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New Chronic Illness Clinic in Vancouver

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2013.

  1. Andrew

    Andrew Senior Member

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    I think I read about this here before, but not about it actually opening. It's a new Complex Chronic Disease clinic, located in BC Women’s Hospital. I wonder if men are allowed to get treated there. Anyone know?

    The article is dated September 10, and it says something about an open house on Thursday. So I guess that would be tomorrow?

    http://www.vancouversun.com/touch/story.html?id=8895285
  2. Sparrow

    Sparrow Senior Member

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    Last I heard, men were absolutely allowed to be treated there, but it was only open to BC residents at this time.
  3. Kati

    Kati Patient in training

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    Who on earth would like to come to BC to receive recommendations for CBT GET and meditation, because this is what they are currently offering. Medical problems are being checked at the door.

    The Lyme group have checked out of the clinic and not recommending their paitents to attend.
    merylg likes this.
  4. Sparrow

    Sparrow Senior Member

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    I can't say I'm entirely surprised about the treatments offered, though I'm not sure there is any kind of belittling intent behind them. I went to a similar clinic in Toronto, and though I have no direct experience with the BC place, I suspect the situation may be similar. As I understand it, because the clinic wants to keep a certain amount of credibility and funding from the healthcare system, they can't do anything too far outside of the "mainstream", at least not without being very careful to go through exactly the proper channels. Officially their main treatment option was "patient centred self-management" but the doctor I saw was regretful and seemed genuinely frustrated that she didn't have more to offer me.

    However, she's been trying very hard to get a Valcyte clinical trial going so that she could offer that to patients. She pushed the IACFSME Physician's Primer heavily with my doctor, including support of the medications listed in it. She definitely understood how very sick we can be, and firmly denounced my original misdiagnosis of depression. She talked a lot about my viral levels and documented the other objective physical signs of illness.

    And although she set me up with an exercise physiologist for what could be classified as "GET" in theory, it was the type advocated by Dr. Snell and the Pacific Fatigue Lab types, overseen by someone who has studied their work - careful monitoring of heart rate, etc. and absolute avoidance of anything that might trigger a crash. My physiologist has never ever advocated doing more, or increasing my exercise or activity level. In fact, she's been very adamant about trying to make sure I'm doing less, resting more, etc. That's the same message I got from the doctor at the clinic.

    It isn't a cure. And they know that. But it does help. And I didn't find anything in it reminiscent of what's going on in the U.K. Absolute validation of the physical nature of the condition, with emotional supports only in place to try to help make it through a difficult situation. Is that not the message that's coming out of the BC location?

    The impression I get is that if they push too far outside of the currently accepted box, they risk being discredited or shut down. And it may be better for them to work slowly to change the climate than to be pushed out of it. I have received a certain amount of credibility from other doctors now that I can say I've been to see this clinic. So it has been helpful to me. Whereas suggestions that came via certain other doctors have been immediately dismissed, because those doctors are known for stepping too far outside of the bounds of regular medicine.

    It's a sad state of affairs, and it shouldn't be that way. But I think it's the overall view of the other Canadian doctors that we need to change. I get the impression the folks running these particular places do understand, and mean well, and are trying to do what they can. I would hate to discourage them with negative backlash. The province needs to see that more help, more clinics, more support is needed for us. I would worry that if patients revolted against these places that the powers that be would see that as a sign that they were wrong to spend money in this direction because clearly there's no demand, rather than realizing the problem is that they don't go far enough. Compared to having no provincially-supported clinics at all, this seems like a tiny step in the right direction. A very tiny step, mind you, but still a step.

    I think the clear message should be "this is a tiny step, but we need MUCH more" rather than "this is no good".

    (unless for some reason the BC version is spinning ME as a mental illness, but that isn't the impression I've received - please correct me if I'm wrong)
    L'engle and SOC like this.
  5. Andrew

    Andrew Senior Member

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  6. Kati

    Kati Patient in training

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    i am being very public here, I was one of the patients seen at the clinic so far.

    I have relived through all the abuse I have been through with past doctors, all over again. They wanted to sell me a support group, that's what they had on their agenda and likely brainwash me with their ideas of meditation, coping, nutrition and complimentary therapies, which I want nothing to do with.

    I want medicine. i want to be tested to death. Take my blood, bone marrow, spinal fluid. Rule out everything.
    Let's try drugs. There are many on the shelf. My preferences right now would be Valcyte. There are a few papers supporting the use of Valcyte in patients with ME.

    I want science and medical care, and yes, it means addressing the other issues that are neglected, so neglected it's appaling. Namely, I need specialist consultations. And because I have the CFS label attached to my name, they are deemed not urgent. There is currently over a year wait time for a rheum consult. i have an abnormal bone scan and elevated ESR. The clinic could advocate for me, at the very least and not only they haven't done that, there is no consultation report at my GP's office 6 weeks after seeing them.

    It may not be everybody's experience at the clinic, but mine has been horrendous, and they picked the wrong person to have a bad day.
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  7. Sparrow

    Sparrow Senior Member

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    I realized I might have given the wrong impression with part of my comment, so wanted to clarify in case others are reading and got scared away. The clinic I went to did not recommend GET as you would see it in the psych literature, in any way. What they have me involved with is heart rate monitoring to ensure that I don't go over my estimated anaerobic threshold. ...Which is good stuff, based on good science, and is a positive thing for patients.

    Kati - I wish there was a doctor out there doing what you've described. Maybe Dr. De Merlier in Belgium would be close (I think he comes down pretty heavily on the alternative medicine stuff too, though)? I think maybe Dr. Hyde might be the closest in Canada to what you're looking for, but he doesn't really seem like a great fit. He's much more focused on looking for a misdiagnosis rather than tracking down ME symptoms and causes, and there is a lot of testing even he doesn't do (immune system stuff, spinal fluid, bone marrow, etc.). And he doesn't do treatment at all (plus he's expensive). For medications, it seems like often a person needs to see a specific doctor for a specific medication - even the doctors willing to be experimental for us seem to generally have a few things they use a lot and others they don't get involved with. So one person specializes in Valcyte, one in Equilibrant, someone else in Rituximab, etc. If you have something in mind that you want to try, I would suggest finding a doctor who works with that medication a lot, and seeking them out specifically. I don't know of anybody in Canada who's treating with that stuff regularly though. Dr. Lerner might be your closest source for Valcyte.

    I think like with many of these doctors, it helps to have an idea beforehand of what kinds of care they do and do not give. It's really frustrating to go into an appointment expecting one thing and to be faced with something else entirely. I think we've probably all been there.

    My point was that at the clinic I went to (which was not the BC one, but has a connection to it), what they offered me was good. Not comprehensive, and definitely not enough. But not harmful either. I just wanted to make the distinction because there are plenty of programs out there that belittle our condition, or imply things about it that simply aren't true at all (i.e. psychobabble). And I think some of those places can do real harm to patients. That wasn't what I got from these guys. What they offered was helpful stuff in its way - some of it was soft interventions that have been shown to have some positive impact for ME patients specifically (frequent rest breaks, pacing, certain diet changes, etc.), and some of it is the kind of support stuff that gets offered to people with other conditions. It just clearly wasn't the kind of stuff you were looking for (and I totally understand that. I'm sure I would have felt that way myself if I hadn't had a heads up going in about their limitations). I don't think what they offer is enough, but I think they are on the team with the good guys, and that we need those kinds of people to dip their toes in if we're going to get gradual progress towards more helpful things.

    There's no question that we need treatment. But the medical community isn't set up to allow doctors to be widely experimental without consequences (for usually good reasons). What we really need is progress in getting better treatment options in development so that no one can argue with whether they're safe or effective, and getting what treatment options we do have recognized, and legitimized, and approved, so that doctors can offer them without having to start a clinical trial or go way off label to do it. We need more research.

    Damn. I'm getting myself all worked up. I think I'm going to go donate an extra $5 to research today.
    Valentijn, L'engle and SOC like this.
  8. elbosque

    elbosque

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    The book is not finished on the clinic and I do not think it should be so easily discarded on the trash heap. For the 100,000s of people in Canada with ME, the fact that it is getting started at all is a sign of hope and a sign of recognition of our illness where many MDs and other health care practitioners do not have a clue about ME. Kati has had her experience and I can neither confirm or deny that. However, I believe much more can be accomplished working to make it into something useful. Most people ill with ME in Canada neither have the financial resources or energy to travel for treatment to private clinics like some people. They need to work with what medical resources they have to make them better and to better understand our needs. Is the clinic perfect and what I want and need? No it isn't. I can tell you that even with its imperfections, it still has us much further ahead in BC and Canada than we were this time last year. This time last year, you would not have seen this on the news. This time last year fewer people, especially medical personnel knew about ME. This time last year there was no publicly funded and created clinic for ME patients anywhere in Canada. It isn't the perfect but maybe next year if we work with the people at the clinic to make it better, it will be much better. Other provinces are watching, what we do in BC will have an impact on what else happens across Canada.

    Constructive criticism and advocacy are good and necessary. They have their place in a strategic plan to build up the clinic which has less funds to operate than what is the usually billing to the province from just 4 specialist MDs. They need funds and they need and approval from the government's Medical Service Plan to cover the testing and treatment that we want to have offered. Hopefully this will be just one of many such clinics that will created in our public healthcare system in Canada.

    http://globalnews.ca/news/837853/complex-chronic-diseases-clinic-opens-at-bc-womens-hospital/
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  9. Kati

    Kati Patient in training

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    The concept of being a 'symptomatic clinic' is what they came up with for the grand opening. They never mentioned 'symptomatic clinic' before. This is worrisome. It means that they don't have to treat your disease. It means that they don't really need to do tests on you. It means that they will put you in a group and push information on you-

    Health care in Canada is supposed to be free for everyone. It should be free of discrimination as well. It's not happening for our diseases, ME, FM and Lyme. We have been and still are left behind by the health care system in each of our provinces.

    I have had a good look at the people who attended this opening. A lot of people wearing their lime green shirt, quite a few of them with picc lines in their arm for their antibiotics. A few people with walkers, and wheelchairs. A few people who were shaking and struggling from just being there. Quite a few who have been sick for very long with little or no care, but have learnt to deal with it, somehow. I have heard the tone of the lyme people who are totally aware that this clinic will not answer their needs. I am with them.

    Imagine being in 1982 with HIV/AIDS, and sent to a support group to learn how to cope with your disease, whatever you've got?

    We are in 2013. We are the AIDS patients no one wants to see. It is still this way and in my opinion it will take years if not decades before there is any kinds of care happening over here. The comments I am making, it's with patients in mind.

    The direction that the clinic is taking is in my opinion totally wrong. My opinion may be of no value for you John, however having worked in the health care system as a RN brings me a different perspective as what competent health care looks like, and how medical treatments, clinical trials, and evidence-based medicine have change people's life in HIV, cancer and many other fields.

    Paying naturopath and alternative medicine doctors in the clinic's roster will only delay acceptance of our disease with the mainstream doctors and delay competent health care that patients need and deserve, if they want it.
    Valentijn, shannah and merylg like this.

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