Great article on CFS

Discussion in 'Fibromyalgia Main Forum' started by winsomme, Feb 3, 2007.

  1. winsomme

    winsomme New Member

    i know that many people in addition to suffering from this awful disease also have trouble dealing with people in their lives who think we're faking, lazy, whatever else....

    here is a top notch article which not only explains how serious it is, but also looks towards the future about hopefully one day regaining our health.

    http://www.timesonline.co.uk/article/0,,8123-2556261,00.html

    if you copy the link and paste into your search field, you should get there.

    let me know if you jave trouble.

    thanks
    bill
  2. ulala

    ulala New Member

    CFS is certainly starting to get some publicity. THanks for posting.

    Maybe you could copy and paste the article to make it easier for others to read?
  3. winsomme

    winsomme New Member

    Fatigue syndrome is not all in the mind
    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.



    [This Message was Edited on 02/03/2007]
  4. winsomme

    winsomme New Member

    During a three-year pilot trial the researchers revealed that 21 of 25 ME patients with symptoms related to the herpes virus responded to Valcyte with significant improvement. Those who responded to the drug had developed ME after an initial flu-like illness, while the non-responders had suffered no initial flu.



    At St George’s Medical School, London, Dr Jonathan Kerr is planning trials on the well-established drug interferon beta to see if it can restore an imbalance of genes in CFS patients. “We’ve found that the genes in patients’ white blood cells — a key part of the immune system — are switched on and off in an abnormal fashion,” he says. “The drug boosts the immune system by enhancing the activity of natural killer cells, which fight viruses. Since viruses are believed to play a role in triggering CFS in many people, beta interferon might clear the infection and help them to shake it off.”

    Despite the peak of scientific interest in CFS, it remains a subject of much debate. Only last November, an allparty group of British MPs, chaired by Dr Ian Gibson, who was formerly chair of the Science and Technology Select Committee, launched an attack on the medical establishment for clinging to its belief that CFS is “all in the mind”. It claimed that a bias against research into its physical cause exists and criticised the Medical Research Council for investigating only psychological causes of the illness. Indeed, many studies persist in linking CFS to psychological triggers. A Miami University study in the Archives of General Psychiatry recently cited childhood trauma as a risk factor after assessments of 43 people with the syndrome found that they reported a much higher incidence of trauma, depression and anxiety when they were children. Those who recalled a troubled youth were said to be eight times more at risk of getting CFS than their peers.

    Klimas says that even its name belittles the extent to which it debilitates patients’ lives. “If it were called chronic neuroinflammatory disease, then people would understand it,” she says. “Until today nobody’s been willing to change the name, but now there’s proof that inflammation occurs in the brain and there’s evidence that patients with this illness experience a level of disability that’s equal to that of patients with late-stage Aids, patients undergoing chemotherapy, or patients with multiple sclerosis.”

    What experts are most keen to change is the public perception that CFS affects those with nothing else to worry about.

    “This is not an illness that people can imagine they have. It’s not psychological,” says Komaroff. “That debate, which has raged for more than 20 years, should be over now.”

    The Association of Young People with ME (AYME) has produced a DVD for sufferers, available from its website below.

    www.ayme.org.uk
    www.afme.org.uk
    www.meassociation.org.uk
  5. NashCag

    NashCag New Member

    Thanks for posting this. I appreciate the time it took for you to do so.

    Have a goood evening!
  6. karinaxx

    karinaxx New Member

    very good article, way to go.
    that is the first one i see which is going into details and is correct.

    thanks karina
  7. KMD90603

    KMD90603 New Member

    oh my gosh, what a wonderful article! It goes into such great depth about CFS/ME, and the author really goes out of their way to point out that CFS/ME is a true, physical, debilitating disease. Now if only every single newspaper/magazine/news station could print/broadcast this article, maybe the rest of the world would catch on. 2 thumbs up for this article!

    Kim