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The Chronic Complex Diseases Study - Vancouver, Canada

Discussion in 'Active Clinical Studies' started by elbosque, Apr 8, 2013.

  1. elbosque

    elbosque

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    This study just recently started. I am enrolled in it as an ME/CFS patient. They are still looking for healthy subjects who do not live with and who are unrelated to ill participants. There will be 100 subjects in the study - 25 from each group.

    https://www.facebook.com/pages/The-Chronic-Complex-Diseases-Study/468387359875730

    A research study for people who have Systemic Lupus, Chronic Fatigue Syndrome and Chronic Lyme Disease and HEALTHY VOLUNTEERS in Vancouver
    Description
    Are you interested in participating in a research study for patients with Systemic Lupus, Chronic Fatigue Syndrome and Chronic Lyme Disease?

    There are several long-lasting diseases leading to disability. These include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Chronic Lyme Disease (CLD). You are being invited to participate in the CCD study that will further investigate these illnesses and their causes.

    The study will be comparing participants with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Chronic Lyme Disease (CLD) to participants who are disease free or have been diagnosed with Systemic Lupus (SLE).
    We are looking for healthy participants (ESPECIALLY WOMEN 55-80) as well as participants who fit the following criteria:
    • Have been diagnosed with Systemic Lupus (SLE), Chronic Fatigue Syndrome (ME/CFS) or Lyme Disease
    • Age 19 or older
    • Understand English
    • Do not have another medical condition that fully explains main symptoms

    Your participation is voluntary. If you are eligible and agree to take part it will involve up to 3 visits to Vancouver General Hospital. These include a screening visit with blood work, one clinic visit involving a physical exam and blood work and potentially one more clinic visit. You will also be asked to complete several short questionnaires at home.
    There will be some compensation for participating in this study and you can receive reimbursement for parking or bus fare from within the lower mainland.

    If you are interested, please contact the clinical research coordinator at sparker@cheos.ubc.ca or 604-682-2344 X 62492
    MeSci, Valentijn, Kati and 1 other person like this.
  2. pamb

    pamb Senior Member

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    Edmonton, AB, Canada
    just posted on my FB, as I am in Canada with friends in Vancouver in the right age range.
    elbosque likes this.
  3. Esther12

    Esther12 Senior Member

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    25 from each group is pretty small, but using Lupus as well as health people as control groups means that they're already (sadly) ahead of most CDC work on CFS. Sounds like a psych study to me. Anyone know who is involved, or what questionnaires are being used?
  4. Kati

    Kati Patient in training

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    Esther, I don't think you should judge based on the sample number and what the comparisons are. Dr Patrick, the main investigator, attended iacfsme in 2011, and is in no way involved in psych. he is a good man and we are very lucky to have him around asking the right questions.
    elbosque likes this.
  5. Esther12

    Esther12 Senior Member

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    It could be that the people running this are sceptical of psychiatric theories, or that they are good researchers who are interested in psych theories - it just looked to me like it would be like CDC work intended to look at psych factors (although better than normal with a control group who suffer from health problems - which is rather important when it comes to looking at how patients fill in questionnaires - the CDC's usual approach is to notice that CFS patients fill in questionnaires about their lives differently to healthy control, and claim that this is evidence of dysfunctional personalities/cognitions).

    I could be totally wrong and didn't mean to sound like I was criticising this study or the people working there (well - apart from the low numbers. It would be nice to get them up a bit).
    Xandoff likes this.
  6. Ember

    Ember Senior Member

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    From a conversation with Shoshana Parker (clinical research coordinator), I understand that this is to be a metagenomic study with potential for identifying viral causes of disease.
  7. elbosque

    elbosque

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    Ember, that is my understanding as well. Shoshana told me their hypothesis is an infectious agent is causing ME/CFS and they have new processes by which they hope to isolate it. I feel confident their intentions are good. Believe me I have dealt with enough medical professionals to get a feel for that.

    Shoshana was very kind to take time to help my wife better understand the nature of ME/CFS. Regrettably, sometimes our family members just don't accept or get it until someone in a white coat takes the time to explain it to them. As a research coordinator, that wasn't her job. I was thankful she took the time to answer my wife's questions and explain things in terms she and i could understand.

    I am not on this forum that often. I find it hard it very bright and hard to read - sometimes it is just the technical lingo which is too much. When I can, I'll add to this thread and encourage anyone else to add to it that is participating in the study.
    Kati likes this.
  8. WillowJ

    WillowJ Senior Member

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    WA, USA
    are you maybe confusing CDC ([US] Centers for Disease Control) with CCD - Complex Chronic Disease?

    I can't see any other reason for your conclusion.
  9. Esther12

    Esther12 Senior Member

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    I almost certainly did do that. Even though the CDC could be funding totally different work compared to their past stuff, I'm sure that would have affected my judgement.

    Okay, and if it's just one unit doing this study, that would mean that the relatively low numbers make more sense too.

    Whoops. Sorry all.
    WillowJ likes this.
  10. elbosque

    elbosque

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    I guess I should have been more specific. I just assume that people know that there is more than one CDC in the world. Canada has a federal CDC and the province of BC also has its own CDC. Kati or the others can correct me. I believe that the CCD (Complex Chronic Disease) Centre in BC was born out of the province of BC's CDC and will be working collaboratively with them with regards to research.
  11. Kati

    Kati Patient in training

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    Yes, Dr Patrick is closely related to the British Columbia CDC. However the BC CDC has no links with the Atlanta CDC.

    dr Patrick is using different labs/ research labs/ scientists to perform the research, not necessarily the BC CDC which is a public entity.

    That's as far as I know. i am not the authority.

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