Wednesday, December 7, 2011

BC Women’s Hospital new $2 million medical centre for Lyme, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and other complex diseases

Posted by: Pamela Fayerman, December 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’s because experts and other stakeholders – including patients themselves – are still being consulted on how to deliver the services.

It’s 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’s cautiously optimistic about the clinic.

“But 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   We need to get beyond the outdated way of treating, or not treating Lyme disease, so we need the clinic to be staffed with professionals who aren’t afraid of the politics surrounding lyme disease and are willing to treat based on symptoms, and not rely on a flawed blood testing model.

“The 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. 

“I 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 – 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,” she said.

Here’s the press release about the new clinic:

“BC Women’s 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. Read more>>

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