and other complex diseases December 6, 2011. 4:30 pm =95 Section:
Medicine Matters,
Posted by:
Pamela Fayerman/Vancouver Sun
BC Women=92s Hospital named new medical centre for Lyme, chronic fatigue
and other complex diseases
Posted on Dec 6, 2011
The BC government pledged $2 million eight months ago for a new clinic
where those with lyme disease and other complex, chronic diseases
could go for help in managing their many symptoms. Today the clinic
has a home but no opening date. That=92s because experts and other
stakeholders =96 including patients themselves =96 are still being
consulted on how to deliver the services.
It=92s probably wise to tread carefully because in the highly emotional,
frustrating and uncertain world that is the everyday reality for
patients like these, such a clinic must be a welcoming place offering
hope, help and shared decision making.
Lyme disease, fibromyalgia, chronic fatigue and other complex diseases
have always been contentious, partly because of ambiguous symptoms
and the difficulty with diagnostic tools. The announcement about the
clinic came just days after I wrote this story about how doctors in BC
are under-reporting lyme disease cases and not so great about
diagnosing or treating the disease. This is not unique to Vancouver.
There are tens of thousands of patients across BC with debilitating
chronic diseases in which the cause is unknown, but may have been
triggered by an infectious agent. Fatigue, pain, stiffness and
insomnia are often hallmark symptoms. Gwen Barlee, a chronic lyme
disease patient/advocate told me today she=92s cautiously optimistic
about the clinic.
=93But the proof will be in the pudding. Who will run the clinic? We
need to get beyond the outdated way of treating, or not treating Lyme
disease, so we need the clinic to be staffed with professionals who
aren=92t afraid of the politics surrounding lyme disease and are willing
to treat based on symptoms, and not rely on a flawed blood testing
model.
=93The BC government has a chance to do this right. I hope they will
seize the moment. They need to work closely with CanLyme and lyme
disease patients instead of marginalizing people who are living with
this disease.
=93I hope the BC clinic can lead the way in Canada with a proactive,
open and inclusive approach to treating this illness. Of course the
clinic is only one part of the equation =96 we need the BC government to
implement the recommendations from the (Brian) Schmidt report - so
far, I see no evidence that is happening, and that makes me
concerned,=94 she said.
Here=92s the press release about the new clinic:
=93BC Women=92s Hospital & Health Centre will be home to a new clinic that
will address complex diseases such as Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome, Lyme disease and
Fibromyalgia, which often lead to disability for British Columbians.
British Columbia is taking a leading role within Canada with the
clinic and its associated research program. The establishment of the
clinic is made possible with the direct investment of $2 million from
the BC Ministry of Health announced earlier this year. The clinic
will work with patients and family physicians from across the province
to provide care for people in addition to learning more about these
complex diseases.
The clinic and its research program are expected to support clinicians
and researchers in their pursuit of the discovery of causes, diagnosis
and potential treatments for these types of diseases. The clinic will
also explore the feasibility of incorporating an outreach component to
build capacity in the province. The goal will be to enhance the
ability for people from all regions within British Columbian to access
improved care.
Consulting with people who are suffering with complex chronic diseases
during early development of the clinic was established as a key
priority. The Complex Chronic Disease Clinic Community Advisory
Committee convened its inaugural meeting on November 10th, 2011. The
planning team has taken additional time to meet with key stakeholders
thus the opening of the clinic has been extended.
During the meeting participants, which included representatives from
the Canadian Lyme Disease Foundation, MEFM Society of BC and National
ME/FM Action Network, were provided a tour of the space. In addition
they provided input and feedback to the clinic organizing committee on
a variety of topics including community engagement strategies that
will provide meaningful input into clinic planning, service delivery
model and proposed research agendas.
BC Women=92s Hospital & Health Centre is an agency of the Provincial
Health Services Authority (PHSA). The PHSA has been working on the
creation of the clinic, which aims to provide patient and
symptom-centered care. In addition to establishing a strong link with
community advisors from the beginning, recruitment for medical
leadership for the clinic is underway.
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