Timeline of Key CFIDS* Events

1956                             

The term “myalgic encephalomyelitis” is coined for a CFIDS-like illness, investigated by Dr. Melvin Ramsey and published in the Lancet.

1984                             

First documented cluster of approximately 200 CFIDS cases occurs in Incline Village, Nev. This outbreak focused attention on the condition in the United States.

Dozens of children and adults in Lyndonville, N.Y. begin reporting a severe flu-like illness. Suspected cause of their symptoms: CFIDS.

1987                             

Name “chronic Epstein-Barr syndrome” begins to be used in U.S., based on preliminary studies by Dr. Stephen Straus of the National Institutes of Health (NIH); he later revises his theory linking the illness to Epstein-Barr virus (EBV) following intense scientific criticism.

The Charlotte CEBV Association (named following speculation about EBV as cause of the illness), founded by Marc Iverson and Alan Goldberg, begins to meet. This group later becomes The CFIDS Association of America (TCAA).

Ted Van Zelst, whose adult daughter has CFIDS, becomes the first person to testify before Congress requesting research funds for the illness. His congressman, John Porter, becomes a strong supporter of CFIDS issues.

1988                             

The Centers for Disease Control (CDC) publishes the first official case definition in the Annals of Internal Medicine.

The National Institute of Allergy and Infectious Diseases (NIAID) reports that 25 percent of the calls taken by their communications office are about CFIDS. Only AIDS has a higher volume of calls.

1989                             

Television show “The Golden Girls” features episodes detailing a main character’s diagnosis with CFIDS. TCAA is flooded with more than 10,000 requests for information.

1990                             

Virologist Elaine DeFreitas, whose research is partially funded by TCAA, theorizes link between CFIDS and mystery virus, but CDC disputes her findings. Her work is never completed.

Newsweek cover story on CFIDS becomes 1990’s highest-selling issue.

1991                             

Dr. Mark Demitrack of NIH finds low cortisol levels in CFIDS patients, indicating an endocrine abnormality.

First CFS Cooperative Research Centers funded by NIH.

1992                             

First international research and clinical conference sponsored by the American Association for Chronic Fatigue Syndrome (AACFS) is held in Albany, N.Y.

1993                             

CDC holds meeting to help clarify issues surrounding definition of CFIDS, while TCAA begins to publicly question the agency’s use of budget, staff for CFIDS research.

*Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) is also called chronic fatigue syndrome (CFS)

1994                             

First observance of CFIDS Awareness Day, on May 12.

CDC revises, loosens CFIDS research definition, retains the name “chronic fatigue syndrome.”

New case definition published in the Annals of Internal Medicine.

International soccer star Michelle Akers is diagnosed with CFIDS. She continues to play, but talks openly about her intense struggle with the illness, which causes her to collapse on the field and require intravenous fluids during the game.

1995                             

Johns Hopkins medical researchers find link between CFIDS and neurally-mediated hypotension (NMH), a condition in which the blood pressure falls when it should rise.

First congressional briefings about CFIDS held.

The U.S. Department of Health and Human Services (HHS) adds patient advocates to CFS Coordinating Committee (CFSCC). The group previously consisted only of representatives of federal agencies involved in CFIDS research.

1996                             

Temple University researchers find possible medical breakthrough in RNase L enzyme dysfunction, which might be a diagnostic “marker” for CFIDS. RNase L fights infection by degrading viral genetic material.

Congress asks the Secretary of HHS to consider renaming CFIDS. CFSCC is made an official advisory body composed of health agency staff and seven physicians and patient advocates.

Social Security Administration (SSA) officials admit to TCAA that some people with CFIDS (PWCs) have been unfairly denied benefits, form study group with Association.

Osler’s Web, a nine-year research effort about the history of CFIDS written by Hillary Johnson, is published, renewing concerns about the government’s poor early response to the illness.

1997                             

CDC publishes four-city surveillance data on CFIDS, collected 1989-93, which reinforces “yuppie flu” myth and shows a low prevalence rate, despite having collected newer data that shows CFIDS to be more widespread. Association and advocates protest that the study is outdated and misleading.

HHS broadcasts a physician education program on CFIDS via satellite that educates nearly 1,500 health care providers.

1998                             

CDC administrator Dr. Brian Mahy is accused of diverting CFIDS research funds by CDC’s lead investigator for CFIDS research, Dr. William Reeves, who brings evidence to Congress under protection of the Whistleblower's Act and with help from TCAA. Inspector General (IG) commences audit.

British working group is formed to address CFIDS clinical questions.

Dr. David Bell and Dr. David Streeten link low blood volume to CFIDS.

A code for CFIDS is included in the U.S International Classification of Diseases (ICD), version 9, under the category of “Signs, Symptoms and Ill-Defined Conditions.”

1999                             

The CDC’s misuse of $12.9 million in CFIDS funds is confirmed by IG’s investigation; the agency issues a public apology. GAO begins independent investigation of the CDC and NIH. CDC responds to IG report and Congress agrees to restore misspent CFIDS funds over the next four years. SSA recognizes CFIDS as a potentially disabling condition.

DePaul University researchers publish a report in the Archives of Internal Medicine that as many as 800,000 adults nationwide may suffer from CFIDS, twice the number previously estimated by the CDC. The study data shatters the previously held “yuppie flu” myth.

2000                             

GAO investigators report deficiencies in federal CFIDS programs. Congress gives recommendations for remedial measures to Secretary for Health Donna Shalala. Dr. Brian Mahy is “reassigned” to new duties at CDC.

Coordination of the CFIDS program at NIH is reassigned from NIAID to the Office of the Director, initiating more interdisciplinary involvement in the study of CFIDS. NIH holds “state of the science” consultation and conference on CFIDS.

CDC convenes case definition workshop to explore the challenges of defining/studying CFIDS. A name change workgroup formed by the CFSCC begins attempt to identify alternate name(s).

TCAA holds first in series of four symposia designed to reinvigorate research on the illness, which examines possible connection with autonomic nervous system dysfunction.

SSA starts using code 9330 for cases where CFIDS is the primary impairment. Reports from patients and attorneys indicate more cases are being approved at earlier stages in the review process.

Announcement is made that CFIDS will be listed under “Neurological Diseases” in the U.S. ICD version 10 instead of under “Signs, Symptoms and Ill-Defined Conditions.”

TCAA begins CFIDS primary care provider education project in partnership with the Health Resources and Services Administration (HRSA), CDC, and Illinois Area Health Education Center.

Michelle Akers retires from international competition and the US women’s Olympic soccer team. She cites her constant battle with CFIDS as one of the reasons for her resignation.

2001                             

TCAA conducts first U.S. survey of medical experts’ attitudes toward and beliefs about CFIDS to determine barriers to diagnosis and treatment.

“I Remember Me,” a documentary film on CFIDS written, produced and directed by PWC Kim Snyder, wins awards at several film festivals and gains critical acclaim.

Australian researchers discover a genetic mutation they believe may explain what causes CFIDS. The mutated gene regulates production of cortisol, a hormone that affects immune response.

Second and third of TCAA’s research symposia are held, focusing on the neuroendocrine and immune aspects of the illness.

CFSCC workgroup proposes changing name of illness to Chronic Neuroendocrineimmune Dysfunction Syndrome and solicits comments from the patient community and health care providers.

PWC Laura Hillenbrand writes best-selling book “Seabiscuit: An American Legend” and uses her newfound fame to talk publicly about CFIDS.

2002 

TCAA releases first public service announcement, featuring former Surgeon General Dr. David Satcher.

The Association tightens its research grantmaking policies and announces three new awards for pilot projects.  Public policy initiatives are focused on boosting an anemic CFS research portfolio at NIH and building support for CDC’s CFS research program post “payback” of funds restored following the funding scandal.

Short track speedskater, PWC and 2002 winter Olympics competitor Amy Peterson uses her media platform to talk about her illness.

The New Jersey Chronic Fatigue Syndrome Association (NJCFSA) helps create and distribute the first manual on primary care and treatment of CFIDS in partnership with the state’s academy of medicine and department of health.

The Association is selected by the CDC to lead efforts aimed at teaching health care providers how to diagnose and manage CFIDS. The Association will receive more than $500,000 for each of the next five years to host trainings, exhibit at health care conferences, sponsor educational events and promote understanding of CFIDS in the medical community. The multi-year award represents the largest grant ever made for CFIDS education.

2003

Laura Hillenbrand’s essay about her experience with CFS is published in the New Yorker and wins the National Magazine Award for best essay. Release of the film, Seabiscuit, puts her in the media spotlight and she does scores of interviews about the book and her struggle with CFS.

The National Institutes of Health hosts a scientific conference on “Neuroimmune Mechanisms and Chronic Fatigue Syndrome.” A special Request for Applications is promised to follow as a means of stimulating research in this area.

The newly constituted CFS Advisory Committee is convened by Secretary for Health Tommy Thompson under a new charter for the first time on Sept. 29.

Readership for the CFIDS Association of America’s monthly electronic e-newsletter, CFIDS Link, introduced in late 2002, grows to 16,000 by year-end.

Association-led provider education activities expand in scope, with an information exhibit at national provider conferences and peer-training sessions to develop a cadre of qualified speakers about CFS.

2004

The Association honors Laura Hillenbrand with an Oscar Night benefit to celebrate “best Film” nominee “Seabiscuit.”

The Association’s Grassroots Action Center is launched in April to provide advocates an easy-to-use tool to send lawmakers, public health officials and the media coordinated messages about CFS. More than 10,000 messages are generated with the first campaign.

Four new pilot research projects are selected for funding by the Association, with support totaling $280,000.

The CDC sponsors a workshop, Integrating Disparate Data to Simulate Lymphocyte Function, at Cold Spring Harbor Laboratory on September 19-22, 2004 to discuss current knowledge concerning lymphocyte function and to identify means by which computational modeling could be used to understand CFS. This is CDC’s second Cold Spring Harbor Laboratory meeting on CFS.

Work with CDC toward a public awareness contract begins with focus group research of health care professionals’ attitudes about CFS.

2005

The Association launches a new regional seminar series, the “kNOw MORE” Education and Empowerment program, on June 25 in Reston, Virginia. A second seminar is held in Charlotte, NC on Nov. 14.

The Association marks its 13th annual Lobby Day with 75 participants.

The National Institutes of Health releases a Request for Applications with $4 million in set aside funds for successful CFS proposals.

The first CFS grand rounds presentation is held at University of California-Davis, a collaborative effort of CDC and the CFIDS Association.

CDC initiates the CFS Computational Challenge, assembling 4 interdisciplinary teams of researchers to examine a large, multifactoral dataset compiled during a 2-day clinical study of CFS. Teams convene in Atlanta in March to receive the data and in September to present their independent approaches and findings.

The CDC assigns responsibility for developing the CFS public awareness campaign to its newly established National Center for Health Marketing and staff work with the CFIDS Association to conduct further research about public and provider knowledge of and attitudes about CFS.

2006

The national awareness campaign is announced to the CFIDS community in March, with activities beginning in June, including ads in national magazines and a pilot distribution of a TV public service announcement titled “Missing My Life.” A traveling exhibit of professionally photographed patient portraits, “The Faces of CFS,” debuts at the Mall of America in August and a November 3 press conference with CDC Director Dr. Julie Gerberding yields expansive media coverage.

Two additional “kNOw MORE” programs are held: May 20 in Akron, Ohio and Oct. 28 in Sacramento, California. The Sacramento program draws 280 participants and generates substantial regional media coverage.

The Association publishes and widely distributes a special double-issue of the CFIDS Chronicle cataloging the science and research of CFS, as well as promising avenues of future research.

The CDC’s CFS Computational Challenge (see 2005) yields 14 peer-reviewed articles published in a single issue of Pharmacogenomics. A special media briefing by Dr. Gerberding about the unique effort and the finding of gene activity profiles characteristic of a subset of CFS cases garners coverage in lay and science press.

The Association makes four new pilot grants with total funding of $250,000. These grants bring the total of Association-supported CFS research to more than $4.7 million, the largest source of CFS research funds aside from the federal government.

The Association reaches more than 1,300 health care professionals with credible, up-to-date information about CFS through self-study courses approved by the CDC for continuing education credit.

The federal CFS Advisory Committee meets three times, April 24, July 17 and November 20-21. The Association’s work on Capitol Hill and with the Department of Health and Human Services contributes to the renewal of the committee’s charter and redoubled efforts from DHHS staff to make the committee more effective. 41 members of Congress wrote to Secretary Leavitt expressing support for the continuation of the committee and response to earlier recommendations from it.

2007

The IACFS/ME holds its biennial conference in Fort Lauderdale, Florida. Among the highlights are CFIDS Association-funded studies at Weill Cornell University showing energy conversion abnormalities in the brains of CFS patients, and at the University of the Pacific documenting biological and biochemical evidence of the physical and cognitive decline that is characteristic of CFS following exertion. Other important findings include potential infectious origins for CFS, unique gene expression and function abnormalities, and brain structure and chemistry differences.

The Association uses new webinar technology to educate advocates about its public policy program and how they can become involved. Two Lobby Day preview programs are held in April and a webinar instructing advocates how to use Town Hall meetings with Congress inspires several to attend local events and puts CFS on the record.

The 15th Lobby Day is held, setting records for both participation and the number of meetings attended, with 80 advocates meeting with 94 representatives of Congress. Materials distributed to Congress include summaries of the November 2006 press conference and a special CFS briefing insert produced by Research!America, an influential Washington-based coalition of health and research organizations.

Two “kNOw MORE CFS” seminars are held featuring nationally known physicians and researchers: in Houston, Texas, on June 9 with Drs. Christopher Snell and Morris Papernik; and on October 13 in Denver, Colorado, with Drs. Suzanne Vernon and Steven Goodman. Additional educational opportunities for health care providers are provided through 17 CFS presentations at universities and medical schools.

In response to Lobby Day advocates’ requests, 49 members of Congress write to NIH Director Elias Zerhouni asking for expanded research into CFS under new authority granted by the 2006 NIH Reform Act.

By July the campaign photo exhibit has traveled to public venues and medical conferences in San Francisco, Sacramento, Houston, Minneapolis, Fort Lauderdale, San Diego, Boston, Philadelphia, Dallas, Washington, D.C., Indianapolis and other cities. More than five million consumers and health care professionals have been exposed directly to CFS education at the photo exhibit and millions more have been exposed indirectly to CFS information through related media coverage.

The CFIDS Association participates in a collaborative meeting of organizations concerned with overlapping conditions such as fibromyalgia, interstitial cystitis, irritable bowel syndrome and chronic pain, providing guidance on how to expand awareness and funding that benefits patients with one or several of these disorders.

Dr. Brigitte Huber of Tufts University is awarded a research grant to study a retrovirus, HERV-K 18, as a risk factor for postviral CFS. The grant is funded by the NIH’s National Institute of Arthritis and Skin Diseases and the Office of Research on Women’s Health based on data collected during a 2004-06 pilot study funded by the CFIDS Association. If fulfills one of the main goals of the Association’s research program – to help promising investigators with pilot studies that can lead to larger studies funded by the NIH or biotech firms.

Plans to hire a full-time scientific director come to fruition with the announcement that Dr. Suzanne Vernon, formerly of the CDC, is joining the CFIDS Association. Dr. Vernon is devoting her time and talents to fostering a more robust CFS research program and accelerating the pace of progress. A $1 million campaign is launched to fuel the expanded research program.