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Is
a given abbreviation for the new disease-name already in use?
20 reasons the name,
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Too
many patients continue to have prejudicial events that make their existence
with a misnamed disease all the more unbearable. |
Gail
Kansky |
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1 |
It is impossible to convey the clinical severity of an illness whose name merely denotes tiredness. |
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2 |
The current name conjures up an image of lazy, whiny malingerers, thereby subjecting them to incredulity and ridicule. There have been numerous jokes about CFS in the media by well-known comedians which is upsetting and demoralizing to patients. |
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3 |
The names implies "I'm tired all the time" which works against the actual severity of the illness on all levels of life making the stress of being not believed only adding to the burden of having a severe neurological illness. |
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| 4 |
The current name impacts scientific methodology and outcomes. It has not been unusual for published scientific studies to have confused chronic fatigue with chronic fatigue syndrome (Journal of the American Medical Association, 264/1, 1990, and many others). It allows some in the field of psychiatry to incorrectly select patients with chronic fatigue instead of chronic fatigue syndrome, leading to erroneous conclusions as to the nature of the disease. |
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5 |
The
name has thwarted private fundraising efforts as nobody |
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6 |
The current name, elevated one symptom to an inflated status, has wasted much research money in comparing it to other "fatiguing illnnesses" which is still going on today (see Centers for Disease Control and Prevention current funding projects, etc.). This has left etiology and pathophysiology far behind. |
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7 |
The
name of this illness was ME (myalgic encephalomyelitis) since the 1950's which has been fully documented in scientific literature. |
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8 |
Donna
Shalala, former head of the DHHS, said on an ABC |
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9 |
But, the scientists had already named this illness when the US changed the name. Only 4 sicentists on the committee that did this had actually worked in the area and all four objected to the name proposed as well as to the criteria. It was, subsequently, published without their names. |
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10 |
Several members of the original name change now regret the the name they created and now admit that they did not foresee the consequences. One who has never apologized is now on the current CFS Advisory Committee who turned down a three year draft proposal (and neglected to call it a "draft", saying it was a name change despite letters sent to the members). With this conflict of interest, shouldn't a recrusal from the vote have been more appropriate? |
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11 |
The name has negative impact on every patient's health. Changing the name would remove much of the stigma and bias that the name has created. |
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12 |
Other illnesses have had name changes with no apparent detrimental effects. |
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13 |
The President of the United States was asked for an official proclamation for Awareness Day. His office replied, several months later, that things like this are not done. The name implication was obviously the stumbling block that led an aide to turn down the request as there are days, weeks and months for every other known disease as well as other things considered "important" such as "National Blood Donor's Week", etc. In spite of a draft of reasons that showed science and known abnormalities, the name was, obviously, the reason for the rejection. |
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14 |
The
American Association of Chronic Fatigue Syndrome "The name CFS makes it difficult to secure research funding for "The name CFS makes it difficult to secure other forms of "The name CFS makes it diffucult to secure help from "The name CFS makes it diffucult to garner respect/support "The name CFS makes it diffucult to get CFS research papers
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15 |
A
majority of patients (92%), in multiple surveys over the years, are in favor of a name change. |
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16 |
A
majority of patient organizations in the United States and around the world are in favor of a name change. Only one has said, "Not at this time, however." |
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17 |
Former US Assistant of Health, Philip R. Lee, M.D. said, "First and foremost, most physicians have no respect for the name and it sends the wrong message" as he urged the AACFS to take strong action to advocate a name change before the Department of Health and Human Services (DHHS). |
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18 |
The first winner of the AACFS's Rudy Perpich Memorial Lifetime Achievement Award in CFS was Alexis Shelakov, M.D. In his acceptance speech, Dr. Shelakov called for a name change. |
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19 |
The
second winner of the AACFS's Rudy Perpich Memorial Lifetime Achievement Award was Philip R. Lee, M.D., who fought for a name change while a federal employee of the DHHS. He left for a position with UCLA, discouraged at the lack of movement in what the majority of professionals and patients agreed upon---a change of name. |
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20 |
In
a book authored by David S. Bell, M.D., the chair of the new Advisory Committee who read a statement asking for no name change at the second meeting and never allowed discussion of a draft proposal (and, incorrectly, referred to it as a "name change") by a federally appointed committee who had worked for three years, he wrote: "(CFS)...implies a benign condition of almost no importance..." |
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We could go on with another 100+ reasons, quotes, and mistreatment due to the name chronic fatigue syndrome. |
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