Vancouver Complex Chronic Illnesses hires medical director

What's been buzzing in the last day is that Dr Alison Bested, who is a pathologist hematologist in Toronto has been hired to the incoming Complex Chronic Disease Clinic in Vancouver.

Dr Bested has been advocating for patients with ME in Ontario for many many years. She has also written a book. She is now leaving the Environmental Clinic, which was a diagnosis but no treatment clinic. She has been a co-author of the 2003 Canadian Consensus Criteria document.

Pamela Fayerman, a Vancouver Sun journalist who covers health, has written on the matter, and sums it all in this article, and she even quoted me:


Kati Debelic, a chronic fatigue syndrome patient and advocate said CFS sufferers welcomed Bested’s appointment.
“We wish her luck in building a clinic [that] will provide competent and evidence-based health care for the most neglected diseases of them all,” Debelic said in an email.
“Patients have been waiting for a long time for this piece of news and are looking forward to the day this clinic is finally reality. For some of my fellow patients, the wait has been unbearable.”


I hope that this turn of event is just the beginning of good care, respect, and actual treatments for patients with ME in British Columbia.

I hope that Dr Bested will embrace her role fiercely and will be able to dig us access to the laboratory tests that we need, including NK cell function, lymphocyte subset, viral titers and the latest in evidence based practices from other clinics around the world. Patients have the right to health care just like every other diseases, and patients have the right to have this disease properly researched.

So I welcome Dr Bested, wishing her easy transition to the next stage of her career.

Xtraordinary

Globe and Mail article

It is 2 Am and I am sitting at my desktop, in a daze. I almost fell off my bed when I read the news. It felt unreal. Now all of a sudden, we are legit? We are not malingerers anymore? We don't have to avoid doctors, or worse, speak really loud because we don't feel heard (or perhaps we thought they were deaf)?
The British Columbia minister of health has announced a 2 millions $ funding for chronic diseases such as Lyme, ME/CFS and fibromyalgia. 2 millions dollars is just about half of the yearly budget of the CDC CFS program that has been investigating false illness beliefs and sexual abuse as a child in CFS patients. 

The Globe and Mail calls these diseases "rare".  Rare? Well the BC government thinks there was only 30 cases of Lyme disease in British Columbia. However they are wrong since physicians have steered clear of diagnosing and reporting Lyme disease, and let's say that the canadian blood test is not sensitive at all.

We all know that fibromyalgia is not rare at all, the last number I saw was 340 000 in Canada. Everyone knows someone with this mysterious disease. But no one has paid attention.

The latest numbers for ME/CFS in Canada was 330 000. For British Columbia, apparently 28 000 people reported having the disease. Rare disease you said? Well we certainly won't rely on the government to count the cases of Lyme disease... It could be embarrassing.

The great news is a new clinic is coming, with a study, apparently. They even said they suspect infectious disease involved. You're telling me. They didn't mention XMRV, but I think they are thinking of breaking the news slowly, so they don't shock the citizens. Who knows, them citizens could get scared.

My thoughts are, what kind of clinic, what kind of studies are they planing? Could they please don't get in the habit of calling it chronic fatigue? Could they please not read anything from the UK, especially papers, or anything that has Wellcome Trust on it? Could they please phone Judy Mikovits tomorrow? She is expecting their call? Could they please collaborate with the Li- Ka Shing Institute of Virology in Alberta? Can they please leave the psychiatrist well away from us? Can they include patients in the decision making, to ensure that the best health care possible can be provided?  And my personal opinon, leave alternative medicine behind, focus on science. Focus on evidence-based medecine.

The BC Cancer Agency model is very successful, in fact other countries come and visit here in Vancouver to copy the model. Essentially it is a provincial program with protocols for every types of cancer and accessible for everybody in the province.  Attached to the BC Cancer Agency is a separate building that offers alternatives for cancer patients. From diet to therapeutic touch, to supplements and everything in between. It is a pay for service, but patients that desire that kind of service are happy to pay and are treated just the way they want to be treated.

Since here in Canada we have socialized health care, I believe that the care that is paid by the system will  consist of medical doctors and real science. At least I hope.