I feel just like you. Vomit. Please tell me what do we Canadians have for ME? Whom can I turn to?
In my exprience even with the ME Drs in Canada they cannot and will not treat this as a biological disease.
They are bound by the PACE trial CBT and GET as the only "Grade A" Study done on ME/CFS.
They are also only aloud where im from to prescribe pain meds and antidepressants.
They did do any testing as per the CANADIAN CONSESUS GUIDELINES and what they specify.....isnt that a joke we in Canada created the guidelines by the most experienced people in the world yet we do not have the ability to thoroughly test a patient for reactivated viruses, bacteria, GI, SPECT Scans, etc.
Further the ME Drs I have spoken with do not listen to the CCC criteria, they diagnose you by it, but will test to exclude all other diseases that mimic ME. This is incorrect and does a huge diservice to the patient who is ill. I have had to seek testing from my GP and other specialists.
If you are from Canada the only Dr that I have heard of that does very thorough testing for ME is Dr Byron Hyde. He only sees 18 patients per year i think and he will not treat just confirm the DX of ME. He does so by using SPECT which was used by the famous Dr Jay Goldstein.
Now as I see it it becomes ever more important that if you are from Canada is to do what you can for ME lobbying as Justin Trudeau is sending $5million for Zika Research and $785 million for HIV, TB and Malaria for world wide research over 3 yrs...these disease are important.....but as per our Priminister and Jane Philpot this is inexcusable considering 400,000 are afllicted by ME/CFS a disease with infectious onset typically.
I feel for you Perrier I know you want to help your daughter but I dont know what to say. Drs in Canada either have no clue or they know and have not done enough to represent this disease and it comorbidities.
Its very sad...myself and many other Canadians are very sick...
This is a world wide epedemic that has been neglected....its probably one of the most inhumane acts in modern history if the actual statistical prevalence is correct....
We have the tools and money to deal with this problem and create effective treatments. The major hurdle was PACE and yr after yr after yr of neglect by the CDC and NIH.
I wish i had a solution for you but dont as so many different things have worked for different people....I am still confused...
