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How helpful to us are Dr Fred Friedberg's opinions?

Discussion in 'Action Alerts and Advocacy' started by Dx Revision Watch, Nov 16, 2009.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Note this appears to have been published in an Abu Dhabi publication. (The commenter, Susan Wenger, is one half of the Tuscan duo, Cinder Bridge.)

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    http://www.thenational.ae/apps/pbcs.dll/article?AID=/20091116/LIFE/711159972/1196

    Persistent debate
    Dan Roberts


    Last Updated: November 15. 2009 4:01PM UAE / November 15. 2009 12:01PM GMT

    [Image]

    Sufferers of chronic fatigue syndrome experience severe muscle pain, fluctuating body temperatures and, of course, crippling tiredness. Esbin-Anderson / Grapheast

    New research suggests that most cases of chronic fatigue syndrome may be linked to a virus known as XMRV. The study, by Dr Judy Mikovits and her colleagues at the Whittemore Peterson Institute in Nevada, found that XMRV was present in two-thirds of patients suffering from chronic fatigue syndrome (also known as ME, or myalgic encephalomyelitis). This news received a rapturous welcome from the millions of people across the globe suffering from a syndrome that continues to provoke fierce controversy among medical experts. Many refuse to acknowledge it even exists, dismissing it and similar illnesses as yuppie flu.

    Why the controversy? Because chronic fatigue syndrome, along with closely related ailments such as fibromyalgia and irritable bowel syndrome, is a multi-symptom illness with no obvious biological cause. Unlike lung cancer, say, or coronary heart disease, physicians cannot pinpoint a single causative factor, so many insist that the problems are all in a patients mind. For example, a recent article in the British Journal of General Practitioners, speaking on behalf of the nations doctors, described CFS thus: The prevailing view in UK primary care has been that somatisation of mental illness is the basic problem.

    In other words, chronic fatigue syndrome is a psychiatric disorder, not a physical one, and any symptoms are purely psychosomatic. This provokes a furious response in those whose daily lives are made a misery by symptoms such as severe muscle pain, wildly fluctuating body temperature, digestive problems, migraines, nausea and, of course, severe fatigue. And this debate is far from new. In fact, in the 19th century, Alfred Nobel, who discovered dynamite and founded the Nobel prizes, complained: I am more seriously ill than my doctors think.

    Nobel is now thought to have suffered from fibromyalgia. Like chronic fatigue syndrome, this condition is associated with fatigue and non-restorative sleep, but also tenderness at 11 or more of 18 designated trigger points, where ligaments, tendons and muscles attach to the bone. There is no known biological cause, although fibromyalgia may occur after viral infections, exposure to toxins or emotional or physical trauma (whiplash suffered in a car accident is thought to be a common trigger).

    But if Nobel had sought treatment for his symptoms at the time, Sigmund Freud would have diagnosed neurasthenia and treated him with psychoanalysis, while the world-famous hypnotist Jean-Martin Charcot would have deemed it hypochondria, requiring a course of hypnotism. Fast-forward 100 years or so and symptoms such as Nobels would be dismissed as yuppie flu, a term that angers Fred Friedberg, an American clinical psychologist and the president of the International Association for Chronic Fatigue Syndrome. Yuppie flu and other derogatory terms are stigmatising to patients, he insists. Also, the idea that it is psychosomatic implies that it is all in the mind, rather than a real illness. This is not useful. CFS probably has multiple causation, including genetic, immune and perhaps viral factors, as well as an over-stressed lifestyle both biomedical and behavioural factors are involved.

    Friedberg, the author of Fibromyalgia and Chronic Fatigue Syndrome: Seven Proven Steps to Less Pain and More Energy, is also keen to emphasise how disruptive and unpleasant these conditions can be. CFS is a debilitating illness characterised by at least six months of persistent abnormal fatigue that is not alleviated by rest or sleep, he says. It also includes several flu-like symptoms such as muscle and joint pain, as well as memory and concentration difficulties. If you can imagine what it would be like to have persistent flu symptoms and all the problems they create in getting through the day, then you have an idea what CFS is like.

    Adding to these patients misery, says Friedberg, is the fact that in many cases their physicians remain sceptical and unhelpful, because there is neither a biological cause nor a simple cure. Happily for fibromyalgia sufferers, their condition is at least recognised by rheumatologists as a chronic, widespread pain syndrome. In fact, it is the second most common diagnosis in rheumatology and may affect up to six million people in the US alone.

    The fact that many physicians remain sceptical is in part due to the mental illness often associated with fibromyalgia and other multi-symptom illnesses. Those suffering from chronic fatigue or fibromyalgia are significantly more likely than healthy people to have experienced depression, anxiety, physical abuse or a life-threatening stressful event before the illness developed. In one study by a team from the University of Washington in Seattle, 90 per cent of fibromyalgia patients had a prior psychiatric diagnosis. Another study, at the University of Leeds, found that patients with chronic fatigue syndrome were nine times more likely to have suffered stressful events and difficulties in the three months before the onset of illness than the healthy subjects. So there is clearly a component of psychological distress, whether that involves a major psychiatric disorder or poor coping mechanisms for dealing with severe stress.

    The most common complaint on our helplines and forums is that some doctors say its just a psychiatric problem, says Martin Westby, the director of the support group UK Fibromyalgia. But I would argue that if youre in constant pain, having difficulty obtaining a medical diagnosis from your doctor or even being believed by your own family because there are no outward physical signs, who wouldnt get depressed?

    Cognitive behavioural therapy (CBT) is also deemed helpful for fibromyalgia. Westby explains: CBT is prescribed by more enlightened doctors and does seem to help in some cases, because it helps people manage their thinking, he says.

    This is a key point: critics who argue that multi-symptom illnesses are psychosomatic are missing the point. The connection between mind and body is something we are only beginning to understand, but experts increasingly recognise the symbiotic relationship between them. For example, prolonged stress is linked with a host of physical ailments including high blood pressure, coronary heart disease, stroke and cancer. When we think worried or stressful thoughts, the body responds by secreting hormones such as adrenaline and cortisol these hormones, in turn, affect the way our mind works, creating negative thought spirals, and so it goes on.

    Anyone who has a chronic illness has alterations in biological and psychological mechanisms, says Dr James F Jones, a chronic fatigue expert with the US Centers for Disease Control and Prevention. You cant really separate the brain and the body, because psychology is biology everything that takes place in the brain is chemical or electrical. You cant have one without the other.

    This view is echoed by Westby. The psychosocial element to fibromyalgia is one reason CBT works well, he says, because if you can heal the mind then you will heal the body too.

    That is backed up by research from Oxford University, which found that 73 per cent of chronic fatigue syndrome patients receiving CBT for a year returned to relatively normal physical functioning, compared with 27 per cent who only received standard care or rest.

    A dualistic, mind-body solution is part of the multidisciplinary treatment that seems to work best, adds Westby. There is no magic solution, sadly. Sufferers use a range of things to help with their condition, such as a low-dose antidepressant to help with sleeping, low-impact exercise, multivitamins for the immune system and gingko beloba to clear the mind and help with the brain fog many people complain of, he says.

    This multidisciplinary approach is also being trialled for those with chronic fatigue. At Kings College, London, researchers are currently conducting a five-year trial using four treatments: CBT, exercise therapy, adaptive pacing therapy (which teaches patients to carefully match activity levels to the amount of energy available) and specialist medical care. And, as researchers look into the role that the XMRV virus plays in chronic fatigue syndrome whether it is a causative factor or merely takes hold because of a weak immune system attention increasingly focuses on the bodys stress response. This is thought to play a crucial role in illnesses such as chronic fatigue, because stress activates the bodys hypothalmic-pituitary-adrenal axis, leading to a surge of the stress hormone cortisol, which suppresses the immune and other bodily systems. If an outside agent such as a viral infection attacks during a period of high stress, the system may overreact or even spiral permanently out of control.

    People with CFS are over-worked and over-stressed, says Friedberg. They also take little time for themselves and do not value low-effort leisure time. In other words, their lives are out of balance. So I view stress as one factor in developing the illness; biomedical factors are also involved.

    It seems clear that the debate about these multi-symptom illnesses is set to rumble on. That offers little comfort for those whose lives are blighted by constant pain and dragging fatigue. But perhaps one day soon researchers will discover exactly what causes them and which treatments work best, and the murky world of psychosomatic illness will become clear.



    Comments
    Added: 11/16/09 12:50:00 AM

    Myalgic encephalomyelitis (aka "chronic fatigue syndrome") has never been a psychosomatic illness. Does anyone still think it is, with the discovery that most sufferers are infected with a retrovirus?

    Furthermore, cognitive behavior therapy and graded exercise therapy are not effective treatments for myalgic encephalomyelitis. The researchers who studied these treatments used a case definition for ME that was so broad, it included many people who didn't have the disease at all -- instead they suffered from other issues, like depression.

    People with real ME suffer from post-exertional malaise. That is, they get worse when they exert themselves, and they don't recover from getting worse. As a result, graded exercise therapy actually harms people with real ME.

    So where do CBT/GET researchers get their positive results? The real ME patients tend to drop out of the studies (because the treatment makes them sicker), and then they are excluded from the results.

    Susan Wenger, Tucson
     

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