The Search for Satisfaction

Last September subscribers to the CFIDSLink who live outside the United States were asked to share their thoughts about and experiences with myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS or CFIDS) in their respective countries. More than 10 percent of our foreign subscribers replied, and some of their perceptions were shared in the last issue of the CFIDSLink and the CFIDS Chronicle.

Many responses suggest that greater efforts should be focused on education about the illness, leading to increased recognition and respect among the general public, medical professionals, and disability and Social Security decision makers. The questionnaires also indicate that 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. Surprisingly, the results also found that PWCs residing in the same country don't always agree about which name is commonly used among their peers and clinicians.

Our coverage of the questionnaire results concludes in this issue of the CFIDSLink.

"The family doctor I visited for a time in 2002 didn't treat me or my illness with any respect at all. I cried after every visit. The doctor said he didn't know anything about CFS and didn't think it was real.

I don't think the general public gives two hoots about the illness either. I do know that my own parents didn't understand my illness until my mother met and talked with someone else with CFS. That discussion really changed her outlook. She was sorry it took so long to 'get it.'

We call it CFS or CFIDS here. It's my understanding that there is a certain criteria for classification of ME, and that it's called ME when appropriate. A more medical- sounding name may help with the general perception, but I don't think that ME is the right fit."

Bobbi Jo Rushon, Canada

"There are still many doctors in this country (including the head of the Australian Medical Association, who is a psychiatrist) who believe that CFS is psychological and should be treated as such. Fortunately, most doctors I've met believe it's physical in origin. The problem is that most of the doctors have virtually no interest in discussing or trying to treat the illness.

CFS has become recognized for the purposes of welfare payments in Australia. However, I have no doubt that people are still struggling to find a diagnosis and medical support for pension payments. There are still hoops to jump through in the Social Security (Centerlink) department, including an interview by a department doctor. Unfortunately, that doctor may or may not be interested, knowledgeable or sympathetic. It's mainly the younger doctors who are savvy about CFS.

I think the general public is accepting of the disease. There have been a number of high-profile sports figures diagnosed with CFS, so there are frequent media reports on the topic. This knowledge tends to permeate popular culture to a greater extent than it normally would.

Medically and in the media the illness is called CFS, although there are support groups that still use ME."

Marcus Doolette, Australia

"In my experience doctors' views range from understanding the condition to complete ignorance, seemingly based on professional pride because they don't have a treatment for it. The general public seems to know very little about the condition.

It used to be called ME, but is now known as CFS. ME was also called 'yuppie flu' in the media years ago. I'd think that CFS is far better than ME, but people don't understand how sufferers could be tired and fatigued for so long. The term fatigue just doesn't cover the condition. If I didn't suffer from it myself, I doubt if I'd understand it either."

Greg Foster, Ireland

"It's known as CFS and sometimes ME. Neither seems to make a difference. Doctors here realize it's a physical disease, but don't know much about it. They are slow to make a diagnosis and often give very bad advice. We have one doctor who knows a lot about CFS, but she is an hour and a half away by plane, so visits with her are costly and infrequent.

I don't tell people, including my family, what is wrong with me. There are four people who know and believe me."

Liz Smyth, New Zealand

"I was initially diagnosed by my wonderfully supportive general practitioner, who believes it is a physical condition with an unknown cause. Once he diagnosed the condition, he seemed to be at a loss about what to do with me. He did manage to find the only CFS program in Ireland. However, the program is run by a psychiatrist.

Thankfully, my family and friends have been great.

I have heard and use both CFS and ME, which I favor. When I use CFS, people don't realize it's ME and get confused. I feel that my disabilities are taken more seriously when I use ME. CFS gives the impression that I am simply tired all of the time, and the usual response to that is, 'Oh, so am I. Maybe I have CFS.'"

Annette McDonnell, Ireland

"For the most part I've found there's a lot of ignorance in the medical community about ME. My husband's doctor spent 10 years trying rather ineffectively to treat his symptoms. Many of his specialists are more knowledgeable and respectful. They acknowledge that he has a real illness. Due to well-publicized incidences of the illness in Nova Scotia, it seems to be widely recognized by the general public.

In Canada the syndrome is sometimes called ME; however, chronic fatigue syndrome is the name that most people will recognize. I wasn't familiar with the term ME, and I had been a nurse for more than 10 years.

The name chronic fatigue syndrome doesn't fully grasp the meaning of the illness. I find that chronic fatigue syndrome is a misnomer, and I'm glad it is called ME. I've found recently that the name has been thrown around aimlessly by people, who by lifestyle choices find themselves chronically tired. This certainly undermines the credibility of people who are completely debilitated by the condition. I feel that chronic fatigue immune deficiency syndrome is a more credible, all-encompassing term to use, yet it does not seem to address the myofacial pain that often accompanies it."

Teresa McEachern, Canada

"Here it is called CFS or ME. For the most part, doctors here think it is psychological. They don't want to know more about it because they don't understand what's going on with their patients. The general public doesn't know about the illness either.

I don't think the name ME helps people understand the illness. They want to know what's wrong with me and what ME means. To make it simple, I say I have an immunologic disorder. And when I can't participate in social events, I say I have a fever, which anyone can understand."

Benjamin Iricibar, Argentina

 "It's very frustrating that most doctors don't know about this illness. The general public isn't aware of it either. When I explain it to people, they find it hard to believe it's a real illness. My friends and family have been very understanding.

In Norway both ME and CFS are used. Since the illness is not known, people tend not to understand ME. I know that the Norwegian CFS patient organization uses ME, but the few health care providers who are 'experts' in the field use CFS."

Odd Skarheim, Norway