Very Good Article on FMS and CFS -Long But Good

Discussion in 'Fibromyalgia Main Forum' started by Empower, Sep 7, 2005.

  1. Empower

    Empower New Member

    Is It All in My Head?

    What you believe about your illness influences how sick you become.
    By Psychology
    More on this in Health & Fitness

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    Two decades ago, Carole Howard was a highly driven academic, simultaneously pursuing a master's degree from Loyola University in Chicago and serving as a college administrator -- until the fateful morning when she got out of bed feeling not quite herself. "I woke up one day in a lot of pain," Howard recalls. "I thought I had the flu."

    If only it were that simple. Her aching muscles and sluggishness kept her in bed for weeks, and never really went away. Howard was eventually diagnosed with fibromyalgia and chronic fatigue syndrome, two devastating chronic ailments that crippled her academic career and landed her on full-time disability. "You can live with this," says Howard, 61, who now serves as president of the Chronic Fatigue Syndrome, Fibromyalgia and Chemical Sensitivities Coalition of Chicago. "But you have to accept doing half of what you used to do. I have a two-hour limit before I need to sit or lie down."

    Beyond accepting her physical limitations, one of Howard's biggest challenges has been dealing with people who doubt that her illness is real. "My family was never supportive," she says. "There were a lot of derogatory comments." Even today, when knowledge about these diseases is much more widespread, Howard still encounters skeptics. Recently, a woman helping her around the house dismissively told her: "You're not sick -- you don't look sick." "I just went ballistic," Howard recalls. "I was so enraged."

    Capping her frustration, Howard cannot be sure to this day why she became ill. But her best guess is that the self-imposed stress of her ambitious lifestyle played a role. "I didn't know what a vacation was," she recalls. "I never stopped. I didn't realize there was a difference between the Energizer Bunny and me."

    Howard's suspicions are confirmed by many researchers, who are coming to believe that psychological factors play a crucial role in perpetuating many physical illnesses, particularly a subset of chronic ailments that defy logic, diagnosis or a cure. It seems that the way you think about your illness can actually affect how sick you get.

    These "multi-symptom illnesses" -- which include chronic fatigue syndrome, fibromyalgia and potentially others such as Gulf War syndrome, irritable bowel syndrome and the condition known as multiple chemical sensitivity -- have provoked intense controversy. Because they have no obvious biological cause, some doctors and researchers dismissed them in the past as hysteria or the "yuppie flu."

    Many patients, in response, became equally determined to prove that their disease was just as real and as biologically legitimate as heart disease or breast cancer. Those who have watched a close friend or family member with one of these syndromes can find themselves wondering: Is this real? Is she making this up? Patients themselves fear the worst: Will I ever get my life back? Will no one believe me? Is it all in my head?

    "The big challenge is credibility," says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a patient advocacy group. "The illness is still not well understood, and when people don't see anything unusual about you, they question whether you're sick or not."

    In recent years, the war between doubters and advocates has waned. The new consensus is that these illnesses are truly mind-body diseases, in which biological and psychological causes and dysfunctions are inseparably intertwined. The mind seems to play a key role in kick-starting and perpetuating illness -- but it's not that sufferers are simply malingerers. Their bodies are sick, and their reaction to the illness often makes it worse.

    "Anybody who has a chronic illness has alterations in biological and psychological mechanisms," says James F. Jones, M.D., a chronic fatigue expert with the U.S. Centers for Disease Control and Prevention. "You really can't separate the brain and the body, because psychology is biology -- everything that takes place in the brain is chemical or electrical. You can't have the one without the other."

    For the estimated 800,000 Americans suffering from chronic fatigue and the 3 to 6 million with fibromyalgia, the symptoms are all too physical -- as debilitating as flu, and as persistent as tuberculosis. The diseases disproportionately affect women: Nearly 90 percent of fibromyalgia patients, and two-thirds of CFS sufferers, are female. Patients diagnosed with chronic fatigue have endured six months of complete exhaustion, plus a cluster of debilitating symptoms: They grow forgetful. Hurt when they swallow. Suffer throbbing headaches. Toss and turn in their sleep. Those with fibromyalgia may also suffer fatigue, but mainly describe inexplicably aching joints and muscles across their entire body.

    But although these diseases are among the more extensively researched of these chronic disorders, patients may still flounder for years searching for an explanation. Symptoms are broad and diffuse, and the diseases have no reliable test, so a diagnosis is usually made by ruling out everything else.

    In the search for the cause, researchers have turned up some significant biological abnormalities among chronic fatigue sufferers: Stress hormones, brain scans and immune system measures often show characteristic differences compared to healthier populations. Researchers haven't given up looking for an underlying infectious cause, since sickness can be misleading -- asthma and ulcers, for example, were only recently understood to be primarily physical diseases. At one point, the Epstein-Barr virus, which infects nearly all adults, was thought to be a culprit in CFS or fibromyalgia. But this early lead, and others, have fizzled.

    Doctors suspect that by continuing to focus on an elusive biological cause, they could be missing out on the other half of the picture -- and the chance to find a solution. They have begun to re-examine the role of severe stress, depression and even personality traits in initiating and fostering disease.

    Some of the evidence is hard to dispute. For example, those suffering from chronic fatigue or fibromyalgia are significantly more likely than healthy people to have experienced depression, anxiety, physical abuse or a life-altering stressful event well before they developed their disease. In one study conducted by Wayne Katon, professor of psychiatry at the University of Washington in Seattle, 90 percent of fibromyalgia patients had a prior psychiatric diagnosis.

    Another study, at the University of Leeds, found that patients who had developed chronic fatigue were nine times more likely to have suffered stressful events and difficulties in the three months before the onset of disease than were healthy subjects. The implication is clear: Unlike other diseases, these disorders are closely connected to psychological distress, whether it takes the shape of a major psychiatric disorder or simply poor coping mechanisms.

    More than Depression
    Still, it's clear that chronic fatigue is not just a bodily manifestation of clinical depression. While those who are depressed often are tired, and those who battle any chronic illness tend to grow depressed, the two are clearly distinct. Clinical depression doesn't usually result in a sore throat or post-exercise fatigue, and antidepressants aren't generally good treatments for CFS. "Depression and fatigue are fundamentally different," says Leonard Jason, a professor of psychology at DePaul University in Chicago. "If you ask a person who is depressed, 'What would you do tomorrow if you were better?' they say, 'I don't know.' Chronic fatigue sufferers will give you a list of 10 things."

    The body's stress response may be crucial to triggering diseases like chronic fatigue. Stress activates the body's hypothalamic-pituitary-adrenal axis, leading to a surge of the hormone cortisol, which suppresses the immune and other bodily systems. If some outside agent such as a viral infection comes along during a period of high stress, the system may overreact or even spiral permanently out of whack.

    "Most patients will tell you they had a history of being under a lot of work-related stress, or struggling with anxiety or depression, and against that backdrop, a second event happened -- a car accident or a viral infection," notes Dedra Buchwald, an internist at the University of Washington's chronic fatigue clinic in Seattle.

    For Laura Hillenbrand, author of the best-selling book Seabiscuit and noted chronic fatigue advocate, long-standing sickness began with a common illness -- and a shock. While a junior in college, she was traveling with friends down a country road late at night when a deer darted in front of the car. Though the driver swerved and avoided the collision, for passenger Hillenbrand, the traumatic experience was followed almost immediately by nausea, fever and chills. That night, she was diagnosed with a nasty bout of food poisoning. It was followed by weeks of extreme lethargy, leaden limbs and weight loss -- symptoms that have never fully abated.

    Did the fright of that evening's near-miss undermine her body, rendering her vulnerable to food poisoning? "I really don't know," muses Hillenbrand, who wrote her best seller largely from her bed. "It is my belief that CFS is an opportunistic disease that preys on bodies that are compromised. It is an interesting coincidence that I began to feel the symptoms just a moment after that experience of extreme stress."

    It's the Reaction That Counts
    Wayne Katon, whose research focuses on depression, anxiety and somatoform disorders, makes the case that stress and anxiety play a primary role. In his view, personality doesn't just create a hospitable environment -- it's an integral part of the diseases. He believes that the initial injury or illness is almost irrelevant. What really matters is the interpretation and emotional reaction. Patients develop what he calls "catastrophic cognitions": beliefs that if they start to get back to their activity, they will damage themselves further.

    According to Katon's clinical observations, patients with chronic fatigue or fibromyalgia tend to be highly driven overachievers unaccustomed to feeling any loss of control. When injured or sickened, those who decide that the pain or illness has overwhelmingly and permanently damaged their bodies come to feel victimized and unable to cope. Learned helplessness sets in, and patients can find themselves perpetually depressed and inactive. "They have trouble getting back to that old lifestyle, and what sets in is depression," Katon suggests. "In our modern society, for people who have driven themselves, fatigue becomes a palatable way out of a difficult existence." Although Katon is well regarded in the field, this perspective is still widely debated, at conferences, in medical journals and even by peers at his own medical center.

    However, some patients do describe their experience in similar terms. "Stress seems to be the killer," Howard admits. "That's what I think happened with me. I was a superachiever and a perfectionist. I was going to make it, no matter what. I didn't anticipate the consequences."

    Fear of further damage and disability may keep patients from trying to get back to an active life. "Whatever caused this impairment is probably not what's keeping it going," Katon says. "What's keeping it going to a large extent are the misbeliefs about getting back to an active lifestyle."

    Indeed, Hillenbrand had come to anticipate disaster when she tried returning to a normal life. "I had learned to expect complete collapses each time I overextended myself," she recalls. "As I began to slide into exhaustion, I would anticipate how I would soon be unable to sit up and speak, and I would become very frightened. The anxiety I experienced as I slid into collapse would feed my exhaustion, and I would become still weaker."

    It's Not Just a Matter of Will
    Hearing talk of "learned helplessness" can be very frustrating for chronic fatigue and fibromyalgia patients, many of whom would like nothing better than to get back to an active life. Accepting that psychology plays a role in these diseases does not mean that patients should just "will" themselves out of illness. The best treatments seem to be highly structured interventions that help patients change the way they think and behave, including cognitive and emotional therapy. For example, graded exercise therapy encourages chronic fatigue sufferers to return to activity at a carefully measured pace, much like physical therapy following hip replacement. Patients are encouraged to try walking a few extra blocks each day, instead of trying to run three miles on a "high-energy" day and risking a relapse.

    More than merely instilling a positive attitude, cognitive-behavioral therapy teaches patients to reframe their expectations about what will happen if they exert themselves. Researchers at Oxford found that 73 percent of CFS patients receiving cognitive behavioral therapy for a year returned to relatively normal physical functioning, compared with 27 percent who had standard medical care or relaxation.

    Those who refuse to accept the value of psychological therapies can get stuck. Some sufferers continue to seek physical proof that something has gone terribly awry, such as a virus, an environmental toxin or a faulty gene. "Patients seem to think if [their disease] is psychiatric, it makes them less legitimate, it makes their problems less real," says CFS researcher Arthur Hartz, a professor of family medicine at the University of Iowa. "But nobody with any sense blames this on the patients."

    Patients with chronic fatigue who attribute their illness solely to external causes, such as a virus, seem to stay sicker than those who acknowledge the possible interplay of psychological factors. "Your beliefs about the illness are important," says Buchwald. "If you're wedded to an idea that your illness has a single specific cause, your chances of getting better are diminished, because you're not addressing parts of the illness that could be prolonging it." Instead, she suggests, patients should focus on actively following treatment advice and avoiding social isolation.

    Because beliefs have such a powerful impact on well-being, the techniques that people use to cope with other diseases can backfire in the case of chronic fatigue. Ironically, patient advocacy groups may be more harmful than helpful, studies have suggested, possibly by reinforcing a sense of victimization or by giving misguided advice, such as actively discouraging all exercise.

    "The support groups are very anti-psychological," says Katon. "A lot of times they act to inadvertently reinforce illness beliefs [such as fear of relapse or exhaustion] that are potentially harmful to patients." Those in support groups often report more severe illness, and say that they feel worse since joining the group than do dropouts. Critics dispute these findings, saying that dropouts leave because they feel better. However, research suggests that members are just as likely to drop out because they have grown too sick to attend as because they have improved.

    Pat Fero, executive director of the Wisconsin chapter of CFIDS, remains skeptical of the value of psychologically based therapies. She points out that a good attitude alone isn't going to make symptoms vanish, and she doubts that cognitive therapy would improve her chronic fatigue. "If you're feeling negative about everything around you, yes, you're going to feel worse," she says. "But the opposite is not necessarily true: If you improve the state of your mind, it doesn't mean you'll cure yourself."

    Hillenbrand, however, credits cognitive therapy with showing her how to reshape her expectations in ways that have made it easier to cope. "I have learned how to replace those fearful thoughts with more positive ones -- I don't have to collapse'; 'This will soon pass,' " she says. "As a result, while I still experience those collapses, they are often less severe and briefer than they once were. I have been able to live a better, happier life."

    Melissa Schorr is a freelance health writer based in Seattle. She has written for Working Mother, WebMD and Reuters Health.

    Read more about the mind body connection.

  2. bioman85

    bioman85 New Member

    If by good you mean presenting horribly inaccurate views, then yes, it's a great article.
  3. CFS~FMS

    CFS~FMS New Member

    I posted a message on this board, also, (the first I've ever posted) recommending the same article on today. I wouldn't have if I'd seen your post before I did.

    I got one reply, you can see I can see the reply to your post.

    I thought the article was helpful to anyone suffering from Chronic Fatigue and/or Fibromyalgia. I only check this board for symptoms that I get and I don't want to visit the doctor about. If you type in the symptom, there will usually be a few messages posted regarding it, so I can see its another ailment to deal with when you've got fibromyalgia, then get on with what I've got to do. I would think sufferers of these health conditions would appreciate any publicity, we have to deal with people who don't believe the illnesses are real, so any help from the press should be appreciated.
  4. elsa

    elsa New Member

    Thanks for taking the time to post this article. It
    pops up from time to time .... I don't think I'm ever going to be happy about it.

    I don't doubt for a second that many people with FM had a past trauma act as a trigger for the illness. A trigger however, does not mean a cause.

    And then there is me ... who, by the grace of God, have led a very blessed and safe life with no childhood trauma, no abuse, etc. I believe these psycs. would have a very difficult time explaining me away.

    I get frustrated when the validity of our illnesses are so cavalierly dismissed by a profession that operates
    on theory. ( This is not a blanket bash of psyc... they
    help greatly in alot of areas.)

    Sometimes I wonder if this is not an ego driven stance.
    No doubt, it is a hugh money-maker for them in the UK.

    I think it is sad for us that there is still a segment
    that refuses to see what the almost daily new research
    results are coming up with .... and it's not "All in our heads".

    O.K. .... off my box now ...LOL Didn't hurt anyone did I? I hope not ....


  5. Empower

    Empower New Member

    All that I can contribute, is that my CFS started after a series of extremely stressful events

    Also, I always was a very healthy person, but a definite type A personality

    I have noticed that when I am depressed or stressed, my CFS symptoms are worse

    When I do something for myself that is fun or relaxing, I always feel a little better, even it is something as simple as a manicure.

    So I think there is some validity to the article. I KNOW mine started because of a very stressful life, and then I had surgery which just "Broke the camels back"
  6. bioman85

    bioman85 New Member

    That's great that you feel better when you do something you enjoy - who among us couldn't say that? The problem is the article implies that we can be cured by just changing our frame of mind. Honestly, I think people with CFS and FM are the strongest people in the world - to be able to put up with life's normal challenges in addition to the extra ones we must face. We may not always win the battles, but we do not, and we will never, surrender.
  7. wildwoodlane

    wildwoodlane Member

    article. I have had a worsening of symptoms the last few months after a trauma, and now I feel I am losing ground. I can relate to a fear of collapse and relapse upon extra activity and exertion -- and I understand that this is a valid response, according to the article. I just had my regular doc, a competent internist, tell me he thinks some of my problems are psychosomatic and that I would benefit from seeing a psychiatrist! As the saying goes, "How does that make you feel?" Not too good, especially since I am not affluent enough to pay $100 per hour to a specialist. So where does that leave me?

    Empower, I appreciate your posting this news release; it gave me some different angles to consider. Thanks and hope you are having a good day!

    Garland (wildwoodlane)
  8. elsa

    elsa New Member

    Well said ..., excellently written. Thank you for coming up with the words.

    Empower ... I am happy for you in that you can identify what promotes good health for you and what triggers bad days. That gives you a level of control over your illness that is priceless. I will never agree to
    "forced helplessness" . I work very high physical days and still show horses. However, I don't feel as good as I want to and I'm not doing as many days of these activities as I'd like.

    I still believe I would stump those who believe in this theory. Too happy of a life, and believe it or not, fairly happy now. I never went through the anguish of bad docs and my family is a god send. I have no anger issues.

    I probably do more the the psyc.experts physically
    ... yet, I still have CFS/FM. How would they explain me?

  9. Shannonsparkles

    Shannonsparkles New Member

    I don't think that we are 'victims'. I don't see myself that way, anyway. We are STRONG people who hold together through things that normals can't immagine. We're resourceful and proactive. We never give up in learning more to help ourselves. We're smart and brave. We know ourselves. We work with our limits. And inside of all that's going on, we still keep on reaching out to help and comfort others. We are heroes, no other word for it.

  10. rileyearl

    rileyearl New Member

    I don't think so. It's probably more true that 90% of us are intuitive and sensitive, which really confuses people who are not. Those two attributes are immeasurable--just like FMS/CFS.

    This article is mainstream dismissal of FMS/CFS. It's a cheap way out of an illness with no solid medical treatment or research. It's one way to paint us as malingerers who cheat big business out of benefits.

    Normally I wouldn't wish the kind of pain I have on anyone, but it's tempting in this case.

    I'm not sure if I'm more angry or more sad.

  11. elsa

    elsa New Member

    I am not depressed. I don't go to therapy and I don't take anti dapressants( rx or natural) of any kind.

    I laugh everyday and I don't sit down a cry over these illnesses. They are not going to kill me. The illness immediately preceeding my CFS/FM darn near did. Maybe that's why I don't have anger or dark issues w/ these illnesses.

    Difficult to deal with? Sure... changed my life? You bet... BUT it is NOT going to KILL me ... I rejoice over that fact. It's like a chess match against a very smart
    opponent who has several tactics in their arsenal. They change those tactics daily. If I want to win, I need to be educated with great tactics of my own to counter and win.

    I can make a very strong arguement backed up with research on how I came down with CFS and no part of it
    is psychological.

    Seven years ago in hospital w/ a very life threatening illness. Had an extremely lowered immune system that made me susceptible to pathogens. Treated with interferon that has a significant statistical follow up of patients going on to develop CFS. I was given two blood transfusions which also has a % of CFS outcomes, all be it a small one.
    I know for a fact that major blood banks do not go to the expense of testing for the very viruses that most of us have reactivated. ( I work for the Red Cross and have
    researched this.) Top things off, had one more round of interferon for good measure.

    My illness disappeared. I thank God above for being here and the brillant doctors who worked on me. However, I never had a day since then symptom free. One of my treating physicians from 7 years ago agrees with how CFS came about for me. His words," Most probably and very logical explaination". There is a clearly traceble timeline from pt.A to pt.B ( which is where I am now )in how I developed CFS.

    So, having said all that, even for the sake of arguement, I cannot come up with one reason why my CFS/FM is anyway related to a psychosomatic basis in cause.
    I still participate in all 4 "cornerstones" that are necessary for me to have in my life in order to be happy
    .... I just do as much of them as I would like.

    I have remarked before that I don't doubt that many have suffered horrible abuse in their lifetime. They also happen to have CFS. Someone here pointed out a while back that abuse is and has been a rampant widespread plague on humanity. You could take a room full of CPA's a have a statistically significant number of them who have suffered abuse in their life time. It is a commentary on how prevalent abuse is ... and how it cannot be pointed to the cause of CFS or to someone becoming a CPA.

    Can having suffered abuse make CFS worse? Absolutely.
    Is therapy a good tool for some to accept and deal with having CFS? Absolutely. Is it the CAUSE of CFS ... no.

    I will not get over the "learned helplessness" explaination in this article. I've got to ask ... do I sound helpless to anyone? Do I sound depressed or maladjusted to the disgnosis of CFS? I have to repeat my previous statement ...The psychosomatic theorists wouldn't have a clue as to what to do with me. I don't fit their tidy mold. I imagine they'd say either I am in a bad case of denial or I simply have been missed diagnosed.

    I appreciate the questions posed. It was thought provoking. I hope you look over my case and see the flaws presented as fact in this article. CFS is not a psychosomatic illness. How do they explain the genetic markers found in CFS patients recently discovered by a team in Scotland?

  12. elsa

    elsa New Member

  13. nanswajo

    nanswajo New Member


    I am glad you wrote them. You are very articulate and I hope they will consider printing your letter. I'm sure it is very well written. I agree with you totally.

    I was very confused when I read this article when it first came out. It reminds me of the little story about the blind men who touch a part of an elephant and each come up with very different and incomplete, thus inaccurate, descriptions of what an elephant is.


    [This Message was Edited on 09/08/2005]