January - February
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
Jenkinsí 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-Zinnís
writings, helps Sonnenfeld notice and delineate her limits, and "feel more alive, even if Iím just watching
TV or reading a book." She also reminded the audience of the trivializing impact of the name chronic fatigue
syndrome. "Itís 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
Mondayís 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 donít 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 didnít 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 Jenkinsí call to remember those who canít afford proper
The "Living with CFS" sessions were
an important addition to the
conference program. They helped make the connection between the science and the suffering. Letís 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."
"We are in front of the
parade, on the cutting edge of
a field that will open doors to many immunological diseases."
Fibromyalgia has much in common
Two of the presentations explored the relationship between CFS and fibromyalgia.
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 bodyís 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 patientís diagnosis may depend on what
she tells her doctor, the patientís 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.