Wednesday, October 24, 2012

"One Diagnosis - Several Fatigue Diseases"

Via the maillist (emphasis mine, and I corrected a few sentences that seem to be roughly translated):
A diagnosis - several diseases Fatigue.

Prejudice among many in the medical profession scares away most people who are interested in researching the ME's biological basis.

Lars Th. Narvestad- earlier Ass. Director of Hydro, now bedridden patient Published: 10.okt. 2012

Fatigue comes in many shapes and forms, and is one of the most common symptoms associated with the disease. It is associated with a variety of physical and mental disorders. Because it is so common and associated with so many different diseases, fatigue isolated symptom, not suitable as a basis for a medical diagnosis.

In spite of this it is prevailing practice in health-Norway that patients with some form of fatigue lasting more than four months (plus one additional symptom of a list of ten) are diagnosed with Chronic Fatigue Syndrome (Chronic Fatigue Syndrome - CFS), so while other known disease can not be detected with blood tests or other objective tests (NICE criteria).

One need not be a doctor to understand that such a diagnosis, which more or less exclusively based on the symptom of fatigue, will accommodate several different diseases and conditions.

One of the populations that have ended up in this bag diagnosis, patients with a distinct neuro-immune disease that historically only had the name Myalgic Encephamyelitis (ME). Under unfavorable circumstances, the term CFS introduced in the mid 1980's and is now used CFS and ME interchangeably when patients with this diagnosis should be described (CFS / ME), although prevalence studies show that there may be as few as one in five patients actually ME using broad diagnostic criteria for CFS.

Different patients - different forecasts

Mixing of disease descriptions with different patient groups has created great confusion and skepticism to these patients in the medical community and the public. Who what's wrong, and is it really any of those patients who have a severe physical illness? The impression is reinforced by the health authorities' experts argue that most with this diagnosis are cured, and some patients are presented in the media and declares himself fully with various forms of alternative therapy.

This picture is in stark contrast to the clinical experience of physicians who follow ME patients over time doing it. One of them, Professor of Medicine Anthony Komaroff of Harvard Medical School, who has followed over 400 patients over 25 years, says that very few of his patients recover. Almost all [live with the] disease [for] the rest of [their lives], often with a gradual deterioration. Many are very crippled, the sickest in an almost vegetative state.

Questionable Research

This experience, and all the studies that point to biological causes of disease, have been overlooked by health authorities with regard to the research conducted by a group of British psychiatrists and their allies. These researchers argue that their study provides evidence that cognitive behavior therapy (CBT) and graded exercise (GET) is a safe and curative treatment for patients with this diagnosis, despite the fact that research shows that the vast majority of ME patients whatsoever not noticed any effect of this kind of treatment. Then the seriously ill patients, who are worse by minimal effort, not included.

Weak results and strong criticism of criteria that include different patient groups, has not stopped these researchers from getting a steady stream of studies with the same topic for the past 20 years. The need to repeat itself, coupled with the constant attack from all studies that indicate biological causes of ME, memories suspicious about the research and propaganda tobacco industry sponsored to inactivate, dilute and disguise the damage to health caused by smoking.

Unexplained illness

Unfortunately, one of these methods succeeds in spreading a perception in the medical community that ME is a psychosomatic disorder, and research on MES biological basis and reason has as a consequence been virtually eradicated from public budgets for decades.

It is therefore no coincidence that […] ME is still an unexplained illness. If the biopsychosocial school [has their way, then ME] remains mysterious. Then they periodically go on the podium and continue their guesses, and theorizing about ME. For patients and relatives whose lives are ruined by this disease, it is a sickening thought. However, there is evidence to suggest that it might be the idea.

Over Diagnosis

Health Directorate works fortunately now to have realized that they have long relied on incorrect information and that it is necessary with the introduction of new and more stringent diagnostic criteria for ME. This is an important step in stopping the overdiagnostiseringen which unfortunately taking place, and with it form the basis for the right patient gets the right treatment.

When Haukeland GPs Fluge and Mella published their study on the effects of the cancer drug Rituximab in ME last fall, it was given its great hope for ME sufferers. In a small, but very well done study experienced two thirds of patients clear improvement after treatment. The results attracted attention around the world and received great attention because discovery could potentially change the lives of hundreds of thousands of ME patients while providing an understanding of disease biological mechanisms.

Conspiracy Theories

In response to these brilliant news managed Journal of the Norwegian Medical Association for two leaders in quick succession to put forward conspiracy theories and more strange comparisons that seemed to have intended to ask the authorities, patients and Rituximab study in a bad light. It was given the impression that CFS patients as a group scares scientists and clinicians away from the disease. The reality is unfortunately that there are prejudices of many in the medical profession that scares away most people who are interested in researching the MES biological basis. There is nothing patients want more than biomedical research. There, however, they do not want is doctors who are researching various forms of fatigue and presents it as ME research.

The media's lack of critical attention on the dilution of diagnostic criteria contributes to blurring and polarize public debate on ME. This leads to a deep despair and frustration for thousands of Norwegians living with a life-long disease.

Political responsibility

Last year's report from SINTEF and the two leaders of the Medical Association Journal has exposed attitudes and beliefs that dominate in the medical community about ME. When you also know that ME / CFS costs the Norwegian society in excess of $ 1 billion annually in lost income, benefits, and nursing and care costs, a Norwegian politicians no longer leave important decisions about health care in this patient group to traditional agencies. One must ensure that the necessary resources and influence given to the academic communities who want and are able to differentiate ME patients from patients with other disorders.

Cancer doctors at Haukeland need 11 million to complete a large multicenter trial of Rituximab, and it is successfully write medical history. Should Council, contrary to expectations, reject the application for funding this world leading research, the patient wilderness continue.
Well, I disagree that there is one "distinct neuro-immune disease that historically only had the name Myalgic Encephamyelitis (ME)" – I think there are a few distinct diseases that will be found under the label ME. But otherwise it is

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