a terrible name, because fatigue is the
focus and that is differently experienced by people who are healthy than by
people who have this illness. I do think if we called
cough syndrome,” you’d probably have very little respect for those
people, but a name that’s more medical sounding changes people’s
When you have a more medical-sounding name, you’re saying the illness is
not something fluffy, to be downplayed and ignored, and health care
personnel think of it as more serious, more debilitating. I hope there will
be a new name, but the problem is you don’t change names lightly, even bad
names, because people come to recognize an illness by a name. I think
changing it will confuse a lot of people, so it better be a new name that
has broader acceptability among patients and researchers.
There is a movement developing around the world of people using different
terms, and some are using the term M.E./C.F.S. The C.D.C. and the CFIDS
Association are two of the last large organizations in the United States who
have not come aboard.
Q: There are many people who think C.F.S. is just a
depression. What’s the connection between the two?
A: The fast answer is, if you want to do a quick diagnostic test, you
could say, “If you were well tomorrow, what would you do?” And the person
with C.F.S. would give you a list of things that they want to get back to in
their life, and the person with classic depression would probably say, “I
Eighty percent of people who have depression have fatigue, but it’s not
their most serious complaint. They might have sleep problems, and some
cognitive problems that are common, and they can end up being brought into
the case definition for C.F.S. Some people with this disease do have
depression. If you basically have a person who says they were feeling pretty
good, now they’re sick, and then they get depressed, they could have
depression as well as the illness. The real critical problem is when you
have a person who has solely depression and does not have this illness, but
has fatigue. So if your case definition is imprecise and you blur the
categories, and that brings into it people who don’t have the illness, you
ultimately have problems with estimating how many people have it.
Q: Why does the estimate of how many people have the
A: This all goes back to case definition. If it includes people who don’t
have the illness, some might say that at least there are advantages to that
because it gives C.F.S. higher rates and more attention. So if there are
millions of people with this illness, it might make the policy people take
it more seriously. I think one needs to be wary of that, because if you do
research with this broader group of people, and some of them don’t have the
illness, and the question is what is the biologic data, how do you interpret
that? If you have patient samples that are different, ultimately what will
happen is it’s very hard to find genetic or biological markers because
there’s been such imprecision in how it’s been identified. So what happens
is that people say, “We can’t find anything, it must be psychogenic.”
Q: You were diagnosed with C.F.S. many years ago. How
did that affect you?
A: That triggered my interest. I got C.F.S. in 1990 after having
mononucleosis, and ended up having to leave my work for about a year and
a half. I said to myself, “Well, gee, if this is affecting me like it is, I
should try to do some research.” I knew a little bit about it, beforehand,
and then I started reading the literature.
The epidemiology done by the C.D.C. was atrocious. What I read was that
this was an extremely rare disorder that affected less than 20,000 people,
that it was primarily psychological, that it affected primarily
upper-middle-class people, that it had a case definition that was put
together by consensus and not by research methods, and that it had a name
that was pretty trivializing. The prevalence research was very poorly done.
The tests they were using were inappropriate and had a real bias for
psychiatric morbidity. I realized that one needed to do basic work in
diagnostics and basic work in epidemiology. I looked at it and said, “Hey,
I’ve got enough work here for the next decade.” It was a real work
opportunity for me.
Q: How did you recover?
A: I would say that it was a very slow process. I had the good fortune
that most people don’t have, in that I had resources. I was a tenure-track
professor with a good income who had people rooting for me, and nobody every
questioned me or said you’re making this up, or it’s not serious. Everyone
knew I was a very hard worker, and they wanted me back. How many people who
get sick with this have that opportunity? So they made it possible for me to
build myself back up. I had benefits and a full salary. I had a work setting,
and a friendship setting and a support setting that most people don’t have.
Most people, the first thing that happens is they lose their job, and then
they don’t have enough money. I’m still somewhat careful about how much I do
and what I commit to. I think of myself as being 70 to 80 percent back, not
Genetic predisposition may cause ME
14 hours ago
The debilitating disease ME may be caused by a
genetic predisposition, according to new research.
Researchers from St George's University of London
discovered a correlation between certain genetic
differences in patients with myalgic
encephalomyelitis (ME) and are working on a
diagnostic test based on their findings.
Other research suggests that those who are
predisposed to the disease only develop it after it is
triggered by a bacterial illness.
At present there is no diagnostic test or cure for ME,
also known as chronic fatigue syndrome (CFS), which
affects about one in 200 people.
Doctors are only able to diagnose the disease after
ruling out every other possible cause and treatments
are based on the psychological aspects of the
The disease causes extreme exhaustion lasting for at
least six months, along with a combination of sleep
disturbances, memory and concentration difficulties,
sore throat, tender lymph nodes, headaches and pain
in the muscles and joints. In its most extreme form,
ME leaves sufferers bed-ridden and can even be
The research will be presented at an international
conference on the disease at the Wellcome Trust
Conference Centre in Cambridge.
The meeting of researchers and clinicians has been
organised by ME Research UK and the Irish ME Trust
to highlight the latest advances in identifying the
biological origins of the disease.
Researchers at St George's University of London have
discovered 88 genetic differences in ME patients,
allowing them to divide sufferers into seven
sub-types, corresponding to different combinations
and severities of symptoms.
Dr Jonathan Kerr is due to tell delegates: "We must
now determine what these sub-types represent, as
they appear to be biologically meaningful, and
discover their natural history and possibilities for
Page last updated at 23:02 GMT, Monday, 5 May
'Seven genetic types of ME' found
"It's a hard illness to get a handle on, so a
clinical test would be the single best way
forward for everyone"
Neil Abbot, ME Research UK
Geneticists have identified a biological basis for
seven different subtypes of chronic fatigue
The researchers from St George's Hospital, University
of London, hope the work could lead to a blood test
to distinguish between the forms.
Campaigners hope it will help counter the opinion,
which remains in some quarters of the medical
profession, that it is a psychological condition.
The research findings are to be presented to a
conference in Cambridge.
Chronic fatigue syndrome (CFS), also known as ME, is
a condition with a diverse range of symptoms but
particularly characterised by profound muscle fatigue
after physical exertion.
In its most extreme form, CFS/ME leaves sufferers
bed-ridden. There is currently no diagnostic test or
It affects around one in 200 people.
The St George's study looked at 55 patients from the
US and UK with the condition, and carried out a
genetic analysis of them and 75 healthy blood
It identified the seven distinct subtypes of CFS/ME
identified by a specific genetic pattern.
These were linked to specific symptoms.
Type one had the worst anxiety and depression
levels, along with poor sleep and high pain levels.
Type two was characterised by significant
post-exercise fatigue and joint and muscle pains,
while type three was the mildest form of the
The research identified type four as linked to
moderate levels of body pain and sleep problems,
with type five having stomach complaints and the
most marked muscle weakness.
Type six was specifically connected to fatigue, and
type seven had the most severe symptoms including
pain, swollen glands and headaches.
Type four and type six were the most common forms
of the condition.
Dr Jonathan Kerr, who led the St George's research,
said: "We must now determine what these sub-types
represent, as they appear to be biologically
meaningful, and discover their natural history and
possibilities for treatment."
Neil Abbot, of ME Research UK, which is organising
the conference along with the Irish ME Trust, said:
"The discovery of a 'thumb-print' for the illness
would be the single greatest advance that could
be made because, at the moment, diagnosis is on
the basis of a set of vague symptoms association
with other illnesses.
"It's a hard illness to get a handle on, so a clinical
test would be the single best way forward for
US and British Researchers highlight
distinct subtypes of myalgic encephalomyelitis
US Researcher Announces Successful
Treatment For A Subset Of ME/CFS Patients
Researchers have identified distinct
myalgic encephalomyelitis (ME/CFS – also referred to
as chronic fatigue syndrome) and there is renewed
hope that treatments are available for this
debilitating neurological illness.
One of these researchers is Dr A. Martin Lerner from
Michigan, USA who will be revealing his ground
breaking data from observations over the last seven
years at the forthcoming International ME/CFS
Conference 2008 in Westminster, London, on 23rd
Dr Lerner’s research indicates that specific long-term
anti-herpesvirus pharmacokinetic administration of
the drug valacyclovir/valganciclovir provides
long-term significant benefit to one group of ME/CFS
patients. Dr Lerner has identified two specific groups
of patients; one with Herpesvirus Illness (EBV,
HHV6, HCMV) with no co-infections and another
Herpesvirus Illness with co-infections such as Lyme
Disease, Babesiosis, Adult Rheumatic Fever and
Mycoplasma Pneomoniae Myocarditis. Dr Lerner is the
most experienced ME/CFS doctor in the world with
long-term experience of treating an identified subset
of patients with antivirals and has over twenty years
of experience studying ME/CFS. He will be presenting
his extensive data at the London conference,
organised by the charity Invest in ME.
The theme of the conference is Sub Grouping of and
Treatments for ME/CFS and the conference is
changing the view that ME/CFS can be treated with a
one-size-fits-all approach to treatment which the
government and the National Institute for Clinical
Excellence (NICE) have been advocating until now.
There is growing evidence of different subtypes and
viral involvement in ME/CFS and the conference has
aroused interest from the Chief Medical Officer and
the UK Medical Research Council, both of which will
be represented at the conference.
Other speakers at the conference include Dr Jonathan
Kerr from St George’s University, London who has
recently published a study identifying seven different
genomic subtypes of ME/CFS and Dr John Chia, an
infectious disease specialist from California, USA,
who has is investigating antiviral treatments against
enteroviruses as his recently published research
showed that 135 out of 165 (82%) patients had
stomach biopsy results that stained positive for
enterovirus antigens compared with 7/ 34 (20%) of
Dr Judy Mikovits, research director from the unique
Whittemore Peterson Institute (WPI) in Nevada, USA
will also be talking about the institute’s future plans
for research and will be presenting data on a distinct
subgroup of patients that is characterized by a
significantly increased incidence of the development
of Non-Hodgkins Lymphoma (NHL).
Myalgic Encephalomyelitis (ME/CFS) is defined by
the World Health Organisation as a neurological
illness (code WHO-ICD-10-G93.3). With an
estimated 250,000 sufferers of ME/CFS in the UK
alone, of which 60,000 (one quarter of the
people) are severely affected, many of them
children, the illness is thought to cost the UK
economy over £6 billion per year. Little public
funding of biomedical research is currently
provided by the government.
The varying symptoms experienced by many
severe ME/CFS sufferers may include: -
post-exertional malaise, general chronic
weakness of limbs, cognitive problems such as
memory loss & concentration difficulties, severe
headaches, problems with balance and fine motor
control, muscle pain, light sensitivity,
vocal/muscular limitations, hypersensitivity, sleep
& temperature disturbance, cardiovascular
symptoms, digestive disturbances, neurological
disturbances. In its most extreme form it can
leave sufferers bedridden and can even be fatal.
It is hoped that the conference, bringing to an end
ME Awareness Month, will kick-start publicly funded
biomedical research into ME/CFS based on a more
relevant and scientific approach to diagnosis and
treatment of the illness.
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
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
PERMISSION TO REPOST
An interview with Prof Dr Kenny De Meirleir about
the specific problems of children with ME will be
broadcasted between 8h30 en 9h am, (12th May
GMT +1 hour) on the Flemish radio, Radio One or
The Flemish Television VTM, the Belgian Television
VRT and the German Broadcasting company ARD
will be present at the conference 'Children with
ME', which takes place on Monday 12th in Bruges.
We hope they will broadcast an item at the seven
o'clock news on their respective channels.
Please visit our website
more information. A DVD of the conference
will be availble.
Please repost this message to as many as you
The board of vzw MEAB
ME Association launch new survey to coincide with ME
ME (myalgic encephalomyelitis) is an illness that affects around 250,00
people in the UK, including children and teenagers. Despite being
recognised as a serious and disabling condition by the Department of
Health, many people experience great difficulty when it comes to
obtaining a diagnosis or help with management. So to mark ME Awareness
Month, The ME Association wants to hear from as many people as possible
about their experiences – good or bad – of coping with ME. To
do this we have produced a questionnaire which asks about treatments
that work, treatments that don't work, and what people want when it
comes to GP and hospital based services. We also want to build up the
biggest ever picture of what happens when people are given cognitive
behaviour therapy or graded exercise therapy – two controversial
forms of treatment that have been recommended in a guideline produced by
NICE. We can then go back to the Department of Health with a really
comprehensive nationwide picture of this illness, along with
recommendations on how diagnosis and services can be improved.
NEW ALERTS SERVICE FOR YOUNG PEOPLE WITH ME
For ME Awareness Month, The Young ME Sufferers Trust is launching a new
email Alerts Service to keep young people with ME and their families bang up
to date. There is no need to join the Trust to sign up for the Alerts and
they are available worldwide.
Full information on the new service and free publications are at
The Trust is the longest running organisation for young people with ME and
their families. As its Executive Director, I am a former headteacher, a
former severe sufferer, and joint author of the biggest ever study of ME
which found that ME is the biggest cause of long term sickness absence from
school (Dowsett and Colby, Journal of Chronic Fatigue Syndrome, 1997).
Also new on the Trust's site is the latest issue of 'Vision' at
Here young people with ME and their families can have their poetry, artwork
and writing published, their questions answered and their illness
The Young ME Sufferers Trust
PO Box 4347
Essex CM4 9TE
United Kingdom www.tymestrust.org
A video of the Royal Society of
on 28th April is now at: