Chronic Fatigue Syndrome and Fibromyalgia Resources on the World Wide Web: A Descriptive Journey
- Victor L. Yu, Section Editor,
- Nelson M. Gantz1,3, and
- Elizabeth E. Coldsmith2
- 1 Division of Infectious Diseases, Department of Medicine, Harrisburg
- 2 Library Services, Pinnacle Health System, Harrisburg
- 3 Medical College of Pennsylvania, Philadelphia
- Reprints or correspondence: Dr. Nelson M. Gantz, Dept. of Medicine, Pinnacle Health System, 2601 N. Third St., Harrisburg, PA 17110 (mgantz{at}pinnaclehealth.org).
Abstract
A wealth of information on chronic fatigue syndrome (CFS) and fibromyalgia is available on the World Wide Web for health care providers and patients. These illnesses have overlapping features, and their etiologies remain unknown. Multiple Web sites were reviewed, and selected sites providing useful information were identified. Sites were classified according to their content and target audience and were judged according to suggested standards of Internet publishing. Fifty-eight sites were classified into groups as follows: comprehensive and research Web sites for CFS and fibromyalgia, meetings, clinical trials, literature search services, bibliographies, journal, and CFS and fibromyalgia Web sites for the patient.
A renewed interest in chronic fatigue states began in the early 1980s with an outbreak in Lake Tahoe, Nevada. Following this cluster of cases of fatigue, there were reports that linked persistent fatigue and Epstein-Barr virus infection. To better characterize these conditions, the Centers for Disease Control and Prevention (CDC) convened a working group in April 1987 and developed a consensus case definition. The illness was called chronic fatigue syndrome (CFS) [1]. An Australian group's definition for CFS was also published in 1988 [2]. To address the problems with the CDC case definition, the Green College criteria were published in 1991 [3]. To better define the cases of fatiguing illnesses, the CDC case definition was revised in 1994 [4]. With the publication of the various case definitions for CFS, it became obvious that other illnesses had overlapping symptoms, including fibromyalgia and certain psychiatric illnesses. Fibromyalgia has been characterized by severe pain and so-called tender points. However, patients with fibromyalgia often note fatigue, sleep disturbances, headaches, and paresthesia. Patients that fit the case definition for CFS will often fit the case definition for fibromyalgia and vice versa [5].
Since the 1980s, there has been an outpouring of articles and information on the World Wide Web on these 2 disorders. The causes of these disorders remain unknown and the subject of much controversy. The Internet has become an invaluable source of information on CFS and fibromyalgia because the conditions generate so much information and misinformation in the media. In this report, we provide a guide to various reliable Internet sources for health care providers and researchers as well as for patients with CFS and fibromyalgia. This review focuses on English-language Web sites devoted to CFS and fibromyalgia.
Methods
Search engines and lists of links included on the Web sites that we reviewed provided the addresses of hundreds of sites on CFS, fibromyalgia, and myalgic encephalomyelitis (ME). In addition, a literature search retrieved 1 article that discussed CFS Web sites [6]. Each site was examined keeping in mind both the purpose of this article and the quality of Web site criteria as described by Health On the Net (http://www.hon.ch/) and other organizations that offer such guidelines. Of course, any guidelines proposed are voluntary for the developer, and many CFS sites are of unreliable scientific quality. Misinformation, sponsor bias, commercial sales, and lack of currency head the list of reasons that we chose to eliminate certain sites from our list. Goldenberg [7] stated that of the 120 sites he studied that were dedicated to fibromyalgia, “less than 25% of sites provided reliable information on diagnosis, pathophysiology, and treatment.”
Many Web sites with CFS information contain their own search engines. Various search strategies were used, depending on the Web site and the capabilities of their search engine. When we thought it was helpful for the user to know a specific strategy, it was included in the description of particular sites reviewed below. The following terms were used: “chronic fatigue syndrome,” “CFS,” “fibromyalgia,” “myalgic encephalopathy,” and “myalgic encephalomyelitis.”
Results
Comprehensive and research Web sites for CFS and fibromyalgia. There are a number of Web sites that give comprehensive information on CFS and fibromyalgia (table 1). The CDC's CFS Home Page is an excellent site that provides both professional and patient information on support groups, research, CDC publications, and clinical management of CFS and fibromyalgia (figure 1). However, the management page was last updated in 1998 and, ideally, should be revised yearly. Much of the information on this site is written at the consumer level but remains relevant for the health care provider as well.
Table 1
Comprehensive and research web sites for chronic fatigue syndrome (CFS) and fibromyalgia.
Figure 1
A screen shot of the Centers for Disease Control and Prevention's Web page on chronic fatigue syndrome
The National Institute of Allergy and Infectious Diseases (NIAID) thoroughly reviews CFS. It has an excellent site with a current fact sheet for patients and a summary of a meeting held in February 2000 that includes a discussion of research areas for study. Beginning at NIAID's home page, either use the “search” option to bring up a list of NIAID Web pages on CFS or click on “information” and then on “publications.” The latter displays a list of topics including CFS.
The United Kingdom's Department of Health Web site includes a page entitled “Chief Medical Officer's Working Group on Chronic Fatigue Syndrome/Myalgic Encephalomyelitis.” This page links the user to various meeting briefings which focus on CFS in both adults and children. These briefings are excellent discussions that deal with many unanswered issues of CFS and ME. Also of interest is their working paper titled “Discussion Document: an Overview of Recent Research Literature.” The full document, written in February 1999, is available on-line in portable document format.
The “Chronic Fatigue Syndrome Clinical Practice Guidelines” developed by the Royal Australasian College of Physicians appear on the Medical Journal of Australia Web site. A comprehensive clinical guideline is presented on CFS that is outstanding, current, and well referenced.
The CFS Doctors Page includes a brief discussion of diagnosis and treatment as well as links to other key CFS Web sites and a private discussion group limited to physicians only. The New Jersey Chronic Fatigue Syndrome and Fibromyalgia Center maintains a Web site in conjunction with the University of Medicine and Dentistry of New Jersey. This site focuses primarily on their current studies and how to enroll as a research subject.
The CFS Research Team site of De Paul University includes a number of excellent screening questionnaires used to evaluate and follow up patients with CFS. This site is extremely current and includes articles published in 2000 as well as in press articles.
The Web site for Georgetown University Medical Center's Chronic Pain and Fatigue Research Center contains a useful evidence-based treatment section. It also lists current studies but lacks information such as inclusion and exclusion criteria.
The American Fibromyalgia Syndrome Association is a nonprofit group that funds pilot studies on fibromyalgia and CFS and organizes a conference on updates of these disorders. Their Web site contains a listing of funded projects, grant applications, and a resource list that includes sources for CFS books and videos.
The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMSD) includes a page on their site titled “Fibromyalgia Research: Challenges and Opportunities” (figure 2). It gives background information on fibromyalgia and lists the NIAMSD research initiatives.
Figure 2
A screen shot of the National Institute of Arthritis and Musculoskeletal and Skin Diseases' Web page on fibromyalgia
The American Association for Chronic Fatigue is a nonprofit organization of research scientists, health care providers, institutions, and others interested in research and issues related to CFS. This site developed as a result of the work of a national support group, the Chronic Fatigue Immune Dysfunction Syndrome Association of America. Their Web site includes a list of research projects, a registry of physicians with CFS, position articles, minutes from their national meetings, and links to bibliographies and to other sites. The yearly national meetings have improved since their inception with more scientific content. However, many of the presentations are preliminary studies and never get published in peer-reviewed journals.
Meetings. Three Web sites provide information on professional meetings that deal with CFS and fibromyalgia (table 2). The US Department of Health and Human Services formed the Chronic Fatigue Syndrome Coordinating Committee, which meets several times a year and is open to the public. In addition to the meetings, this committee sponsors a Chronic Fatigue Syndrome State of the Science Conference, most recently held on 23–24 October 2000. Their relatively new Web site provides an agenda for these meetings and information relevant to the formation of the committee. It will be worth a second look in the coming months to see if the scientific conference presentations are added to the site.
Table 2
Web sites of meetings on chronic fatigue syndrome and fibromyalgia.
Clinical trials. Information on clinical trials can be accessed at several Web sites (table 3). The National Library of Medicine, in conjunction with the National Institutes of Health and the US Food and Drug Administration, maintains Clinical Trials, a Web site for both active clinical trials and those no longer accepting patients. The term “fibromyalgia” retrieved 5 trials, all recruiting patients. The studies listed included the following: “Assessing Fibromyalgia Therapies,” “Subgroups of Fibromyalgia,” “Behavioral Treatment of Fibromyalgia,” “Behavioral Insomnia Therapy for Fibromyalgia Patients,” and “Eligibility Screening for National Institute of Dental and Craniofacial Research Studies.” No trials for CFS were identified.
Table 3
Web sites of clinical trials on chronic fatigue syndrome and fibromyalgia.
CenterWatch Clinical Trials Listing Service, a division of Medical Economics Company, also lists clinical trials. One study involving patients with fibromyalgia is titled “The Regulation of Adrenal Function in Fibromyalgia.”
Current Controlled Trials, an international site developed by the Current Science Group headquartered in London, summarizes studies listed by various agencies such as the National Institutes of Health and National Research Register. The terms “fibromyalgia,” “chronic fatigue,” and “myalgic encephalomyelitis” were successful in finding different clinical trials using acupuncture, exercise, cognitive behavior therapy, and homeopathic treatment.
Literature search services. A variety of literature search services are available on the Web (table 4). Most of the choices reviewed here are free but may link the user to full-text items that would incur a charge. The most likely first choice for searching the medical literature remains the National Library of Medicine's MEDLINE, now in the form of PubMed. The National Library of Medicine's most recent addition to their search services is their consumer site, MEDLINEplus, a site offering a wide range of resources beyond the basic MEDLINE database. Results of a search for fibromyalgia in MEDLINEplus included both consumer and professional information in the form of dictionary definitions, clinical trials, directories, organizations, and various other links as well as the traditional bibliographic citations in the PubMed database. Other specialized search services include the Cochrane Library, Medical Matrix, and UnCover. In addition, there are Web sites that specialize in dissertations, such as UMI ProQuest, and Contentville.com, a recent addition to the Web.
Table 4
Web sites of literature search services for chronic fatigue syndrome (CFS) and fibromyalgia.
Cochrane Library is an evidence-based medicine database containing full reviews, protocols, and abstracts to clinical trials. Reviews for fibromyalgia and CFS included one on “Cognitive Behaviour Therapy for Adults with Chronic Fatigue Syndrome” and another on “Multidisciplinary Rehabilitation for Fibromyalgia and Musculoskeletal Pain in Working Age Adults.” Although the full text of the Cochrane Library is accessed through paid subscription only, citations to the reviews are included in PubMed. In addition, UpdateUSA, the American distributor of this British product, has a link allowing the nonsubscriber to request full-text document delivery of individual reviews. The search engine for Medical Matrix retrieves information from both its site and a host of other medical Web sites including full-text on-line textbooks, journals, symposia, and consumer health sites.
The UnCover database allows free keyword, author, or journal title search access to >18,000 journal titles that cover many academic fields. The field of medicine is well represented, and a search for “fibromyalgia” yielded multiple pages of citations from 1988 to the present. An added feature of UnCover is their product called UnCover Reveal. The user who subscribes to this service pays a subscription fee that allows them to store ⩽25-keyword or author searches plus a maximum of 50 journal titles from the UnCover database. The results, which include relevant citations and table of contents, are sent to the user's e-mail address on a weekly basis.
UMI ProQuest allows the visitor (a nonsubscriber) to access the most recent 2 years of their Digital Dissertations. A variety of citations for masters and doctoral level dissertations were retrieved by use of the following terms: “fibromyalgia,” “chronic fatigue,” and “myalgic.” The same search in Contentville.com brought up a list of 89 dissertations. Both UMI ProQuest and Contentville.com offer the user an on-line payment option to obtain the full dissertation.
Bibliographies. Several Web sites provide updated bibliographies on CFS (table 5). Ward's Web Site includes a description of the site as a “work space” for physicians and patients that will aid in the diagnosis and treatment of persons with CFS. The site consists mainly of a listing of journal articles and other articles on this topic. Readers are encouraged to contribute their findings and correspond on a public message board.
Table 5
Web sites of bibliographics on chronic fatigue syndrome (CFS) and fibromyalgia.
The Alison Hunter Memorial Foundation maintains a Web site of citations grouped into 58 subject categories; Scientific References for CFS includes a search engine to help the user locate specific abstracted citations.
Two comprehensive bibliographies that appear on the Internet are Dr. McGoodwin's Medrefs and the Chronic Fatigue Syndrome and Fibromyalgia Database and Fibromyalgia Information from the Oregon Fibromyalgia Foundation. Both sites contain >2000 references, some from the 1800s.
Journal of Chronic Fatigue Syndrome. The Journal of Chronic Fatigue Syndrome is available in various forms on 2 sites, although full text is not available on-line (table 6). The CFS-News site has a description of the journal, and BUBL, an Internet information service for higher education in the United Kingdom, maintains a keyword searchable index to issues of the journal.
Table 6
Web sites of the Journal of Chronic Fatigue Syndrome (JCFS).
CFS Web sites for the patient. The CFS Web sites for consumers and patients that were chosen for inclusion here were selected as a representation of the most informative sites and have value to the health care provider and the patient with CFS (table 7). Commercial consumer health megasites were not included, although they offer informational pages on CFS and fibromyalgia.
Table 7
Web sites for patients with chronic fatigue syndrome (CFS) and fibromyalgia.
The ME Association of the UK and the ME/Chronic Fatigue Syndrome Society of Victoria, Australia, represent 2 sites outside of the United States that provide a comprehensive array of information and support. As with many sites in the United States, some content on these sites is uniquely valuable to residents in Australia and the UK.
The CFS-News site (or Chronic Fatigue Syndrome/Myalgic Encephalopathy) also contains a long list of links to worldwide resources. Roger Burns maintains this page and the electronic newsletter, CFS-News, and 2 newsgroups, CFS-L and CFIDS-L. The former is a patient support group that began in 1992 with a current membership of ∼2000, while the latter is a political action group for CFS advocacy.
Another activist organization is the National Fibromyalgia Research Association based in Salem, OR. Information and current research on the controversial surgery for Arnold-Chiari malformation is included on their site.
The Chronic Fatigue Syndrome and Fibromyalgia Information Exchange Forum moderates a mailing list, “Co-operate and Communicate for a Cure.” Their Web site contains a reading resource list, instructions for joining the mailing list, and a wealth of links to additional sites. It has a list of current research and includes Spanish-language information.
The Fibromyalgia Association of Greater Washington provides an informative Web site. Their publication list includes on-line publications, audiotapes produced by the association, and links to books and pamphlets for purchase throughout the Web.
About.com is a commercial site that maintains hundreds of pages on an eclectic array of topics. Each topical page is written by a site guide knowledgeable on their chosen subject. The guide for the Chronic Fatigue Syndrome/Fibromyalgia page is a patient with CFS. A long list of subject categories guides the user to current material on diagnosis and treatment options, disability information, and support groups.
The CFIDS Association of America is a charitable organization interested in providing support for CFS education and research. It promotes involvement in grassroots advocacy and support groups. Its Web site offers a broad spectrum of current information, education, and news. This is one of several sites listed in table 7 that offers significant information for and about children with CFS.
The Fibromyalgia Network is a well-organized site that includes a quarterly newsletter, current information, links to other sites, and printed brochures and books.
There are several statewide CFS organizations that maintain Web sites. One example is the Wisconsin Chronic Fatigue Syndrome Association.
One concern to the patient with CFS is disability benefits. Look for the column in table 7 that identifies sites that contain disability information. Included in this list is the US Social Security Administration site and their fact sheet for patients with CFS.
Discussion
CFS and fibromyalgia are disorders diagnosed by a specific set of symptoms, including fatigue, pain, and neurocognitive difficulties such as sleep disturbance, cognitive dysfunction, and/or mood problems. These are overlapping disorders that have had a resurgence of interest since the late 1980s. To date, no clear pathophysiology or etiologies have been identified. Although abnormal results of laboratory tests such as evidence of immune activation, diminished cortisol secretion, positive tilt table test, and increased level of ribonuclease I may occur, a diagnostic marker is lacking [8–12]. Routine laboratory studies and results of physical examination are normal for patients with CFS. The diagnosis of CFS is one of exclusion. Although tender points occur in patients with CFS and fibromyalgia, their presence is not essential for the diagnosis.
It is likely that CFS and fibromyalgia are heterogeneous disorders with multiple predisposing factors (e.g., genetic precipitating factors and infection) and perpetuating factors (e.g., deconditioning). Patients with postinfection fatigue disorders may differ from those with trauma or stress at the onset. It is unclear why 75% of patients with these disorders are women. These disorders occur in children, but case definitions for children are lacking. Fibromyalgia and CFS occur worldwide.
Both pharmacological and nonpharmacological agents have been used to manage patients with symptoms of CFS and fibromyalgia. Most of the therapy administered is based on results of uncontrolled studies or anecdotal data. Because a diagnostic marker is lacking to monitor the outcome of a therapeutic intervention, controlled trials are essential for these patients. Health care providers are confronted daily with Web citations of news reports and articles detailing putative cures. For example, the identification of the Arnold-Chiari malformation in some patients with CFS and a “cure” following surgery have added hope as well as confusion to the field since controlled trials for surgery are lacking. The health care provider must monitor the Web to stay current in this rapidly evolving field. However, scientifically reliable sites are key, and the Internet can be a major source of invaluable information as well as misinformation and confusion.
Conclusion
The Web sites compiled in this article are a significant representation of the quality information available on the Internet for CFS and fibromyalgia. Although we analyzed multiple sites, only a small proportion were selected for review, and some valuable sites were undoubtedly overlooked. A vast amount of information currently exists on the Web for subjects with CFS, and this resource should play an increasing role in the future. As the number of sites increases, however, it may become more difficult to evaluate them. Because few sites are peer reviewed or ranked, this resource has the potential to provide misinformation as well as valuable knowledge. Objective evaluation and designation of CFS and fibromyalgia Web sites by peer-review consensus committees would be especially valuable to health care professionals and patients with CFS.
Acknowledgment
We thank Dr. Victor Yu for his critical review of the manuscript and helpful suggestions.
- Received October 20, 2000.
- Revision received November 15, 2000.
- © 2001 by the Infectious Diseases Society of America
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