This kind of thing makes me sick, it makes me afraid of our “experts” and it’s all too typical.  Not only in terms of denial and avoidance of responsibility, but arrogance, dismissal of people in dire need, insensitivity, stigmatization, marginalization, devaluation….I too thought they were full of crap-lazy, avoidant, whiney-until my symptoms started getting worse and worse…

Op-Ed ContributorA Case of Chronic Denial Sign in to Recommend

by HILLARY JOHNSON

Published: October 20, 2009

EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?

Health Guide: Chronic Fatigue XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).

That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.

The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”

When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.

An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”

Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.

Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.

Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS: “My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”

Congress has appropriated money for research on chronic fatigue syndrome, too, though in far smaller amounts, but the C.D.C. has seemed unwilling to spend it productively. A decade ago, investigations by the inspector general for the Department of Health and Human Services and what was then called the General Accounting Office revealed that for years government scientists had been funneling millions meant for research on this disease into other pet projects.

As public health officials focused on psychiatric explanations, the virus apparently spread widely. In the new study, active XMRV infections were found in 3.7 percent of the healthy controls tested. Roughly the same degree of infection in healthy people has been found in the prostate research. If this is representative of the United States as a whole, then as many as 10 million Americans may carry the retrovirus.

It is estimated that more than a million Americans are seriously ill with the disease. (Not everyone infected with XMRV will necessarily get chronic fatigue syndrome — in the same way that not all of the 1.1 million Americans infected with H.I.V. will get AIDS.)

Hints that a retroviral infection might play a role in chronic fatigue syndrome have been present from the beginning. In 1991, Dr. Elaine DeFreitas, a virologist at the Wistar Institute in Philadelphia, found retroviral DNA in 80 percent of 30 chronic fatigue patients. The C.D.C. went so far as to try to replicate her effort, but refused to follow her exacting methods for finding the virus. In addition, the centers’ blood samples became contaminated, and some people at the agency said that administrators ended the research prematurely. Rather than admit any such failure, the C.D.C. publicly criticized Dr. DeFreitas’s findings.

That episode had a chilling effect on other researchers in the field, and the search for the cause was largely abandoned for 20 years.

Now, Judy Mikovits, the retrovirus expert at the Whittemore Peterson Institute, in Reno, Nev., who led the recent study, has revisited the cold case. Not surprisingly, the institute is private, created by the parents of a woman who suffers from chronic fatigue syndrome. But Dr. Mikovits collaborated with scientists at the National Cancer Institute and the Cleveland Clinic.

When she began her work on this disease in 2006, Dr. Mikovits, a 22-year veteran of the National Cancer Institute, knew little about chronic fatigue syndrome. But she was intrigued that an unusually high number of patients being followed by a Nevada doctor were suffering rare lymphomas and leukemias; at least one had died. And she was also impressed that the doctor, Dan Peterson, had built an extraordinary repository of more than 8,000 chronic fatigue syndrome tissue samples going back as far as 1984.

“My hypothesis was, ‘This is a retrovirus,’ and I was going to use that repository to find it,” Dr. Mikovits told me.

What she found was live, or replicating, XMRV in both frozen and fresh blood and plasma, as well as saliva. She has found the virus in samples going back to 1984 and in nearly all the patients who developed cancer. She expects the positivity rate will be close to 100 percent in the disease.

“It’s amazing to me that anyone could look at these patients and not see that this is an infectious disease that has ruined lives,” Dr. Mikovits said. She has also given the disease a properly scientific new name: X-associated neuroimmune disease.

For patients who have been abandoned to quackish theories and harsh ideologies about their illness for 25 years, the dismantling of “chronic fatigue syndrome” can’t come soon enough.

Dysthymia and cyclothymia: historical

origins and contemporary development

by

Brieger P, Marneros A

Psychiatric Hospital,

Martin Luther University,

Halle-Wittenberg, Germany.

peter.brieger@medizin.uni-halle.de

J Affect Disord 1997 Sep; 45(3):117-26

ABSTRACT

The aim of this article is to review and put in their historical context today’s data, methodologies and concepts concerning subaffective disorders. The historic roots of dysthymic and cyclothymic disorders–part of the subaffective spectrum–are essentially Greek, but the first use of the word ‘dysthymia’ in psychiatry was by C.F. Flemming in 1844. E. Hecker introduced the term ‘cyclothymia’ in 1877. K.L. Kahlbaum (1882) further developed the concepts of hyperthymia, cyclothymia and dysthymia–with possible subthreshold symptomatology–in 1882. After Kraepelin’s rubric of ‘manic-depressive insanity’, the term ‘dysthymia’ was widely forgotten, and ‘cyclothymia’ became ill defined. Nowadays the latter term is used in three, partially contradictory, senses: (1) a synonym for bipolar disorder (K. Schneider), (2) a temperament (E. Kretschmer) and (3) a subaffective disorder (DSM-IV, ICD-10). A renaissance of subaffective disorders began with the development of DSM-III. Therapeutically important research has focused on dysthymic disorder and its relationship to major depressive disorder, while cyclothymic disorder is relatively neglected; nonetheless, operationalized as a subaffective dimension or temperament, cyclothymia appears to be a likely precursor or ingredient of the construct of bipolar II disorder.

via Dysthymia.

I made up stories, so I could feel safe. To my head, I said, “I am just like my father and he knows it. I am tough and mean and I could hurt someone. I am just like my father and he knows it. He knows if he hurts me I will do something just as bad to him. Therefore he respects me and is careful around me. My father likes me because I am just like him. I am safe. My father treats me better than the other people in the house because I am just like him. He is a little bit afraid of me and I like that.” Perhaps not in those exact words, but certainly in those exact thoughts, I tried to make myself feel safe. Of course that didn’t make everything all better. When I got a haircut he said I looked so bad, I couldn’t go any place with him anymore. That is one of the two or three most painful things anyone has ever said to me. I was nervous and I stuttered on a regular basis. Dad teased me about it on a regular basis.

Dad was in a tough spot, seven kids to take care of, money problems, time lost drinking, painful hangovers, and fights with mom over drinking, money, lost time and painful hangovers. No doubt, he also acquired some traumatic brain injury from the dramatic single vehicle ‘accidents ‘he had, totaling two pickup trucks. He had a big scar that went all the way up his forehead and into his hairline and another one from his lip down his chin.

When I was a kid I could see the black cloud over my father’s head. At the time I didn’t know that was depression, but I did know that was when he was most abusive. I understand dad felt bad, most of the time. He couldn’t get away from us, so he tried to make us get away from him. I think I was particularly sensitive. I decided early, by eight years old, I would not let what he said hurt me anymore. The best way to do that seemed to remain neutral to all commentary from him. If he said I looked bad it had no meaning . If he said I looked good it had no meaning. If he liked my report card it had no meaning. If didn’t like my report card it wouldn’t have had any meaning. And that is how I consciously started shutting down my emotions. I started being able to make everything into nothing. It is much easier to turn them off than it is to turn them back on.
Has anyone had a similar experience? How did you deal with it?

I said to my sister Mary “do you think it’s possible for someone to have been depressed for so long they don’t know the difference, they can’t recall ever having experienced anything else, if in fact they ever have?”  Mary has been depressed for so long as I can remember, and I’m older than she is.  She has a dysthymic disorder, with frequent drops into major depressive episodes.  She has basically been wandering around the country lost, for the past 30 years, and continues to wander.  I don’t think I’ve ever seen her happy, but that may reflect my filtering of experience.  Some families have the most likely to succeed person.  We have the most likely to commit suicide person.  I am surprised she is still with us.  She rejects all concrete offers of help. I feel pain in my heart when I think about her.

Dysthymic Disorder: eMedicine Psychiatry.

Major depressive disorder, dysthymia, double depression, and some apparently transient dysphorias may all be manifestations of the same disease process. These varieties of depressive mood states, while distinct diagnostic entities, share similar symptoms and respond to similar pharmacologic and psychotherapeutic approaches.^2,3

Although dysthymia was traditionally considered less severe than major depression, the consequences of dysthymia are increasingly recognized as grave and include severe functional impairment, increased morbidity from physical disease, and increased risk of suicide.

Of note, an estimated 75% of people with dysthymia meet criteria for at least 1 major depressive episode, referred to as double depression.⁴ Those with dysthymia who have depressive episodes tend to have longer periods of depression and spend less time fully recovered.⁵  In a 10-year follow-up study of people with dysthymia, 75% experienced some (at least 2 m) period of recovery from major depression; the mean time to recovery was 52 months from study entry. In this study, most (70%) of those who recovered experienced a relapse into another episode of depression, most commonly in the 3 years following recovery.⁶

Age

Most often, patients with dysthymia recall unexplained unhappiness in preadolescent childhood. Whether DSM-IV-TR adequately addresses dysthymia in children and adolescents is a matter of some controversy.¹⁰