Updated U.S. Illness Codes Perpetuate Medical Ignorance of ME/CFS

Article Index
Why are U.S. codes problematic
What are international classification codes?
Confusion over names and diagnoses
The new ICD-10-CM code for the U.S.
Current methods for diagnosing ME/CFS
Consequences of the U.S. code
Effects of codes on disability insurances
What patients can do
More information


After more than thirty years, U.S. Centers for Disease Control and Prevention (CDC) is adopting an updated classification code for illnesses and diseases. This new code, the International Classification of Diseases-10-Clinical Modification (ICD-10-CM) will supersede the current U.S. code, the ICD-9-CM. Implementation of the new code is scheduled for October 1, 2014.

Why are new codes specific to the U.S. so problematic?

The new ICD-10-CM code will perpetuate the long-standing failure of the current code to properly classify the very real, organic illness, which has been misnamed as Chronic Fatigue Syndrome (CFS). CFS will remain at least partially classified under: "Malaise and fatigue" in the Chapter: "Symptoms, signs, and abnormal clinical and laboratory findings, not elsewhere classified." This vague and uncertain classification is detrimental to CFS patients, since it may encourage physicians and insurance companies to misdiagnose and classify the illness as a psychiatric, and not a physical disorder.

However, the illnesses Postviral fatigue syndrome and benign Myalgic Encephalomyelitis will be classified under "Other disorders of the brain", in the Chapter: "Diseases of the Nervous System". This nervous system and viral classification for ME/CFS is not especially well-known to either physicians or patients. Yet the knowledgeable physician can use this coding to classify ME/CFS, thereby enabling his/her patients to receive proper diagnosis, treatment, and disability benefits.

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What are international classification codes and how are they used?

In the United States and in countries around the world, illnesses are classified under an official system termed the International Classification of Diseases (ICD). Periodically, the ICD international code, administered by the World Health Organization (WHO) is revised; the current version is the ICD-10. Individual countries, with the permission of the WHO, may modify their codes for their own national purposes. These national revisions are called "Clinical Modifications" (CM). The codes used in the U.S., currently ICD-9-CM (to be updated to ICD-10-CM), is administered by the National Center for Health Statistics (NCHS), which is associated with the Centers for Disease Control (CDC).

Both the U.S. and international codes are used in epidemiology (tracking of illnesses), health management and clinical practice, and billing. The system is used in many types of health records, including mortality and morbidity statistics. The codes are also used by medical insurance and disability insurance companies in their determination of benefits—as well as by Medicaid and Medicare.

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Confusion of Names and Diagnoses: CFIDS, CFS, ME and Postviral Fatigue Syndrome (PVFS)

The illness that many patients and knowledgeable physicians refer to as Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) actually has two "official" names: Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME); and one official associated name, the Postviral Fatigue Syndrome (PVFS).

To understand the differences in these names and their importance to patients, a little history is in order. The devastating, flu-like illness with neurological and multi-systemic effects was identified as benign Myalgic Encephalomyelitis (bME) and Postviral Fatigue Syndrome (PVFS) by Dr. Melvin Ramsay and other doctors in Europe in the 1950s and 1960s. "Myalgic" means muscle pain and "encephalomyelitis" means inflammation or infection of the brain. Since the 1990s many patients and doctors in England, other European countries, Canada, Australia and New Zealand have used the term ME as the name for the illness. (When ME was first defined in England in the 1950s the word "benign" was attached for a short time; later the illness became simply ME.)

In the United States, in the late 1980s, the same illness came under the scrutiny of the U.S. Centers for Disease Control (CDC). Unfortunately, the CDC constructed a flawed diagnostic criteria to very broadly cover "fatiguing illnesses"—both physical and psychological. The problem with the illness case definition was that it included patients with the real illness (ME), but it also appeared to include patients with other physical and psychological illnesses, thereby misleading doctors and the public as to the nature and seriousness of ME.

The CDC also came up with a medically unscientific name for the illness: Chronic Fatigue Syndrome. This name trivialized the illness and stereotyped patients as not really sick—they were just depressed or "stressed out", and should by better behavior or thinking, get better.

However, during the 1990s when research demonstrated definite immunological and other physical abnormalities in patients, a number of patient organizations in the U.S. designated the illness as the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

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Diagnostic Codings in the new U.S. Code (ICD-10-CM)

As already mentioned, Chronic Fatigue Syndrome, the name most used to identify the illness, will be placed after October 1, 2014 in the vague "orphan" category: Chapter 18, "Symptoms, signs, and abnormal clinical and laboratory findings, not elsewhere classified" (R00-R99). The R53 subsection, in which CFS is placed, is titled "Malaise and Fatigue". CFS is specifically coded as R53.82, "Chronic Fatigue Syndrome, unspecified> Chronic Fatigue Syndrome (NOS)" [Not otherwise specified]. Again, it's not hard to see how this placement undermines a scientific understanding of ME/CFS.

This coding of CFS follows the current ICD-9-CM code (in force for many years) which also places CFS in the vague category: "General Symptoms", in the Chapter:  "Symptoms, Signs, and Ill-Defined Conditions". The code for CFS is 780.71. Because most doctors and insurance companies in the U.S. know ME/CFS as Chronic Fatigue Syndrome, the illness has been frequently coded as 780.71.

However, less well known by physicians is the placement both in the current ICD-9-CM and the new, revised code ICD-10-CM of (b)ME and Postviral Fatigue Syndrome (PVFS) under Diseases of the Nervous System. In the ICD-10-CM, (b)ME and PVFS will be coded in Chapter 6 "Diseases of the Nervous System", in the subcategory G93 "Other Disorders of the Brain". G93.3 is the actual code for (b)ME and PVFS.

In the current ICD-9-CM, ME/CFS is classified as a nervous/organ system disease in Chapter 6, "Diseases of the Nervous System and Sense Organs" (320-389), under subheading 320-326 "Inflammatory Diseases of the Central Nervous System". The Tabular Listing gives the specific code as 323.9: "Unspecified cause of encephalitis, myelitis, and encephalomyelitis." The associated Index document lists "Encephalomyelitis (chronic) (granulomatous) (hemorrhagic necrotizing, acute) (myalgic, benign) (see also Encephalomyelitis)" also coded as 323.9.

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Diagnosing ME/CFS and assigning a code

Obviously, most patients with ME/CFS will be far better served if they are coded as 323.9 under the current code and under G93.3 when the new code takes effect.

The assignment of a diagnosis and an illness code is usually provided by the patient's own doctor(s). Most U.S. doctors are unfamiliar with the assignment of a nervous system code for ME/CFS—they usually code for CFS under the vague "Signs and Symptoms" category. If a doctor does not understand or fails to pick-up on the viral/nervous system components of the patient's illness, then a patient may be coded as having CFS in the R code, instead of PVFS/ME in the G code.

Many doctors are also unfamiliar with actually how to diagnose ME/PVFS. Obviously, a proper diagnosis of the illness is a requirement before assigning a code. Doctors in the U.S. will usually diagnose the illness as CFS because knowledge of the flawed CDC 1994 CFS definition is more widespread.

Patients and their doctors need to become aware of the proper diagnostic methods for diagnosing ME/CFS. Despite the historical emphasis in the U.S. on the flawed 1994 CFS definition, the CDC has recently begun referring to the illness as ME/CFS.

The best current methods for diagnosing ME/CFS in adults—in line with the nervous system codes are:

1) the 2003 ME/CFS Canadian case definition/diagnostic criteria;
2) the 2011 ME International Consensus case definition/diagnostic criteria.

In children, the similar ME/CFS diagnostic criteria are:

1) the 2006 ME/CFS Pediatric case definition/diagnostic criteria;
2) the 2008 ME/CFS Pediatric case definition/diagnostic criteria.

Links to the different case/definition criteria are provided under More Information.

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The important practical consequences regarding the classification of patients as having CFS, ME and PVFS

The upcoming revised U.S. code will be used to gather illness statistics and epidemiological data. It will be used to provide for health care utilization, quality review and resource allocation. If most patients continue being classified as having CFS under the R code, there will continue to be a breakdown in the recognition and the provision of treatment for the illness.

Moreover, the publication of the new ICD-10-CM is being closely coordinated with the Centers for Medicare and Medicaid Services (CMS) and the development of IT systems for electronic record keeping. The perpetuation of improper diagnosis will negatively affect how doctors who are reviewing patients' records will respond.

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Effects of diagnostic coding on Disability Insurance and Social Security disability programs

The best choice for assigning a name and coding to CFS/CFIDS/ME patients who are applying for disability benefits remains somewhat tricky, at least until a consensus occurs as to the proper name for the illness. The Social Security disability programs have developed their regulations and approval processes for the CFS diagnosis.

On the other hand, the diagnosis of CFS is blatantly used by employer-related and private long-term disability (LTD) policies to severely limit disability benefits. Insurance companies, in the past few years, began to sell policies to employers that limit benefits to CFS and other "subjective" illnesses to two years. The previous generation of policies—many still in force— limited benefits to two years if the individual had a "mental impairment". With CFS coded as a vague illness of malaise and fatigue, and misunderstood by many physicians as being partially psychiatric, the R coding for CFS can serve as an obstacle to obtaining these benefits.

A diagnosis under the G code would be a definite improvement for private or employer-related disability insurance—ME/PVFS would be a much better diagnosis. The physician should emphasize the post-viral causation along with the severity and chronicity of physiological system impairments.

Also, the coding of the illness is important for another reason. If a physician or psychiatrist conceives ME/CFS as a psychiatric illness and uses the R code, it is possible that the patient will be classified by their medical insurance as a psychiatric patient. Medicare only reimburses 50% for a mental health claim, not the usual 80% for a physical illness.

The issue of psychiatric diagnosis for ME/CFS may be somewhat heightened with the upcoming publication of the new Psychiatric Diagnostic Manual 5 (DSM-5) which introduces a new psychiatric diagnosis, Somatic Symptom Disorder (SSD). For more information on this topic, follow the link to our onsite article listed under More Information.

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What patients can do

Knowing the diagnostic names, criteria, and coding, including the Canadian ME criteria, the new International Consensus Criteria and the various coding options will allow patients and their physicians to better diagnose, name and code their illness.

The Massachusetts CFIDS/ME&FM Association has always made patient education a priority. Patients and patient associations need to be armed with the important information about the diagnosis and classification of their illnesses.

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More information

The International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM)

The 2003 Canadian ME/CFS case definition

The 2011 ME International Consensus Criteria

The 2008 ME/CFS Pediatric Diagnostic Criteria (short version)

DSM-5 Makes Way for Misdiagnosis of Physical Illness as Mental Disorders—reviews the flaws and risks posed by the new diagnostic criteria, Somatic Symptom Disorder (SSD), included in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders.

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DSM-5 Makes Way for Misdiagnosis of Physical Illness as Mental Disorders

The American Psychiatric Association (APA) will be releasing its fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM) during summer of 2013. Since the first edition introduced by the APA in 1952, the DSM has served as the primary guideline used by clinicians in the mental health field for diagnosing and coding mental disorders, as well as by insurance companies for reimbursement decisions. It is widely utilized by all types of medical practices and hospitals, the courts, researchers, pharmaceutical companies, and by governmental agencies and policy makers.

The fifth edition, DSM-5, includes a new psychiatric category, Somatic Symptom Disorder (SSD), which is so broad and ambiguous that it could apply to many medical problems and diagnose these as mental disorders. This new criteria is causing great concern among ME/CFS organizations and advocates as well as many discerning physicians and psychiatrists who are speaking out against it because SSD may easily be substituted as a false diagnosis for ME/CFS and other well-established physical illnesses. Despite efforts by many to get revised wording of the SSD diagnosis criteria, the DSM-5 has already gone to press.

Dr. Allen J. Frances, chair of the DSM-4 Task Force and chair of the department of psychiatry at Duke University School of Medicine, Durham, NC and currently, professor emeritus at Duke University has written about the deficiencies and dangers of SSD criteria and the APA’s rush to publish the DSM-5 in a series of articles for Psychology Today, as follows:

• In his first article, “Mislabeling Medical Illness As Mental Disorder” (December 8, 2012) Dr. Frances explains how DSM-5 will allow for a quick diagnosis of an illness to be made on few physical symptoms, without consideration of other factors, and with the focus on the patients’ reaction concerning their health problems.

“Bad News: DSM 5 Refuses to Correct Somatic Symptom Disorder” (January 16, 2013) Dr. Frances discusses how improvements to the wording of the SSD criteria was submitted, but not accepted by the APA. He shares his misgivings about APA’s defensive posture and the dire consequences of DSM-5 on patients.

“Why Did DSM 5 Botch Somatic Symptom Disorder?” (February 5, 2013) Dr. Frances questions the APA’s rush to get the DSM5 to press and the omission of quality control steps in their haste.

• Two days later, in another article, “DSM5 in Distress” (February 7, 2013) Dr. Frances looks at what he can do to alert the public and clinicians and reports on a book he has written for clinicians that will help “to make accurate diagnoses and to avoid the DSM 5 pitfalls.”

On February 14, 2013, Dr. Keith Ablow, graduate of Brown University and the Johns Hopkins School of Medicine, an assistant clinical professor at Tufts University School of Medicine, and board-certified in adult, adolescent and forensic psychiatry, spoke out against the new psychiatric illness category of SSD, to Fox News, “Does somatic symptom disorder really exist?” (Fox News) Dr. Ablow has serious concerns about how people who may simply give their health problems extra time or attention will risk being labeled with Somatic Symptom Disorder (SSD). He explains how a patient can meet the criteria for SSD by having one physical symptom that is disruptive or distressing to his or her daily life, for at least 6 months, and only one of the following:
“a) The person has disproportionate, persistent thoughts about the seriousness of their symptoms
 b) The person reports or displays a persistently high level of anxiety about his or her health or symptoms
 c) The person is devoting excessive time and energy to his or her symptoms or health concerns”

Proposed Changes in ICD Coding for CFS

Changes proposed regarding the coding of Chronic Fatigue Syndrome (CFS) in the next edition of the International Classification of Diseases – Clinical Modification (ICD-CM-10) were discussed at the September 14, 2011, meeting of the ICD-9-CM Coordination and Maintenance Committee. ICD codes are used world-wide to classify diseases and gather statistics for health management and other purposes. How “Chronic Fatigue Syndrome” is classified in the U.S. edition could have an impact on patients.

There were two proposals presented, but both would result in CFS being coded in Chapter 6, “Diseases of the nervous system (G00-G99)”, where Myalgic Encephalomyelitis (ME) is currently classified, rather than in Chapter 18, “Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99).”

The public comment period on these proposals has ended, and a decision is expected after the first of the year. At the same time as the ICD is being revised, the American Psychiatric Association is preparing version 5 of its Diagnostic and Statistical Manual of Mental Disorders (known as DSM-5), which is due to be released in May, 2013. DSM-5 includes a new category of psychiatric illness, Complex Somatic Symptom Disorder (CCSD). Under the definition of CCSD it is possible that many ME/CFS patients could be labeled as having a psychiatric illness, CSSD. The Massachusetts CFIDS/ME & FM Association has joined with other U.S. patient organizations to advocate against the potential misuse of this new psychiatric diagnostic category in the diagnosis of ME/CFS/CFIDS and Fibromyalgia. Read more about Advocacy.

What this means

If CFS is coded as a disease of the nervous system in ICD-10-CM, there will be a stronger case against the misuse of the CSSD psychiatric diagnosis in cases of Chronic Fatigue Syndrome, which is a medical, not a psychiatric illness.

What are ICD codes and how are they used?

The International Classification of Diseases has been the responsibility of the World Health Organization (WHO) since 1948. “The ICD is the international standard diagnostic classification for all general epidemiological, many health management purposes and clinical use. It is used to classify diseases and other health problems recorded on many types of health and vital records including death certificates and health records [… and] provides the basis for the compilation of national mortality and morbidity statistics by WHO Member States.” Individual nations can modify the ICD codes in order to better accommodate their needs, but only with permission from the WHO.

In the U.S., the ICD is used in epidemiology (tracking of illnesses), health management, and clinical practice, including billing. The system is used in many types of health records, including mortality and morbidity statistics. The coding system is used by medical insurance companies, as well as Medicare and Medicaid. The codes are also used by disability insurance companies in their determination of benefits.

What are DSM codes and how are they used?

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is published by the American Psychiatric Association, and is the standard classification of mental disorders used by mental health professionals in the United States. Each of the diagnostic labels in the DSM is associated with a diagnostic code derived from the ICD.

“Making a DSM diagnosis” consists of selecting those disorders from the classification that best reflect the signs and symptoms that are exhibited by the individual being evaluated. Associated with each diagnostic label is a diagnostic code, which is typically used by institutions and agencies for data collection and billing purposes. DSM diagnostic labels are thus closely related to/dependent on ICD codes, and changes in ICD-10-CM to clearly identify Chronic Fatigue Syndrome as a medical illness will hopefully make it less likely that patients will receive an incorrect psychiatric diagnosis.

More resources

“HHS Announces ICD-10 Delay” (MedPage Today – April 9, 2012) The Department of Health and Human Services (HHS) now recommends the deadline for implementing the new ICD-10 diagnosis coding system be extended by one year, to October 1, 2014. Some healthcare providers claim they are not able to put necessary systems in place and fully test these within next 6 months.

New Provisional Criteria for Clinical Diagnosis of Fibromyalgia

In May 2010, the American College of Rheumatology (ACR) released new criteria for the clinical diagnosis of Fibromyalgia (FM). The proposed criteria are provisional and will still need to be intermittently updated.  Read a summary.

Tender Points might no longer be used for diagnosis of Fibromyalgia

Article index

New provisional criteria for clinical diagnosis of Fibromyalgia
Why new diagnostic criteria were needed
The new criteria for FM diagnosis
How the new criteria were developed
Results of the study
Reaction by patients and physicians
More resources

In May 2010, the American College of Rheumatology (ACR) released new criteria for the clinical diagnosis of Fibromyalgia (FM). The proposed criteria are provisional and will still need to be intermittently updated. For the last 20 years, besides having widespread pain on both sides of the body for at least 3 months, a patient needed to have pain (not just ‘tenderness’) present in 11 out of 18 specific tender point sites in order to be diagnosed with FM.

The new preliminary criteria recommend that the tender point examination be replaced with a combination of a wide pain index (WPI) and severity scale of symptoms (SS) as the revised standards for the diagnosis of FM.

The study supporting the revised criteria was published in the May 2010 issue of Arthritis Care & Research journal titled, The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity. The authors of the revised criteria are Frederick Wolfe, Daniel J. Clauw, Mary-Ann Fitzcharles, Don L. Goldenberg, Robert S. Katz, Philip Mease, Anthony Russell, I. Jon Russell, John B. Winfield, and Muhammad B. Yunus.

 

Why new diagnostic criteria were needed

This major revision of the diagnostic criteria was precipitated by numerous shortcomings of the 1990 ACR standards. Dr. Robert M. Bennett of Portland, Oregon, one of the FM specialists who helped to create the original criteria, discussed some of these problems in a recent FM publication. Dr. Bennett stated that considerable skill is needed to correctly check for a patient’s tender points (i.e., digital palpation that is done with certain amount of applied pressure), yet this technique is not typically taught at most medical schools.

Many primary care physicians have been avoiding tender point examinations, or if the exams were performed, they might often have been done incorrectly. It is thought that a percentage of patients who likely have FM have not been diagnosed with it, either due to poor examination of their tender points or not having the minimum number of required tender points. As a result, physicians had already started to rely on symptoms commonly found in FM patients (i.e., sleep problems, decreased mental clarity, forgetfulness, and impaired function during daily activities) when making a diagnosis of FM, but with no consistent standards in place.

Other specialists mentioned in their criticisms: the excessive focus on tender points, which had not improved overall medical knowledge about the cause of pain in FM; that the examination of tender points also did not accurately measure the effectiveness of treatments (i.e., treatments which might help FM patients may not cause any changes to their tender points); that the fluctuation of pain and presence of many other symptoms had been long overlooked; and, that studies of FM were disproportionately limited to females.

One of the study authors, Dr. Robert S. Katz, a rheumatologist at Rush University Medical Center, elaborated on this discrepancy in a June 2010 issue of Science Daily, "The tender point test also has a gender bias because men may report widespread pain, but they generally aren't as tender as women. Fibromyalgia may be under-diagnosed in both men and women because of the reliance on 11 tender points, rather than considering other central features of the illness.”

However, most researchers felt the old criteria had helped to bring the science and recognition of FM to where it stands today.

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The new criteria for FM diagnosis

The new criteria for FM diagnosis were developed during a 2010 study intended to  create a simple, efficient and uniform standard that would be used in the clinical diagnosis of FM, and that would also be easy to use in primary and specialty care settings.

The new standards were designed to:

  • eliminate the use of a tender point examination
  • include a severity scale by which to identify and measure characteristic FM symptoms
  • utilize an index by which to rate pain

Taking into consideration the amount of data that was analyzed at great length by the authors in the original research article, details for various statistics, tables and figures, and in-depth discussions were omitted from this report. A link to the full text of this report is provided at the end of this article (see More Resources). It may be worthwhile for patients to tell their doctors about this study and/or to print a copy of the article and review the new criteria with them. One chart in particular, Table 4 on page 607, provides a “snapshot” of the new fibromyalgia diagnostic criteria. This page could serve as a helpful reference sheet.

In short, the study concluded that the most significant diagnostic variables were the “widespread pain index” (WPI) and the categorical scales for cognitive symptoms, unrefreshing sleep, fatigue, and other somatic symptoms. These categorical scales were added up to create the “symptom severity score” (SS) scale.

Due to the study, the new case definition of Fibromyalgia will be made on the following criteria:

  1. The values and ranges allowed for the WPI and the SS scales should meet one of the combinations:  WPI >7 AND SS >5 or WPI 3–6 AND SS >9.
  2. Symptoms have persisted at this level for the past 3 months.
  3. Patient does not have any other disorder or cause to explain the pain

How the new criteria were developed

The data for the creation of these criteria was attained through a multicenter study totaling 829 patients, which was conducted in two stages. Patients labeled as the FM group needed to have a previous diagnosis of FM and the control group were patients who had various non-inflammatory pain disorders. All patients in the study underwent physicals and interview assessments, and their pain levels were measured using a “widespread pain index” (WPI). Their symptoms were identified (from a predetermined list) and scored for severity (SS).

The first phase was designed to gather and examine a more extensive set of patient and physician variables and it served as the basis for the second phase. Phase 1 analysis used 3 groups of “classifier” variables: a short set, an intermediate set and a complete set.

Phase 1 of the study—data provided by patients. The first phase of the study started out with 610 patients, but 96 of these were rejected due to various protocol violations. Therefore, the first stage consisted of 514 patients and controls. Patients had to complete multiple forms with information about their pain and other symptoms, by specific categories, along with ratings for these symptoms based on what they had experienced during the preceding week (i.e., the data reflects what patients experienced for the duration of one week).

The summary below highlights the type of data provided directly by the patients:

  • Which of 19 locations where they had pain during that particular week and also the rating of the pain according to a given scale—this is defined as the “widespread pain index” (WPI)
  • Ratings on 4 visual analog scales for four key symptoms during that particular week such as the severity of pain that they had, how much of a problem had fatigue been, how much of problem had sleep been, and, how much of a problem waking up unrefreshed had been
  • A Health Assessment Questionnaire II functional disability scale
  • The number of medications they had used in the last month to control pain and to what extent they had experienced morning stiffness
  • How many symptoms they had experienced in the last 3 months, from 56 designated, that are characteristic of FM

Phase 2 of the study—data provided by physicians. For the second phase, 315 patients and controls were added to the study group following the same methods and rules. In this phase, patients did not complete any questionnaires.  Phase 2 forms were simplified and were completed only by the physicians. This was to determine if shorter forms and assessments would be as effective as the more detailed ones used in Phase 1. Information about the patients’ overall pain was scored by the physicians using the WPI, but the individual regions were not scored.

The summary below highlights the information that physicians had to provide for Phase 2:

  • Information from tender point examinations which were required in this phase
  • Whether these 3 distinctive symptoms were present or absent: muscle pain, muscle tenderness and/or irritable bowel syndrome
  • Rating of the patients’ somatic symptoms (from a list of 41 symptoms)
  • The categorical scales for 4 key symptoms: sleep disturbance, unrefreshing sleep, cognitive problems, and fatigue

Results of the study

Results of study found that approximately 25% of FM patients did not meet the  American College of Rheumatology (ACR) 1990 criteria.

This study was able to show that the new, simple clinical case definition of FM had correctly classified 88.1% of cases which had met the previous ACR criteria, without physical or tender point examination.

An interesting discovery was that the 19 locations identified as probable areas of pain did not include any joints as sites for pain. The list of somatic symptoms made no mention of joint pain nor problems having to do with joints.

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Reaction by patients and physicians

The new case definition has been generating mixed reaction from patients and physicians. Initial reaction by patients was captured in a survey conducted by the Fibromyalgia Network. This survey revealed two major concerns that patients had: the amount of pain that someone would need to experience in a given area to result in a positive WPI value; and confusion caused by the dual approaches for symptom evaluation and rating.

For example, muscle pain or tenderness is rated by patients on the pain side of the equation. Almost 89 percent of the 4,500 participants in this independent survey felt they were able to meet the new criteria whereas 11 percent found themselves excluded, even though they had met the older ACR criteria. Some reasons for this discrepancy were that patients were receiving effective medical treatment or that patients already knew their triggers and had better coping skills.

While some patients with FM were left out, it was discovered that individuals who do not have FM were able to meet the new criteria. This raises an obvious concern about incorrect diagnosis of FM. Physicians are urged not to rely primarily on the measurement of symptoms without doing a thorough physical exam. Dr. Bennett strongly recommends that “a carefully structured physical examination should be part of any criteria for FM.”

The authors of this study agree that it has a number of limitations/shortcomings, and have recommended a follow-up study of patients with other rheumatic conditions in the primary care setting in order to narrow down the rate of misclassification when using this criteria.

Lilly Research Laboratories had funded this study, though it is reported that they did not participate in the design of the study.

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More resources

Full text of the article (PDF)

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