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    Eine weitere Suchmöglichkeit besteht darin, z.B. bei das Suchwort einzugeben und dann nach einem Leerzeichen den Zusatz

    Sie erhalten dann alle Seiten auf, auf denen der gesuchte Begriff vorkommt.


    Interview Jason:

    The New York Times
    Printer Friendly Format Sponsored By

    May 30, 2008
    Expert Q & A

    Learning Firsthand About Chronic Fatigue Syndrome

    Leonard Jason is a professor of psychology at DePaul University in Chicago and the director of the university’s Center for Community Research. He is on the Chronic Fatigue Syndrome Advisory Committee to the federal Department of Health and Human Services and is a board member of the International Association for CFS/ME, an advocacy group.

    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 some antidepressants.”

    With heart disease or cancer 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 years?

    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 bronchitis or emphysema “chronic cough syndrome,” you’d probably have very little respect for those people, but a name that’s more medical sounding changes people’s perceptions.

    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 form of 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 don’t know.”

    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 illness matter?

    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 100 percent.

    Publish date: 5/30/2008



    Flyer Invest in ME - über die Vortragenden

    Jonathan Kerr - neue Studie, Zusammenfassung

    Berichte aus breakthrough magazine or/and ; brain (bigger essay) ; stiffness (bigger essay)




    Maintower, 3.4.08;9944152;/fileinfo.html


    The Press Association

    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

    Copyright © 2008 The Press Association. All rights


    Page last updated at 23:02 GMT, Monday, 5 May
    2008 00:02

    '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.

    'Biologically meaningful'

    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

      BBC © MMVIII



    Dr Derek Enlander interviewed on UTV Life

    Belfast (Northeren Ireland) May 6th 2008


    Innovations report


    US and British Researchers highlight
    distinct subtypes of myalgic encephalomyelitis

    US Researcher Announces Successful Antiviral
    Treatment For A Subset Of ME/CFS Patients

    Researchers have identified distinct subtypes of
    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.

    Details of the CPD accredited conference may be
    found at –

    Kathleen McCall




    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

    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
    Radio Two.

    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 for
    more information. A DVD of the conference
    will be availble.        

    Please repost this message to as many as you

    Yours truly,
    The board of vzw MEAB


    ME Association launch new survey to coincide with ME
    Awareness Day

    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.

    * If you have ME, or care for someone with ME, please try and fill
    in the questionnaire. It is available at by clicking on this link.
    <> A
    paper version will be available later from the ME Association.



    MAY 2008

    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

    Jane Colby
    Executive Director
    The Young ME Sufferers Trust
    PO Box 4347
    Stock Ingatestone
    Essex CM4 9TE
    United Kingdom



    A video of the Royal Society of
    Medicine Protest-Demonstration
    on 28th April is now at: