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CFIDS Association chides CDC on focus of ME/CFS research dollars

Monday 13 December 2010

ProHealthProHealth reports:

CFIDS Assoc. Chides CDC on Focus of ME/CFS Research Dollars

December 10, 2010

On Nov 8, 2010, a report on CDC-funded research by Nater et al. – “Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study” - was published in the journal Psychotherapy and Psychosomatics.

A reading of the report reveals that in fact Nater et al. found no more frequency of maladaptive personality traits in their CFS cohort than in those with other chronic illnesses such as multiple sclerosis (i.e., debilitating illnesses are punishing), and that the large majority of their CFS patient cohort had no symptoms of personality disorder.

However:

  • The popular media took away such messages as this one in a MedicalNewsToday.com report, titled “Is Chronic Fatigue Syndrome a Personality Disorder?” and beginning: “This study suggests that chronic fatigue syndrome is associated with an increased prevalence of maladaptive personality features and personality disorders.”
     
  • And there’s the issue of why the CDC’s CFS research funds have remained focused on re-plowing this old field.

On Nov 11, three days after the Nater et al. article hit the media, the CFIDS Association of America issued a scalding STATEMENT ABOUT RECENT PUBLICATION FROM CDC (http://www.cfids.org/pdf/response-110810-study.pdf). The statement, which was disseminated again on Dec 9 via the Co-Cure Listserv as media questions about CFS continue:

  • Points out that the study selected its cohort using the Reeves case definition of CFS (the so-called "empirical" definition), which is used only by the CDC and is "widely criticized" for extending the definition of CFS to allow “too broad a patient cohort with higher rates of psychiatric comorbidity.”
     
  • Notes that even though the CDC's CFS research program is housed in theDivision of High Consequence Pathogens and Pathology, it "has sacrificed laboratory-based studies to conduct assessments of personality and early life stress."
     
  • Concludes that “In a time of scarce federal resources, CDC must focus its programs on research that will contribute to advances in patient care and improved quality of life, rather than topics that deepen misunderstanding and perpetuate stigmatizing myths about CFS.”

To access a printable pdf file of the CFIDS Association’s STATEMENT ABOUT RECENT PUBLICATION FROM CDC, go to http://www.cfids.org/pdf/response-110810-study.pdf

The above originally appeared here.

CFIDS Association Statement

The CFIDS Association of AmericaThis is the statement from the CFIDS Association of America:

STATEMENT ABOUT RECENT PUBLICATION FROM CDC

November 11, 2010

The study by Nater et al published in the Nov. 8, 2010 issue of Psychotherapy and Psychosomatics, “Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study,” reflects a disproportionate and unproductive focus by the U.S. Centers for Disease Control & Prevention on psychological topics that have failed to advance objective means to diagnose and effectively treat chronic fatigue syndrome (CFS), a complex and disabling condition that affects at least one million American adults, teens and children.

In this study, 70 percent of 113 participants classified as having CFS showed no sign of maladaptive personality traits. The authors state that, “comparing CFS to other chronic illnesses, such as multiple sclerosis, (we) did not find differences regarding the prevalence of comorbid personality disorders.

Personality disorders are therefore unlikely to be specific to CFS, but might be related to the chronicity and severity of an illness.” They also raise the possibility that illness severity and feeling unwell might impact how participants respond to questions about personality. They made no assessment of participants’ personality traits before illness onset.

Participants in the study were selected according to criteria (2005, Reeves) used only by CDC to define CFS. This classification criteria, known in the field as the “empiric definition,” has come under strong criticism for capturing too broad a patient cohort with higher rates of psychiatric comorbidity.

For the past three years, CDC’s CFS research program, housed in the Division of High Consequence Pathogens and Pathology, has sacrificed laboratory-based studies to conduct assessments of personality and early life stress. This shift has come under fire from advocacy organizations and the research community alike, including tough scrutiny by the Department of Health and Human Services CFS Advisory Committee that makes policy recommendations to the Secretary of Health and Human Services.

CFS is estimated to cost $17-25 billion annually in medical and disability payments and lost productivity. It exacts a huge toll on the individual, the family, the community and the nation. In a time of scarce federal resources, CDC must focus its program on research that will contribute to advances in patient care and improved quality of life, rather than topics that deepen misunderstanding and perpetuate stigmatizing myths about CFS.

The statement from the CFIDS Association originally appeared as a PDF file here.

 


 

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