Timeline of Key CFIDS* Events
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from cfids.org
Timeline of Key CFIDS* Events |
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from cfids.org |
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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 inLake Tahoe, 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).
An Illinois man whose 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. 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.
DePaulUniversity 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 IllinoisAreaHealthEducationCenter.
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.
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.
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