Patients speak out!
By Elisabeth A. Crean

A valuable and engaging new feature this year was a panel presentation called "Living with CFS: Voices of Patients." The forum took place twice, at the beginning of Sunday's clinical conference and just after the start of Monday's patient conference. The presenters tailored their remarks for the different make up of the audience each session, speaking primarily to doctors on Sunday and to patients on Monday. Placing this panel early in both sessions conveyed the important message that everything begins with listening to the patient.

Wilhelmina Jenkins of Atlanta, physicist, patient, CFIDS Association of America treasurer and recent guest on "Oprah," spoke both days. At the clinical conference, she called for mutual respect between doctors and patients, calling them "comrades in arms" in the struggle against CFS. She cited the need for caring, informed doctors working in partnership with patients. This applies to individual doctor-patient relationships, where the doctor must recognize how important it is for the patient to be able to tell her story, and between the medical and patient communities, where collaboration is critical to advancing research and treatment.

Jenkins also urged doctors to reach out. Remember the children, she said, "felled, terrified, even suicidal" with CFS, and reach out to school counselors and administrators to help them. Reach out to doctors in poor communities, who are already overwhelmed. "If CFS can wreak havoc on a secure, middle class family, think about those who are just scraping by." It was a touching and painful reminder that those doctors and patients who could afford to be there in a hotel ballroom represented a small elite segment of the larger struggle.

Marian Sonnenfeld of Massachusetts, a doctor, patient and poet, echoed Jenkins’ call to "create an empowering doctor-patient alliance." She shared with the doctors how she manages her illness by integrating traditional and alternative therapies. Acupuncture, massage and physical therapy have helped control pain, while meditation assists in separating fatigue and pain from the emotions caught up in them. Mindfulness, an awareness-centered approach to stress reduction based on Jon Kabat-Zinn’s writings, helps Sonnenfeld notice and delineate her limits, and "feel more alive, even if I’m just watching TV or reading a book." She also reminded the audience of the trivializing impact of the name chronic fatigue syndrome. "It’s like calling diabetes chronic thirst syndrome."

The demeaning name can add to the sense of shame about having CFS, according to Jan Montgomery, a trailblazing patient-activist from California. To overcome this, she urged patients to "think of yourselves as heroes," and doctors to "act like pioneers." Stop looking around, she said, because "we are in front of the parade, on the cutting edge of an extraordinary field that will open doors to many immunological diseases." Montgomery gave the audience the benefit of both her experience and her optimism. "The struggle is long," she said, "but hope is longer."

The inspirational tone continued with Monday’s panel at the patient conference. Jenkins, Montgomery and New Jersey CFS Association (NJCFSA) President Jon Sterling shared empathy and encouragement with their fellow patients. All advised that patients combine their limited energy to support each other and advocate for change.

"We struggle together to reclaim our lives," said Jenkins. While each of us has felt individually diminished by CFS, "by standing together we have a voice." She reminded the attendees to return home and share what they learned at the conference with other patients, keeping especially in mind those who don’t have good access to information or treatment. Echoing a common theme among patient leaders, Jenkins said she "refound" herself through volunteering in local and national patient organizations, even when she was working in her nightgown and from her bed. "Our talent as a community is limitless; combined, we can move mountains."

Sterling used another analogy to describe the movement. He described his group as a bunch of ants at a picnic: together, strong enough to carry away the cherry pie. Sterling got into activism because he didn’t want to have CFS anymore. "The only way to get out of this is to get involved." Patients need to take an active role politically. The NJCFSA got a bill passed appropriating funds for a state manual on CFS, as well as raising research dollars on its own. Sterling pointed out the alarming disjunction between the most promising avenues of current CFS research, and how the federal government allocates its CFS funds. Vigorous advocacy and vigilant oversight may help correct this.

Montgomery conjured another potent image. "If normal people get a flat tire, they call AAA. If CFIDS patients get a flat tire, they call suicide prevention." She urged patients to retain a sense of perspective, to remember that there are people throughout the world who have suffered more, who have confronted even worse evils, like slavery and the Holocaust, and who have survived. The difference, she said, is that they fought wars without and we fight wars within. CFIDS is an internal enemy, not an external one, so "forget the conspiracy theory." She cautioned support group leaders not to preach, not to promote the cure-du-jour, and not to let their own ego or anger get in the way of the collective good. Montgomery also echoed Jenkins’ call to remember those who can’t afford proper treatment.

The "Living with CFS" sessions were an important addition to the conference program. They helped make the connection between the science and the suffering. Let’s hope the AACFS gives these panels a little more time at their next meeting, to allow for more patient voices to be heard and for a question and answer period at the end of each panel.

Elisabeth A. Crean, a frequent contributor to the Chronicle, is a freelance writer and a member of the Vermont CFIDS Association.

"We struggle together to reclaim our lives. By standing together, we have a voice."
Wilhelmina Jenkins

"We are in front of the parade, on the cutting edge of a field that will open doors to many immunological diseases."
Jan Montgomery

Fibromyalgia has much in common with CFS
Two of the presentations explored the relationship between CFS and fibromyalgia. Keynote speaker Robert Bennett, noted the two syndromes first share the common perception by many physicians that they are mythical or imaginary conditions. They also share similar profiles, pain and fatigue that are related in severity, predominance of women, disability, psychological stress, poor sleep, sensitivity to food and chemicals, etc.

Dr. Bennett, professor of medicine and head of the Division of Arthritis and Rheumatic Diseases at the Oregon Health Sciences University, placed fibromyalgia on a spectrum of pain conditions and noted that the same could be done with CFS and fatigue states.

The criteria for CFS differ from that for fibromyalgia in that CFS requires recent onset. Also symptoms such as impaired memory, sore throat, new headaches, post-exertional malaise, and muscle or multi-joint pain are included in CFS while they are not part of the definition of fibromyalgia. The CFS definition also has exclusions, which are not considered in fibromyalgia. If you have the positive criteria for fibromyalgia, you have it, regardless of whatever else you might have. Many patients with conditions like rheumatoid arthritis, lupus and Sjogrens also have fibromyalgia, and that may explain the difference in prevalence between the two conditions (about 2% of the population has fibromyalgia, about four times the prevalence of CFS).

Dr. Bennett suggested that a fundamental feature of the two syndromes may be disordered sensory processing, in which the pain activation and modulation systems are not functioning properly. This may be caused by substances in the brain that activate or block neurotransmitters at pain channels and may prolong the sensation of pain. Chronic pain also activates the limbic system, which controls the psychological stress or suffering response to pain.

Areas of mutual interest to fibromyalgia and CFS researchers are positive tilt table tests, low levels of growth hormone, the role of infections and other environmental triggers, activated cytokine production, and disorders in the body’s neuroendocrine system.

Don Goldenberg, chief of rheumatology at Newton-Wellesley Hospital in Massachusetts, also discussed common ground between fibromyalgia and CFS in a presentation at the patient conference. He noted that the clinical overlap is so great that a patient’s diagnosis may depend on what she tells her doctor, the patient’s perception of the illness, the apparent trigger for onset (flu or accident), or the type of doctor the patient sees.

Dr. Goldenberg noted numerous similarities in studies of physiology, sleep abnormalities, cognitive difficulties, psychiatric comorbidity, blood flow in the brain, growth hormone and other hormone systems, the HPA axis, stress and more. He also noted that many treatments, such as low doses of antidepressants, have similar responses in both conditions.