• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Presentation from one of the Vancouver clinic doctor

Valentijn

Senior Member
Messages
15,786
It's interesting that the PT won't do PT with patients. It sounds like they're trying to deliver GET while avoiding any accountability for it, and avoid putting the hours in to figure out minor glitches like "it doesn't work."

It's pretty pathetic that the supposed experts are putting complete responsibility on the patient to figure out how to implement their little miracle cure. And in the process, they can claim that it's the patient's fault when they get worse or fail to improve.
 
Last edited:

helen1

Senior Member
Messages
1,033
Location
Canada
I'm also a former patient of the CCDP and went to the feedback session a few weeks ago on a Saturday. I really wanted them to hear what a lousy program they have. So I went and said what I thought which is the program completely lacks appropriate testing and treatment. I know they heard me, they wrote down what I said and read it back. The staff running the session reminded me so much of the program which is a lot of fluff and nothing useful.
 
Messages
29
Location
Toronto, Ontario
The nutritionist here got me the nutritional supplement from Disability, an extra 200 a month which is fantastic. It's a hard one to get and you need someone that really knows the forms. I'm super pleased with that. Some ppl go to this clinic just to get that.
 

anni66

mum to ME daughter
Messages
563
Location
scotland
With the childhood abuse and central sensitivity theory, the 'beautiful' thing is that once they have decide this is what you got, then they are under no obligation to do further testing. See, in Canada unless you have HIV or have a bone marrow transplant, patients cannot even have virus titers. Physicians do not even know what naturalkiller cell function even means. And the immunologic testing is simply not available unless you see someone specializing and who has authority to perform these tests.

Several years back I returned from Dr Klimas' office with my cytokine results, and the immunologist I saw said this kind of testing was like going on a fishing expedition and he didn't even want to look at it, told me to get CBT
It could be worse, you could be in the UK