FM-CFS Canada – a charity-funded organization without borders – is focused on expanding access to quality care for more people in the Chronic Fatigue Syndrome and Fibromyalgia patient community. Through its Web site (www.fm-cfs.ca), the organization works to:
Educate more healthcare providers in the diagnosis and care of CFS and FM patients.
Expand patient connections with the relatively few expert practitioners in this specialized field.
Provide these and other resources free whenever possible, to best serve the challenged CFS-FM patient community.
Getting Healthcare Professionals Up to Speed The organization is “working with health professionals in fields ranging from nursing to physiotherapy to develop clinical guides [that they can then use through networking] to educate their peers,” says FM-CFS Canada Executive Director John Ernst.
The site already offers physicians access to a collection of resources such as CFS and FM Clinical Case Definitions and Working Guidelines for Family Practitioners – condensed from those published in the Journal of Musculoskeletal Pain.
Facilitating Virtual Patient-Physician Connections Most recently, www.fm-cfs.ca began “introducing” an international series of expert CFS-FM researchers and clinicians, each of whom becomes available to answer patients’ questions via a running Q&A.
“With such a large population of patients and so few experts,” says Mr. Ernst, “the Q&A sessions provide a useful means of connecting patients with experts regardless of location, mobility, and income levels.” As the Q&A archive grows, he adds, it should provide an education for other healthcare providers as well as patients and their families, who “will see what confronts other patients and learn they are not alone.”
Each Q&A starts by explaining the focus of the expert’s work, then invites site visitors to submit related questions. No questions about a specific medical case are considered. Over time the expert currently “on call” reviews the questions and answers a representative selection. At the time of this writing, two experts were closing their Q&A’s, and two more were beginning to take questions.
One of those just closing is Eleanor Stein, MD, a practitioner focusing on depression and anxiety. Dr. Stein formed the first multidisciplinary team in Canada to conduct integrated medical, cognitive, and sensory assessments of people with FM and CFS.
An example of a question in Dr. Stein’s Q&A was “Could you offer some guidelines as to when someone with CFS should consider returning to part or full-time work?” In answer to this question, and the patient’s explanation of her own difficulties in this regard, Dr. Stein offers her own practice-tested advice for measuring what a person can accomplish in a day. Part of this answer is the doctor’s version of “The Karnofsky Scale, adapted for use in CFS.” The K-Scale is a quick and easy way to select among 10 statements describing how well, independent, and able to work a patient is feeling, stepping up from worst to best.
The Q&A page urges patients to: “Ask a Short Question! E-mail your question to: firstname.lastname@example.org and place ‘Q&A’ in the subject line.”