Name Change Efforts Over Time
The chronic fatigue syndrome name has raised hackles in the ME/CFS community since the day it was adopted in 1988. Just how upset the patient community was quickly became clear when Tom Hennessey, a former advertising executive and the fiery leader of the RESCIND advocacy group, bellowed out “Just change the *&%&#@!! name to startled officials at a San Francisco conference in 1989.
Since then two major (and very different) name change efforts have occurred; the federally mandated exploration of the topic by the Name Change Workgroup and a grass roots oriented campaign started by Rich Carson, the founder of ProHealth, in 2008. Below we follow the highlights of these and other efforts to change the name.
Ellen Piro, President of the Norwegian M.E. Association, begins a worldwide petition to get the CFS name changed.
Roger Burns, the publisher of CFS-NEWS, the dominant CFS website at the time, calls for a change of name at the federal advisory committee on CFS, the CFS Interagency Coordinating Committee (CFSCC) in the U.S..
With their opportunities for networking and face to face discussions the International Conferences will come to play an important role in the different Name Change Efforts. At the San Francisco CFS Conference in 1996 Roger Burns leads the first Forum on a Name Change. Many prominent advocates including Tom Hennessy, Kim Kenney, Bonnie Gorman, RN, Gail Dahlen, RN, Katrina Berne, PhD, Gail Kansky, and Gretchen Mason attend.
Kim Kenney (McCleary), the President of the CFIDS Association of America (CAA) and member of the federal advisory committee on CFS (CFSCC) proposes that Roger Burns serve as a consultant to the committee. Dr. Anthony Komaroff, another CFSCC member, and one of the original members of the workgroup that coined ‘chronic fatigue syndrome’ name in 1988, proposes that a Name Change be on the agenda of every CFSCC meeting.
The CAA lays the groundwork for a federally mandated Name Change Workgroup by getting language inserted in the Labor/DHHS appropriations bill requesting that the Secretary of Health form a committee to investigate an alternative name for CFS. Comprehensive lists of alternate names are formed and the first CFSCC workgroup on a Name Change is formed.
An Internet poll of 132 patients finds myalgic encephalomyelitis the clear favorite among the patients with 2 ½ times as many votes as Ramsey’s disease, the next choice.
A random survey of 120 CFIDS Association of America (CAA) members in 1997 indicates that 70% wanted the name changed immediately. This time myalgic encephalomyelitis (40%) and myalgic encephalopathy (39%) receive equal support with neuromyasthenia close behind (30%) in a survey of acceptable names.
Kim Kenney (McCleary) of the CAA proposes, and the federal advisory committee on CFS (CFSCC) accepts, a plan to form an Name Change Work Group. Meanwhile a 1998 Internet poll by CFS-News of 668 patients indicates that myalgic encephalopathy (47%) and myalgic encephalomyelitis (20%) are top choices in the patient community.
The 1998 Boston International AACFS Conference on CFS features a separate Name Change Session lead by Dr. Anthony Komaroff of Harvard University and Vicki Walker of the CFIDS Association of America. Many prominent advocates and leaders including Tom Hennessey, Pat Fero, John Herd, Dr. Albert Donnay and Mary Schweitzer speak. The reportedly negative results a Name Change survey distributed to physicians and researchers by Kim Kenney (McCleary suggests the Name Change Effort is largely patient driven. In a surprise announcement, former Asst. Secretary of Health and Rudy Perpich Award winner Dr. Arthur Lee becomes the first prominent outside figure to call for a name change.
The US advocacy group RESCIND publishes an online petition calling for CFS to be renamed myalgic encephalomyelitis.
Overseas Ellen Piro and Anna-Louise Midsem, Vice President of the European M.E. Associations Alliance, reprise their call for a new name at the Brussels Name Change Forum in December, 1999. Noting differences between the definitions for ME and CFS they propose renaming CFS to indicate it is an ‘atypical’ form of M.E or ‘ME-like”
The Name Change Workgroup (CFSCC)
The wheels of the government move slowly but four years after it was first proposed plans for a federally authorized working group finally come to fruition as the CFSCC creates a Name Change Workgroup (NCW) consisting of patients/advocates, clinicians and researchers (John Herd, Leonard Jason, Ph.D., Daniel Kahn, M.D., Kim Kenney, Nancy Klimas, M.D., Charles Lapp, M.D., Carol Lavrich, Susan Levine, M.D.and Arthur Lawrence, Ph.D). The Workgroup will assess the effects of the current name, the pro’s and con’s of changing the name, the state of the science regarding CFS, and possible alternative names. The Workgroup first meets during the State of Science CFS Meeting in October, 2000 and draws up criteria for a successful name change.
The CFSCC agrees to devote a full day at its next session to assessing the opportunities and costs associated with a Name Change. Shortly thereafter, however, the CFSCC will go into dormancy for 2 ½ years as it metamorphoses into a full Department of Health and Human Services (DHHS) advisory committee. During that time the Name Change Workgroup will continue to gather information but will be handicapped by its inability to confer and interact with the Committee. Ultimately it will fall short of its goals to fully assess the Name Change question.
A Name Change Forum is held at the 2001 International CFS Conference in Seattle. Dr. Nancy Klimas’s poll of physicians at Conference suggests a shift has occurred as Roger Burns reports that most physicians now support a name change. The Name Change Workgroup distributes a questionnaire asking CFS patients to comment on four names; myalgic encephalopathy, neuroendocrineimmune disorder (NEID), polyalgic neuroasthenia and Ramsey’s disorder.
The survey indicates the research community demonstrates the highest resistance to a name change with just over 50% in favor of one. ‘NEID’ and ‘ME’ (referring to myalgic encephalopathy) receive the highest percentage of positive votes with the patient community favoring ‘NEID’ and the research community ‘ME’. While the CFS community clearly desires a different name the survey suggests little unity exists with regard to which name is appropriate and that strong resistance to any particular name will be present in some part of the CFS community
The first research paper incorporating both ‘ME’ and ‘CFS’ – calling the disease ME/CFS or CFS/ME – is published.
*Nine percent of research papers cited by PubMed on chronic fatigue syndrome in 2002 have ME/CFS or CFS/ME in their titles.
A study by Dr. Leonard Jason indicates the term ‘chronic fatigue syndrome’ causes disparaging attitudes towards the disease in the medical community and negatively impacts the care patients receive.
The CFSCC is reconstituted with new members as the Chronic Fatigue Syndrome Advisory Committee (CFSAC). After extensive investigations and outreach to the patient, research and clinician communities the Name Change Workgroup presents its recommendations to the CFSAC in September, 2003. RESCIND presents their petition to call the disease myalgic encephalomyelitis to the NCW; it has over 6,000 signatures.
Proposing that the disease be called ‘neuroendocrineimmune dysfunction’ (NDS) the Workgroup calls for a broader and more inclusive construct for CFS than has been developed before. Noting the inability of the Fukuda definition to differentiate some of the ‘classic symptoms’ of CFS such as post-exertional fatigue, the NCW proposes that four subgroups (myalgic encephalomyelitis, Fukuda criteria, Canadian Consensus Criteria, Gulf War Syndrome) be formed and studied. They call for an extensive multi-agency effort to incorporate the name change into the public and research arena.
On Dec. 8, 2003, citing a lack of scientific clarity regarding the disease and the possible negative effects of a name change with regard to research funding and disability and other considerations ten of the eleven CFSAC members vote not to take up the Name Change Workgroup’s recommendations. Without the endorsement of the CFSAC the Name Change effort – a federally mandated effort – dies. Many patients react in dismay.
An international team of physicians/researchers unites basic aspects of myalgic encephalomyelitis and chronic fatigue syndrome to create a new clinical definition of the disorder: the Canadian Consensus Definition. They refer to the disease as ME/CFS.
An international team of researchers/physicians under the aegis of the American Association of Chronic Fatigue Syndrome (now IACFS/ME) creates the first Pediatric Definition of the disease. The Pediatric Definition also unites basic aspects of myalgic encephalomyelitis and chronic fatigue syndrome and also refers to the disease as ME/CFS.
The Name Change Campaign
In August of 2006 Rich Carson, the founder of Prothealth.com devotes his monthly Founders Corner column to the question of whether its time to start to new Name Change Campaign. The overwhelming response convinces him to start a grass-roots effort encompassing patients, advocates, physicians and researchers.
Demonstrating how inclusive the Canadian Consensus Definition (CCD) is, U.K. M.E. advocates protest the decision to use the older London definition of myalgic encephalomyelitis instead of the Canadian Consensus ME/CFS Definition to diagnose myalgic encephalomyelitis patients in the PACE trials.
The roadmap to a new Name Change effort begins when Rich Carson co-chairs a Chronic Fatigue Syndrome ReNaming Meeting at the Whittemore-Peterson Fundraising Gala in Reno, Nevada in Sept. A broad array of prominent ME/CFS professionals (Drs. Dan Peterson, Nancy Klimas Charles Lapp, Kenny De Meirleir, Konnie Knox, Chris Snell, Mark Van Ness, and Judy Mikovits) and representatives from support groups and Foundations (CFIDS Association of America – Dr. Katrina Berne, Wisconsin CFS Association – Pat Fero, the HHV-6 Foundation – Annette Whittemore, CFSAC -Staci Stevens) attend.
With Dr. Klimas leading an overview of the ups and downs of the prior Name Change effort a general agreement is reached that new name change effort should retain but minimizes the ‘chronic fatigue syndrome’ name in order to provide stability for people with disability and in the research field.
*Eight percent of papers cited by PubMed on chronic fatigue syndrome in 2006 have ME/CFS or CFS/ME in their titles.
At the International IACFS Conference in Miami, Florida Rich Carson forms a Name Change Advisory Board consisting of eight prominent physicians and researchers (Drs. Lucinda Bateman, Paul Cheney, David Bell, Leonard Jason, Nancy Klimas, Anthony Komaroff, Charles Lapp, and Daniel Peterson). The Board recommends that chronic fatigue syndrome be called Myalgic Encephalopathy- chronic fatigue syndrome or ‘ME/CFS’.
At the same conference the International Association of Chronic Fatigue Syndrome votes to change its name to IACFS/ME (2007). The annual Invest in ME London Conference is now termed the International IiME ME/CFS Conference.
In October citing the need for unity in the patient population the Name Change Advisory Board amends its proposed name dropping ‘myalgic encephalopathy’ and leaving ‘ME’ to refer to either myalgic encephalopathy or myalgic encephalomyelitis.
*Ten percent of papers cited by PubMed on chronic fatigue syndrome in 2007 have ME/CFS or CFS/ME in their titles.
The Name Change Campaign opens its website in February, 2008 sparking much discussion in the U.S. and Europe. The CDC weighs in against the Name Change Campaign on its website citing differences in the symptoms and definitions of myalgic encephalomyelitis and chronic fatigue syndrome.
The Invest in ME London conference is again called the International IiME ME/CFS Conference. In October, stressing the need for unity, Invest in ME endorses ME/CFS and calls for support groups to band around the ME/CFS name.
In August the Whittemore-Peterson Neuro-Immune Institute –founded by Fair Name Campaign member Annette Whittemore – opens its website revealing a research program on the par with the CDC and NIH efforts….and an emphasis on using ME/CFS. For more on the WPI click here.
Prohealth, the mostly highly ranked ME/CFS organization on the internet, provides a substantial boost to the Campaign For a Fair Name when the Prohealth website goes entirely ‘ME/CFS’.
One of the oldest support groups on the internet, the Wisconsin CFS Association, votes, after over 20 years of calling itself CFS, to call itself the Wisconsin ME/CFS Association.
The first social networking site devoted completely to this disorder ME-CFSCommunity.com opens
*Ten percent of research papers cited by PubMed on chronic fatigue syndrome in 2008 have ME/CFS or CFS/ME in their titles.4 comments