British Columbia's Complex Chronic Diseases Program finally posts protocols

[concepcion]

The Complex Chronic Diseases Program (CCDP) opened in Vancouver, Canada in mid-2013. Their focus is on patients with Chronic Lyme Syndrome, Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The program has gone through a number of changes, many of which have been very concerning for patients. In fact, on opening the Lyme patient groups pulled their support from the program.

After many requests, they have finally posted their protocols on their website, and the ME/CFS protocol, as you can see, is shocking. On their site you can also find links to other protocols, including a link to ME/CFS Exercise-Slide Presentation. And this after Staci Stevens and Dr Peterson came to Vancouver to do a presentation back in May this year.

Patients are hoping to get feedback from Canadian, U.S. and International experts in the hope that we can drag the CCDP folks out of the dark ages. Any suggestions on how best to achieve this?

 

[Cort]

The Complex Chronic Diseases Program (CCDP) opened in Vancouver, Canada in mid-2013. Their focus is on patients with Chronic Lyme Syndrome, Fibromyalgia and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The program has gone through a number of changes, many of which have been very concerning for patients. In fact, on opening the Lyme patient groups pulled their support from the program.

After many requests, they have finally posted their protocols on their website, and the ME/CFS protocol, as you can see, is shocking. On their site you can also find links to other protocols, including a link to ME/CFS Exercise-Slide Presentation. And this after Staci Stevens and Dr Peterson came to Vancouver to do a presentation back in May this year.

Patients are hoping to get feedback from Canadian, U.S. and International experts in the hope that we can drag the CCDP folks out of the dark ages. Any suggestions on how best to achieve this?

This is the clinic that Alison Bested left?

 

[concepcion]

This is the clinic that Alison Bested left?

Yes.

 

[Cort]

Did she ever explain why she left?

I like the fairly wide range of options they present but then there at the top of the list is GET (I hope they're doing Dr. Klimas's HR based exercise program) and psychological interventions!

Maybe that's why she left? They demanded a protocol she could not accept?

 

[Merry]

Alison Bested said:

Pressure to see more patients resulted in administrative directives to reduce the time doctors spent with patients. The LEAN program was applied at BC Women’s in a heavy-handed manner resulting in changing the model of care. I, in agreement with the doctors, didn’t support this change that greatly reduced time doctors spent with patients because it compromised patient care in these vulnerable patients. My opinion, about the best model of care for patients was not respected and I felt disrespected in the process. BC Women’s Hospital terminated my appointment as Medical Director, but expected me to continue to see patients. I could not support the change in the model of care and I resigned as a clinician. Half of the CCDP doctors also resigned.

http://blogs.vancouversun.com/2014/...-alison-bested-leaves-b-c-returns-to-ontario/

 

[Cort]

Alison Bested said:



http://blogs.vancouversun.com/2014/...-alison-bested-leaves-b-c-returns-to-ontario/

Wow...What a mess this turned out to be. Here's from another physician at the Clinic

I feel that I must comment on Dr. Christilaw’s statements that she would hire more doctors. The CCDP has attempted to recruit more doctors since before it opened, and doctors who actually specialize in CFS/ME fibromyalgia and Lyme are very rare to begin with. We could not find one Infectious Diseases doctor in the province who would be affiliated with the program, I believe because Lyme is so controversial in the ID community.

It is also an important point that each of the doctors working for the CCDP took a significant pay cut, making about 30% less per hour than we could make in our own private offices. While working there, I still had office overhead to maintain in my own practice, which sat empty that weekday, and which was 10 minutes from my house.

Instead I commuted from Maple Ridge to BC Women’s with 2 to 3 hours of travel time added on to my day. Why did I do this? I wanted to work with Dr Alison Bested. She was the mentor and the draw to come to the CCDP but she was shackled from actually directing the program according to its mandate..

I have been continuing to advocate for the three main mandates which created the program: to establish proper testing and treatment for people suffering with Lyme, CFS/ME and FM and to educate physicians.

All three of those core mandates have not been met by the program at present and there are no plans to meet them.

 

[ScottTriGuy]

Wow, that's quite the slam from former colleagues of the current admin. Thanks for sharing that.

 

[Gamboa]

The state of health care here in Canada regarding ME/CFS is abysmal. It is going from bad to worse. We only have a few specialists for the entire country, Dr Bested being one of them, and there are so very few new ones coming along. It is still not accepted as a legitimate disease by the majority of doctors, still isn't taught in medical school and practising doctors are not allowed by the provincial health plans to treat with drugs such as antivirals.

I saw Dr Bested when she worked at The Woman's College Hospital and her hand were really tied as to what she could do. She left Ontario with high hopes of being able to do so much more in BC. How terribly sad for her to have been met with such resistance. I wouldn't blame her one bit if she went to the US to practice. At least she would be able to do so much more.

I now see Dr. Byron Hyde and he is in the same boat. He has spent decades fighting the system and manages to get a lot done, I think, through sheer persistence. I feel that the bigwigs at OHIP just let him order all sorts of specialized tests now because it easier than arguing with him. He also can't prescribe antivirals and the one speciality that he has not had any luck referring people to is Infectious Disease ( unless of course you have some really obvious disease I assume like Ebola).

The ID docs here in Ottawa, and most likely elsewhere in Canada, are particularly resistant to the concept of ME/CFS having anything to do with an infectious process or an immune/ inflammatory process. Until there is some big discovery and it is in one of their journals, they won't pay any attention to it. I sadly used to work in the Microbiology Lab at The Ottawa Hospital ( for 17 years!) and still have doctor friends there yet can't even mention to the docs that I have ME/CFS, let alone ask for their help. Some think it is a psychiatric illness so I keep a low profile. My EBV antibody testing done by Dr. Hyde, for example, is totally positive and indicates an ongoing active infection yet here I sit with no treatment and no where to go in Canada to get treatment.

Lyme Disease in Canada- whether it's here and where and who has it or not etc- well that is another fiasco! I'll leave that to a Lyme discussion.

Canada is not as bad as the UK but it is close. I am considering going to the US but the waiting lists are outrageously long.

 

[ScottTriGuy]

Well put re Canadian situation.

I can't even get a return phone call from Dr Hyde's office to get an appointment. Sigh.

I started on Isentress (an HIV med) just over 3 weeks ago - in vitro it has killed cmv and all herpes - so definitely an experiment, n = 1.

Are you aware of http://my.meaction.net/events/meaction-google-hangout-canada ? We're trying to get organized for advocacy if you're interested.

 

[Gamboa]

Well put re Canadian situation.

I can't even get a return phone call from Dr Hyde's office to get an appointment. Sigh.

I started on Isentress (an HIV med) just over 3 weeks ago - in vitro it has killed cmv and all herpes - so definitely an experiment, n = 1.

Are you aware of http://my.meaction.net/events/meaction-google-hangout-canada ? We're trying to get organized for advocacy if you're interested.

That's strange re Dr. Hyde but I was wondering why I haven't heard from him for a few months. I don't have any appointments booked but he usually calls to check in. Plus he also sends a Christmas card and I haven't had one yet. Now I am worried. I have his private number and email and will look into this. Thank you.

Regarding Isentress, who prescribed this for you and where? In Canada?

Regarding advocacy group I have just last week signed up with the Ontario group I believe. Unfortunately I have been so ill since then that I haven't looked into it further. Today is my first day of feeling somewhat well enough to actually write posts here on Health Rising. I've been sort of out of the picture for a while.

 

[ScottTriGuy]

Glad you're having a somewhat better day. Small blessings eh.

I'm HIV+ and undetectable for many years - but, thanks to smarter folks than I on PR, I learned of a couple of studies with Isentress - showed them to my doc and she prescribed for my HIV (wink) - I also showed her studies to get synthroid in spite of 'normal' labs - now I'm not freezing to death - she's somewhat empathetic so I guess I'm lucky in that regard.

So far on the Isentress I'm sleeping better at night, have more sleepiness during the day, and maybe feeling a tiny, wee bit less sick - I'm trying to be patient, I keep telling myself I'm not going to feel better overnight, recovery takes time.