Kati
Patient in training
- Messages
- 5,497
Today was the day of the conference from ME/FM BC, an organization run by volunteers for patients with ME and fibro. The conference was from 2 to 5 PM, and I was so thankful they chose this time, it makes sense for all of us that need extra sleep.
The room was filled with approximately 200 people I'd say. 3 presenters were on the schedule: Dr Carruthers, for ME/CFS, Dr Jan Venter for ME/CFS/FM and Dr Dunne for FM.
Dr Carruthers is one of the co-authors of the Canadian consensus. He retired 2 years ago from practice, and no one replaced him for the ME community. He was much liked by his patients of what I hear. He presented mostly on the political aspect of ME, how there was 2 different schools of thoughts, medical and psych. He said things were moving with a new retrovirus being involved with ME and the psych lobby was trying to make leaps with the somatoform disorder on the DSM-5.
Dr Jan Venter had some kind of bizarre power point presentation full of flashing lights, jumping letters and sounds. Uggghh... That was not the right choice for patients with sensory overload issues. Dr Venter is south African that has trained with Teitlebaum, Cheney and others. He has a vast bag of tricks for ME/CFS treatment ranging from IV infusions, biofeedback, nutrition support (he sells vitamins) to cardiac impedence test, to qEEG and brain mapping to body and soul therapies. He is apparently researching the success rate of Lightning Process with ME patients (Uggh). Here apparently you can have a Lightning Process "training" for 1000$. A lot of his tricks are beyond what the government will cover in our socialized insurance, so this is a private clinic, never a good sign for Canada. I mean we are paying for health care through premiums and our taxes, and now we need to pay in order to get treated for ME? Of course the fancy testing to the US are extra. Canada doesn't even offer viral titers.
Dr Dunne is a rheumatologist that came to talk about fibro. There seemed to be a large number of FM patients in the room, and the man had some charisma. He discussed where FM was coming from, and the possible causes. When I asked what he thought of the 40% of FM patients that may have a retrovirus, he said that the study has not been replicated. He discussed some meds that were helping with fibro and how CBT was offering some tremendous help into keeping pain into control.
I had the pleasure to meet another member from this forum :Retro wink:
who maybe will provide their own views and take on the conference.
In the end I went to talk to Dr Carruthers- and what he told me striked me... "You have to be your own doctor". Unfortunately I am currently not in a mental space to be my own doctor. I am frustrated and the patient that I am wants to be cared for properly, the same way I cared for patients as a nurse. I guess I need to adjust my attitude. ME is likely the only disease in the world where you need to be your own doctor- and it's not fair.
The room was filled with approximately 200 people I'd say. 3 presenters were on the schedule: Dr Carruthers, for ME/CFS, Dr Jan Venter for ME/CFS/FM and Dr Dunne for FM.
Dr Carruthers is one of the co-authors of the Canadian consensus. He retired 2 years ago from practice, and no one replaced him for the ME community. He was much liked by his patients of what I hear. He presented mostly on the political aspect of ME, how there was 2 different schools of thoughts, medical and psych. He said things were moving with a new retrovirus being involved with ME and the psych lobby was trying to make leaps with the somatoform disorder on the DSM-5.
Dr Jan Venter had some kind of bizarre power point presentation full of flashing lights, jumping letters and sounds. Uggghh... That was not the right choice for patients with sensory overload issues. Dr Venter is south African that has trained with Teitlebaum, Cheney and others. He has a vast bag of tricks for ME/CFS treatment ranging from IV infusions, biofeedback, nutrition support (he sells vitamins) to cardiac impedence test, to qEEG and brain mapping to body and soul therapies. He is apparently researching the success rate of Lightning Process with ME patients (Uggh). Here apparently you can have a Lightning Process "training" for 1000$. A lot of his tricks are beyond what the government will cover in our socialized insurance, so this is a private clinic, never a good sign for Canada. I mean we are paying for health care through premiums and our taxes, and now we need to pay in order to get treated for ME? Of course the fancy testing to the US are extra. Canada doesn't even offer viral titers.
Dr Dunne is a rheumatologist that came to talk about fibro. There seemed to be a large number of FM patients in the room, and the man had some charisma. He discussed where FM was coming from, and the possible causes. When I asked what he thought of the 40% of FM patients that may have a retrovirus, he said that the study has not been replicated. He discussed some meds that were helping with fibro and how CBT was offering some tremendous help into keeping pain into control.
I had the pleasure to meet another member from this forum :Retro wink:
who maybe will provide their own views and take on the conference. In the end I went to talk to Dr Carruthers- and what he told me striked me... "You have to be your own doctor". Unfortunately I am currently not in a mental space to be my own doctor. I am frustrated and the patient that I am wants to be cared for properly, the same way I cared for patients as a nurse. I guess I need to adjust my attitude. ME is likely the only disease in the world where you need to be your own doctor- and it's not fair.
