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Complex Chronic Disease Clinic (Update), opening at BC Women's Hospital

Discussion in 'General ME/CFS News' started by Ember, Dec 28, 2011.

  1. Ember

    Ember Senior Member

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    http://blogs.vancouversun.com/2011/...iseases-clinic-opening-at-bc-womens-hospital/

    As reported below, the objectives of the study are to: a) Formally test the hypothesis of an association between ME/CFSand murine retroviruses in ME/CFSpatients in BC, and b) to look for other microbial and host factors with ME/CFS (hypothesis generating approach).

    Freedom of information request yields info about Lyme & other chronic diseases clinic opening at BC WomensHospital

    December 28, 2011. 11:37 am

    Posted by:
    Pamela Fayerman

    Theres plenty of distrust towardsgovernments and medical providers on the part ofLyme disease (LD) sufferers or at least those convincedby alternate means that they have LD and werent diagnosed soon enough to be prescribedeffective treatment. The reaction to a recent freedom of information file obtained by LD advocate Gwen Barlee (and shared with me) reflects that distrust.

    I am amazed, appalled and deeply disappointed that the government appears to be dropping the ball again on taking a proactive approach to managing, diagnosing and treating Lyme disease in BC, Barlee told me after she obtaineddocuments consisting ofcommunications between government bureaucrats and those setting up a new clinic to assessand treat individuals with disabilities that may havestemmed from diseasespossibly triggered by infectious agents (like ticks).

    Call me naive but Imnot as skeptical about what the contents of the FOIfilesuggests because I still believe those planning the clinic have good intentions and arent going todrop the ball on Lyme patients. Ive readhundreds of pages in the disclosure to Barlees request for all emails and other information related to LD and I see neither a conspiracy nor a smoking gun. This is what I found noteworthy:

    1. While the government recently announced that BC Womens Hospital will be the site for the new chronic and complex disease clinic...there were at least four other locationsconsidered the BC Centre for Disease Control, Mt. St. Josephs Hospital, the University of BCand the Arthritis Research Centre.In the case of BCCDC, it was ruled out because its existingclinic isfor patients with tuberculosis and sexually transmitted infections so the patient population mix would not be suitable.

    2. The clinics operating costs are expected to cost taxpayers $1.1 million a year and a case control research study, employing genomic analysis,should cost another $700,000. Financial contributions from the pharma industry are not being sought in order to avoid conflict of interest.

    3. A community advisory group that really works will be struck to ensure the philosophy and direction of the clinic is in line with what patients want and need.

    4. A virtual clinic was initiallyconsidered (presumably to save money) but planners came to their senses and realized that an actual dedicated space is the only way to properly assess and treat patients. The goal of the clinic is to help patients by accurately diagnosing their conditions, providing treatment and helping with ongoing symptom management, according to health ministry bureaucrat Effie Henry.

    5. Nurse practitioners will be involved in the clinic where 5 or 6 patients a day will be seen. The low volume of patients is due to the fact that such patients require lengthy appointments; as long as two hours for each visit. Hence, doctors will not be paid on a fee for service basis. Theyll get salaries or sessional payments.

    6. Patients will be able to get referrals to psychologists, psychiatrists, rehab specialists, sleep disorder experts, rheumatologists, immunologists, nutritionists,alternative practitioners, and more. The clinic model will be similar to those where patients with automimmune diseases, diabetes, HIV, hepatitis, and other time and labour-intensive conditions are treated.

    7. Dr. David Patrick (head of epidemiology at theBritish Columbia Centre for Disease Control and director of the UBC School of Population and Public Health) is the man in the hot seat as the governments go-to guy for setting up the clinic. The earnest and highly respected Patrickis currently looking for a medical director of the clinic. Its expected that individual will come from outside BC. In a recent email to me,in response to Barleesconcerns that LD is not going to get as much profile orattention at the new clinic as will other diseases like chronic fatigue and fibromylgia, he said:

    The Complex Chronic Disease clinic is for people who suffer from a group of complex chronic diseases leading to disability in British Columbians. Some of these include; Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome(ME/CFS), Fibromyalgia Syndrome, and Lyme disease. Many of these illnesses have similar symptoms and by focusing the work of the clinic on all of these, we can learn more about their causes, diagnosis and potential treatments. We are pleased to have participation from a variety of patient groups including representatives from the Canadian Lyme Disease Foundation, MEFM Society of BC and National ME/FM Action Network.

    This is what Gwen Barlee told me in an email (which Ive not edited):

    Ive attached the file at lot of it was heavily redacted at thebeginning (I filed a complaint with the FOICommissioner today). Thatoften happens with politically sensitive files. A big area of concern for me is how the clinic appears to be shiftingaway from focussing on Lyme disease to concentrating of CF/FM. Theimpetus for the clinic came from the very bad press the government wasgetting on LD and the inability of people with obvious symptoms of LD to get treatment in BC. It is very apparent from the hundreds and hundreds of pages of documents I have received through FOI on theissue of Lyme disease that the clinic was created to deal with growing public concerns around this serious tick borne illness.

    I think that focus has been lost or is in the process of being lost. For instance on page 119 (Dr. Patrick who is in charge of implementing the clinic submitted a report to government in May of this year the title of the report doesnt even mention Lyme disease which is so bizarre as to be amazing. It says A Clinical Program for Chronic Complex Disease: Raising the standard of assessment and care for people living with Chronic Fatigue Syndrom/MyalgicEncephalomyelitis, FibromyositisSyndrome and related conditions. What happened to Lyme disease?) when it talks about study considerations the objectives of the study are to: a) Formally test the hypothesis of an association between ME/CFSand murine retroviruses in ME/CFSpatients in BC, and b) to look for other microbial and host factors with ME/CFS (hypothesis generating approach).

    The complete omission of Lyme disease as an objective of the study is a huge red flag for me. The other thing that causes me grave concern is the fact the clinic wont be treating people it will be assessing people. Many patients wont be further ahead, especially Lyme disease patients some of whom are already diagnosed and seeking treatment in the US because they cant get treatment in BC. Also I see very little indication that the Schmidt report recommendations are being implemented nor do I see new diagnostic tools being implemented. If we use the same flawed blood tests to try to diagnose patients we will be no further ahead than were we were 10 years ago.
     
  2. boomer

    boomer Senior Member

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    New chronic disease center

    Well, I guess it is better than nothing. I think they have probably justified the center on the basis that it will save health care dollars by eliminating the constant circling in the health care system to get a diagnosis. And that is an important step.
     
  3. Ember

    Ember Senior Member

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    I'd say so. A case control research study, employing genomic analysis,should cost another $700,000.
     
  4. boomer

    boomer Senior Member

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    I am proud of them. I hope they will turn out to be an example for the other provinces. When I think about it, even if they do not provide treatment they could possibly refer the patient back to their own doctor with recommended guidelines for treatment.
     
  5. Ember

    Ember Senior Member

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    Yes, GP involvement is central to their plan.

    As for the research, I don't know whether they'll use the Canadian Consensus Criteria or the International Consensus Criteria. But it's good to know that there won't be any CFS-Fukuda nonsense. I'm happy too to know that they have links with Gordon Broderick.
     
  6. eric_s

    eric_s Senior Member

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    I think especially for something government planned it sounds pretty good. Also they mention treatment a couple of times, so i don't think there won't be treatment there. But of course in the end one will have to wait until they open and see patients, before one can make a judgement. I do understand the Lyme people are worried though, if Lyme gets mentioned less often than ME/CFS and Fibromyalgia. I think BC is giving quite a good example with this clinic...
     
    justinreilly likes this.
  7. justinreilly

    justinreilly Senior Member

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    They won't use Fukuda? really? that's great news!
     
  8. taniaaust1

    taniaaust1

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    I really feel sorry for the Lymies if they are what group has got this clinic started but now not even being properly refered to and mentioned.

    I think it is quite wrong not to keep recognising that group fully in things.

    "
    Sounds like they will be providing treatment too. It would be not good if they were only diagnosing and then just refering people back to their own GPs for treatment as I myself know that one is often falling in a huge gap when that happens. Most GPs even with these diseases diagnosed, often being unwilling to provide treatment so hence any good clinic also needs to be providing treatment and follow up.
     
  9. Kati

    Kati Patient in training

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    The goal of the clinic is to diagnose and offer treatments. They are planning to offer guidance for physicians especially for the out of town patients since the clinic will offer services province wide.

    The thing is they are not going to offer "primary care" just like cancer patients would not get a pap smear at their oncologists unless they have cervical cancer.

    As for Lyme VS ME VS CFS VS fibro- some people will come in with misdiagnosis. It is bound to happen. I foresee the clinic offering a range of diagnostics (which are not currently available in British Columbia), hopefully treatments, and clinical trials. I feel it's important for patients to come in "open minded" because what they think they have may not be "it"- think about Dr Hyde that says that 30% (my number, not verified) of ME patients are misdiagnosed.

    The clinic will hopefully sort all of that. However it will take time. There will be growing pains. The medical director is not hired yet and he/she will need to get College registration, moving in and hire clinic staff. It is not going to happen tomorrow- but hopefully it will open in a few months. The good part is that David Patrick is a great person to research our illness and we are very, very, very fortunate to have him. I know so.

    Sadly patients are waiting, and expecting.

    My 2 cents.
     

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