What’s in a Name?
By Marcia Harmon, Director of Communications

In Romeo and Juliet, Shakespeare asks “What’s in a name? That which we call a rose by any other name would smell as sweet.” In the CFIDS community, we have been struggling with the question of what impact changing the name chronic fatigue syndrome (CFS or CFIDS) to another name would have on the illness. Would it still “smell as bad”—have as little respect and legitimacy—as many believe it does now?

The question, of course, is far more than rhetorical. Many people are convinced the current name has detrimentally affected public perceptions and research dollars for this illness. The name chronic fatigue syndrome is so woefully inadequate and so misleading that it has generated disdain in the patient community and confusion among the general public since it was first coined. It’s no wonder, then, that the belief that a more medical- sounding name would improve perceptions, and the social and scientific context, of this illness is widespread in the patient community.

One contingent in the CFIDS community favors a name change to ME or myalgic encephalomyelitis. ME advocates are filling listservs, chat rooms and support group meetings with their reasoning—some sound and some questionable. The argument is complicated by the fact that some ME advocates believe myalgic encephalomyelitis (brain or spinal cord inflammation) is the correct term for ME, while others prefer myalgic encephalopathy (which emphasizes the brain, but doesn’t connote inflammation). Still others, including most in the research and medical arenas, believe both terms are incorrect because they emphasize brain dysfunction when the pathophysiology of the illness has yet to be determined. This contingent believes changing to a brain-central term would steer research away from other promising tracks that don’t point to neurological etiology.

We’ll take a look at ME advocacy in the next issue of the Chronicle. In this issue, we’d like to share the results of a questionnaire the CFIDS Association sent in September to the subscribers of our e-newsletter, the CFIDSLink, who live outside the United States. We wanted to examine what ordinary CFIDS patients and doctors—as opposed to activists or people affiliated with a patient organization with a name change agenda—think of the name and how they think the name has impacted the way providers and the general public view the illness and how their government has responded to it.

More than 10 percent of our foreign subscribers have responded to the questionnaire so far, and the feedback is fascinating. For instance, perceptions are clearly impacted by personal experience. Some respondents in Canada, for instance, fervently believe that most doctors still think the illness is psychological, while other Canadians are convinced that attitudes have changed and that most providers in that country believe the illness is physiological. Interestingly, about a third of the respondents worldwide support the name ME, a third don’t like ME and a third don’t think the name matters and believe efforts should focus on educating people about the illness instead of a name change.

Another surprising finding is that support for the name ME is higher among people in countries where that name has never been used. There seems to be a “wishful thinking” dynamic that makes them convinced that a more medical-sounding name would improve the way the general public, providers and government  agencies treat CFIDS patients. But that hasn’t been the case for many patients in other countries, as you will see in our coverage of survey results, which begins here and continues in the January issue of the CFIDSLink. If you’re not a subscriber to the Link, visit http://www.cfids.org/subscribe.asp, send a message to cfidslink@cfids.org or just call us today at 704-365-2343 and we’ll sign you up for this free newsletter.

“The illness is usually called ME here, but there is still a certain stigma attached to this disease. It doesn’t generate the same respect as other illnesses such as MS. Most doctors view ME as a physical   illness here in Ireland. My own doctor has been amazing. I was his first patient with ME and he has had to learn all about this illness. I have given him a lot of information over the years, especially from the Chronicle.

“Among the general public, some people still have the attitude that it’s all in my head. I don’t think that will change until we know what causes ME. I have lost some friends. They were very insensitive, and so I decided I didn’t want toxic people like them in my life.”

                                                             —Caroline Sweeney, Ireland

“Personally, I have no problem with the term CFS. I think the way the media, medical practitioners and other professional bodies portray the illness is more important than giving it a serious-sounding medical name. I refer to the illness as CFS rather than ME, although I have friends who insist on the name ME. I have found that most people have at least heard of CFS and have some limited understanding that it’s a nasty illness.

“In my experience, when medical practitioners have a good understanding of CFS, they are extremely supportive and helpful. Those who know every little about the illness seem to regard patients with skepticism and suspicion. I was told by one medical doctor that when he went to medical school, CFS did not exist. He implied it still doesn’t.

“Due to the illness, I made a move from Brisbane, with a population of three million, to a more relaxed and healthy rural area in Queensland around four years ago. I approached one of our local doctors for assistance when I had a relapse. He has been extremely supportive, has not made me feel as though it’s all in my head, has assisted me in any way possible and has supported me in making a claim for the disability pension.”

                                                —Carolyn Gee, Australia

“It is called CFS or ME here in Canada. Neither name gets more recognition or respect than the other. ME seems too technical for people to understand, and CFS makes most people just assume it’s a fancy name for being lazy. There’s quite a stigma attached to this illness here, no matter which name is used. Maybe through further education that stigma will be eliminated.

“It’s true that you find out who your real friends are when you are ill. People don’t understand, and they think you’re just being lazy. Everyone has a quick-fix idea they think you should try. They don’t understand the complexity of this syndrome. I have lost a number of acquaintances because of CFS. I can’t even call them friends because if they were true friends, they would still be here trying to understand.”

                                     —Shelley Whiting, Canada

“I have been ill for 10 years. I live in Ecuador in South America. Most doctors don’t know this illness exists. I have asked several doctors what’s wrong with me and they think I am faking and not really ill. I am treated like a mentally disabled person here. I feel very angry and want to scream, ‘Please, somebody help me!’

“The government doesn’t help citizens here, much less those with a disease they don’t know about. My parents are giving me economic help because they are able to, but when they can’t help anymore, I will be in the street. That’s why I’m desperately seeking help outside this country and why I am contacting the CFIDS Association.”

                                                            —Carmen Alicia Ripalda Quevedo, Ecuador

“The illness has gone from being called ME in the late ’80s and early ’90s to the name CFS. ME was seen as the ‘yuppie disease.’ There wasn’t much information available about it.

“I have actually given up on mainstream doctors in the U.K. They seem to shrug their shoulders and say, ‘Sorry, there is no cure.’ You are very much on your own. There are some so-called specialists, but I have spent so much of my own money with various healers, all of which amounted to nothing.

“Government benefits are given, but patients have to convince a separate panel of doctors of their disability. I had my money revoked by such a board because ‘I sat comfortably in my seat and had good eye contact with the doctor’ while he interviewed me. They look for any excuse to stop paying you. I know of some people in the U.K. who have lost their homes because of this. When you are ill you need support! The system stinks!

“All in all, I’m not looking for help in this country. I think the U.S. will become the real pioneer for this disease, and then it will gradually filter over to Europe. But if it’s going to cost money, forget it; the British government has no interest in spending money in the health sector!”           

                                                            —Kevin O’Sullivan, United Kingdom

“I always use the term ME since it is a much better name than CFS. I think it gives the illness more credibility and reflects the serious nature of the disease. The name CFS trivializes the condition in my opinion. I would do anything to just be fatigued!

“It is the general public I have had misunderstandings with, not doctors. I am lucky to have Rosamund Vallings as my doctor, who is wonderful and very knowledgeable about ME. She gives free talks regularly and is very supportive. I think with other doctors it varies, but I would say ME is recognized as an illness of physical origin more nowadays.”

                                                            —Claressinka Anderson, New Zealand    
                                           

“Most doctors in Bogota don’t really know what CFIDS is. I’m a doctor myself and had to live the nightmare of the ignorance of most specialists about my condition. I have not yet met a single doctor who understands and treats the problem from an integral point of view. We are seen as the unwanted patients because we don’t get better.

I absolutely know this is a real physical disease which somehow (perhaps a chronic viral infection) wreaks havoc in the neuroendocrine system and the autonomic nervous system, causing a constellation of symptoms. The disease has disabled me, and I only work part-time as a radiologist now.

“The term ME is not known here. I am absolutely sure it would make a huge difference to use it instead of CFS, both from the medical and social point of view.”

                  —Dr. Arturo Velez, Colombia

“As for the name, most people in this country call it fatiga cronica, which is chronic fatigue. Worrying about changing the name to myalgic encephalomyelitis to get more respect is typical American nonsense. Is respect dependent on a name?

“Doctors here don’t know whether its origin is physical or psychological. Some think it has to do with the lymbical system. Personally, I’m not much influenced by doctors because I’ve had very bad experiences with them. I had to find my diagnosis myself and then check with a doctor, who said I was right. So I follow my own knowledge and find the treatment I’m comfortable with—mostly alternative medicine.”

                                                —Sibila Seibert, Argentina

“I’m a practitioner, not a person affected by this illness. Since the name myalgic encephalomyelitis is not accurate, most doctors here don’t like this term. Many health professionals still believe people with ME/CFS have a psychological disease or are malingerers, though attitudes have been changing more rapidly in the past few years. I think some of the problem is due to the fact that many health care workers feel impotent when dealing with this condition.

“The illness is covered by benefits, although securing them is a lottery that those affected by ME/CFS often do badly in compared with people affected by other conditions.”

                                                — Dr. Kelly Morris, United Kingdom