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What's going on in British Columbia, Canada for ME/ FM?

Discussion in 'General ME/CFS News' started by Kati, May 29, 2010.

  1. Kati

    Kati Patient in training

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    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: :cool: 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.
     
  2. Frickly

    Frickly Senior Member

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    No, it is not fair Kati. Unfortunately, this is good advice, although, I hope this will change soon. Apparently, we still have alot of work ahead of us.
     
  3. Kati

    Kati Patient in training

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    Frickly, it feels like a mouse let lose in one of those giants puzzle boxes with dead ends, trying to find the exit. But there is no exit.
     
  4. kit

    kit

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    No Kati, its not fair at all. Thanks for giving us a rundown on what's going on in B.C.
     
  5. Frickly

    Frickly Senior Member

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    There is an exit Kati. I have no doubt we will find it. :)
     
  6. usedtobeperkytina

    usedtobeperkytina Senior Member

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    Clay, Alabama
    Not the only one. Ever seen "Lorenzo's Oil"? If you don't like medical industry now, you certainly will after seeing that.

    Here is the trailer. http://www.youtube.com/watch?v=CxkylRxJxh8

    It looks like on Youtube, someone has put up the whole movie in segments.

    Tina
     
  7. Kati

    Kati Patient in training

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    It's not that I don't like the health care system, I mean if you got cancer, AIDS or a bad heart, you're "lucky": there is care for you. And then if you got ME/CFS, you're out of luck. Wouldn't it be called discrimination in a socialized health care system? Where is the ethics of that?
     
  8. Dolphin

    Dolphin Senior Member

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    I haven't the energy to watch it now - do you mean "will not"?
     
  9. Chris

    Chris Senior Member

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    Victoria, BC
    Discrimination..

    Hi, Kati--thanks for this report; I did not feel up to the trip, but you pretty much describe what I feared and expected. I think it is discrimination--and maybe we should write--maybe you have already (I tried VIHA, and got nowhere)--I guess the BC College of Physicians is one potential target, or have you already blanketed them? I am torn between trying to see Martin Lerner, and going to Panama for stem cells; think it would be worth trying to push for Med coverage of things not available in BC, as some such treatments are being covered here and in other provinces? Best, Chris
     
  10. Kati

    Kati Patient in training

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    Tina, thanks for the link. The You tube movie in segment is "almost" all there, there is probably 30 minutes of movie missing. But I got the story. Doctors like to see themselves as an establishment. Unfortunately for them, some patients are more educated in their own disease than they are. But they have the power.
     
  11. L'engle

    L'engle moderate ME

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    Naturopaths in BC should be able to write prescriptions soon, and they are often much more receptive to CFS/FM. I guess it would be up to the luck of the individual to find a naturopath willing to try treatments that are allopathic but not supported by local MDs. There is a list of medecines that they will still not be able to prescribe, and I don't know where existing antivirals/antiretrovirals fit into the scheme. Glad you were able to attend the conference. The mainland makes me tired...
     

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