...Plenty, according to many people who are of the opinion that the name CHRONIC FATIGUE SYNDROME trivialises the illness. Moves are afoot in America for there to be a name change. Marc M Iverson, President and Founder of the CIFDS Association of America, discusses the issues in his editorial "Founder's Forum" in the November/December 1998 edition of The CIFDS Chronical.

Back in early 1988 when the CFIDS Association was "of Charlotte, NC" rather than "of America", the Centre for Disease Control was just settling on "Chronic Fatigue Syndrome" as the name for our illness. At that time I wrote an article in our newsletter explaining why we chose CFIDS instead.

At a national convention in Portland, prominent cancer epidemiologist Dr Seymour Grufferman objected to the name CFS/ME saying "I think you are not going to get a good shake if you call yourselves the Chronic Fatigue Syndrome population because that carries with it a judgement. It just goes against our Protestant work ethic - oh, they just get tired easily."

We agreed. We felt the name CFS/ME was too broad, politically unsound and trivialising. It sounded psychosomatic and would not be taken seriously by the public or by professionals reviewing medical and disability claims. Already, medical research had suggested that this was a disease of immune dysfunction, and we believed the name of our illness should reflect the current state of medical knowledge. Dr Grufferman suggested CFIDS and we adopted it.

We were among the first to reject CFS/ME as an appropriate name for our illness, taking a leadership position that we have never relinquished. At this month's conference of the American Association for Chronic Fatigue Syndrome in Boston we co-hosted a forum at which advocates could discuss options and raise difficult issues that must be considered in changing the name. And the following day, at the Federal Government's CFS/ME Co-ordinating Committee meeting our executive director, Kim Kenney, was given responsibility for surveying international CFIDS leaders to help the committee decide how it might move the name change process forward.

As it turned out, we were right about the impact the name CFS/ME would have. The damage to our health and lives has been documented by many of you in articles and letters for The Chronicle. And while we have had some success in overcoming the stigma of the name, we have had no success in changing it.

Unfortunately, while much has been learned I over the years, not enough is yet known to give a solid basis to a new name that can be accepted in the US and around the world.

That problem was reflected in some of the comments at the Name Change Forum this month. Gail Dahlen, who represents Medical Professionals/Persons with CFIDS said we must be careful in choosing a new name; we can't afford to make another poor choice.

Dr Charles Shepherd of the ME Association of England agreed that we need a name we can keep, not one that would need to be changed again.

And my fellow CFIDS Association of America board member, John Trussler, argued for waiting until more is known about the etiology of the illness so we can take advantage of the educational opportunities that a name change would afford. John's personal comments were in sync with a statement adopted by the board earlier this year.

We hate the name CFS/ME but we must be responsible in our efforts to change it. An eponym is a possibility but we are more likely to gamer support for a name derived from science. For that reason, the Association's commitment to finding research and advocating for more government research to uncover the mysteries of this horrible illness may still prove to be our most effective leadership in the name change issue.

As I hear from those who were able to attend the conference and the Co-ordinating Committee meeting, I am encouraged that we are finally moving closer to a name that will bring respect and understanding to those of us who struggle with an illness far more vicious than "chronic fatigue".

The November/December 1998 issue of the CFIDS Chronicle also contained the following report on the Name Change Forum at the Boston conference which enlarges upon points brought up in Marc M Iverson's editorial.

Dr Philip Lee, the respected former US Assistant Secretary of Health and Human Services gave the equivalent of an electric shock therapy to the movement to scrap the name "chronic fatigue syndrome" in favour of something else less polarising, less trivialising.

On Saturday afternoon when he was presented with the Gov. Rudy Perpich Leadership Award, Lee made a compelling argument for changing the name of the illness even before scientific research resolves questions about just what the illness really is.

"I believe it is time for a change in the name CFS/ME," Lee told a surprised audience that was spending the day listening to inconclusive but provocative reports of studies that attempted to hone in on the basis of the illness. Lee said the current name is the result of a committee definition of the illness that "has proven to be useful in some areas, such as prevalence studies" but because most doctors have no respect for the name, it doesn't serve patients well.

"The overlap in symptomatology with Gulf War syndrome, fibromyalgia and multiple chemical sensitivity warrants a thorough examination by the federal government. This illness needs the same kind of focused attention as being put into AIDS" Lee said. "I don't know that we'll get $1.7 billion (as is spent on AIDS research), but we should get more than the $ 10 million that is being spent on the illness now."

"We need to move forward. We need to get on with it", he said.

The CFIDS Association of America sought to move it forward by co-sponsoring with the AACFS a forum held on the Monday evening at the close of the conference. Of the 12 US patients who made formal statements, nine urged an immediate change in the name. Janet Dauble suggested environmental illness and Albert Donnay proposed multi-sensory sensitivity syndrome. Nancy Solo said the new name should incorporate brain disease. Pat Fero said scientists should choose a name, while John Herd suggested a summit format to select a new name.

On the other hand, Bobby Mulligan urged leaders of the two associations to focus on educating physicians with the current name and John Trussler urged a delay until more is known about the etiology of the illness to take advantage of the educational opportunity afforded by a name change.

During the conference researchers and clinicians were asked to complete a survey for their input on the issue. Researchers tended to feel the name was not a hindrance to them, while clinicians felt the name did make it more difficult for them to obtain appropriate specialist care for their patients, to get third party reimbursement for their own services and to assist their patients with disability issues.

On the morning following the Name Change Forum the Department of Health and Human Services CFS/ME Co-ordinating Committee picked up the momentum and assigned the CFIDS executive director Kim Kenney to survey representatives of the international community about renaming CFS/ME.

The issue remains a difficult one, as Dr Anthony Komaroff of Harvard Medical School told The Boston Globe:

"There's unanimity on one point: the current name is really bad because it trivialises the illness, but we don't know enough to choose the right name. And we'd damn well better get it right and be prepared to live with it for the next decade."

From Emerge Autumn 1999.