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Discussion in 'Active Clinical Studies' started by glenp, Aug 25, 2010.

  1. glenp

    glenp "and this too shall pass"

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    For those of you in the Vancouver area, make sure that you are registered as a volunteer for research at http://www.fm-cfs.ca/home.html if you cant register email them and put May 12 in the title. it is important that you register there if you want to get into a study in Vancouver

    glen
     
  2. Chris

    Chris Senior Member

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    Glen, I can't find anything relevant on this website--could you PM me with details? But I live in Victoria, not Vancouver--but would be prepared to cross if the study looked interesting. Best, Chris
     
  3. glenp

    glenp "and this too shall pass"

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    B.C. announces $2 million to study fibromyalgia, Lyme disease, chronic fatigue
    Rebekah Funk, The Canadian Press
    Wed, 30 Mar 2011 17:22:00 CST Share |

    VANCOUVER - Health officials in British Columbia announced $2 million for a study and new centre that will focus on screening, diagnoses and treatment of patients with fibromyalgia, Lyme disease and chronic fatigue syndrome.

    The goal of the study and a new clinic initiated by the Ministry of Health and Provincial Health Services Authority is to accurately diagnose the complicated conditions, and provide treatment and ongoing symptom management to patients.

    Ryan Jabs, spokesman for the Health Ministry, said the plan has been in the works for quite some time but was announced now to address recent public concern that the province lacked proper health infrastructure to diagnose and treat patients with chronic illness.

    B.C. doctors have been accused of drastically under-diagnosing Lyme disease, in particular, and failing to report the cases that are diagnosed, as required.

    In the past many Canadian patients sought treatment for these conditions in the United States, but Jabs said the new centre will educate local doctors on what to look for.

    Jabs said it will be a hub for provincial family doctors and will provide an educational component so medical practitioners can accurately recognize and diagnose the chronic conditions.

    "There's considerable debate around the medical community, internationally and locally, on diagnosis and treatment of these types of complex illnesses because there are a lot of symptoms that overlap," he said.

    "They're rarer conditions and there's not a centre of expertise. The clinic will help that."

    He said exact details regarding the scope of the study and clinic are in the works, but aren't expected until the summer. Officials hope to have the study up and running up the fall.

    Health Minister Mike de Jong said the additional funds mean B.C. will take a leading role in this area of research.

    "I hope that B.C. can help to positively impact patients across the country by studying these illnesses and learning ways to help patients manage their symptoms," he said in a news release announcing the funding.

    Currently, the cause of these debilitating illnesses is unknown, though doctors suspect an infectious agent may play a key role in a patient's development of chronic diseases.

    Recent genome science breakthroughs in DNA sequencing and computer analysis have doctors hoping they'll have some answers to these complex health issues soon.

    About 343,000 Canadians are afflicted with fibromyalgia, a condition that results in chronic pain and stiffness in the muscles and joints, poor sleep and fatigue. Women are approximately 17 per cent more likely than men to develop the illness, according to the federal public health website.

    Others with acute Lyme disease were able to be treated with antibiotics to prevent the development of chronic Lyme disease, but in some cases the medication does not prevent the onslaught of the chronic condition.
     
    aimossy likes this.
  4. Chris

    Chris Senior Member

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    Glenna, thanks for posting this good news--though have to say that $2 million won't go far if it is intended to cover research, doctor education, and patient treatment! But it is a great start, and let's hope it gets going successfully. Best, Chris
     
  5. glenp

    glenp "and this too shall pass"

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    government release

    PROVINCE INVESTS $2 MILLION IN B.C.

    http://www2.news.gov.bc.ca/news_releases_2009-2013/2011HLTH0019-000315.htm


    NEWS RELEASE

    For Immediate Release
    2011HLTH0019-000315

    March 30, 2011
    Ministry of Health
    Provincial Health Services Authority






    Help for patients with complex chronic diseases



    VICTORIA – A $2-million provincial clinical and research study will help patients with a variety of complex chronic diseases, such as chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome, with screening, diagnosis and treatment.



    There is a variety of debilitating complex chronic diseases where the cause is unknown, but where it is strongly suspected that an infectious agent may play a role. These diseases can be very difficult to diagnose and treat. They often cause patients to experience extreme fatigue and pain, trouble sleeping and stiffness.



    However, over the last few years, there have been many advances in genome science, including DNA sequencing and computer analysis. These advances have led to new techniques that may help to diagnose previously difficult illnesses, such as these. As a result, in September 2010 the Ministry of Health Services asked the Provincial Health Services Authority (PHSA) to present options for a clinic for patients with complex symptoms, possibly related to an underlying infectious disease.



    With this clinic and study, British Columbia is taking a leading role within Canada, and will work with patients and family physicians from across the province to provide care to patients and learn more about these complex diseases.



    The clinic will take referrals from family physicians or other health care providers for patients with symptoms of these chronic illnesses. The goal is to help patients by accurately diagnosing their conditions, providing treatment and helping with ongoing symptom management.



    The clinic will also include telehealth capabilities, to provide consultations and information to physicians and health care providers from all across the province.



    To coincide with the clinic, the Province’s research study will collaborate with the clinic to examine these illnesses in depth.



    The Province is working with PHSA to develop a detailed business case for the clinic and research study, which should be up and running by fall 2011.
     
  6. helen41

    helen41 Senior Member

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    Sleepy Hollow Canada
    that is wonderful, thankyou so much for sharing this!
     
  7. Ember

    Ember Senior Member

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    Notice too the attached comments and quick facts. I'm encouraged that they mention (second to bottom) the severe unmet medical and homecare needs of chronic fatigue syndrome patients.

    Quotes:
    Minister of Health Michael de Jong:
    Chronic Lyme disease, fibromyalgia, and chronic fatigue syndrome can seriously affect peoples quality of life and cause immense pain and suffering. By taking a leading role, I hope that B.C. can help to positively impact patients across the country by studying these illnesses and learning ways to help patients manage their symptoms.

    Provincial Health Officer Dr. Perry Kendall:
    I am very pleased that we are moving forward with this project. I am hopeful that the investigations that we can do here in B.C. will uncover causes of illnesses, lead to improved diagnostics and offer new tools for physicians and patients. By taking an in depth look at these diseases, we will be better able to help our patients.

    PHSA president and CEO Lynda Cranston:
    The clinic will work with physicians from across the province to help them understand the clinical signs of these chronic diseases, to provide testing assistance when needed, and to provide help and guidance with treatment. We are hopeful this clinic will lead us to better understand the causes of these complex chronic illnesses.

    Quick Facts:
    Lyme disease is a tick-transmitted infection caused by Borrelia burgdorferi.
    Diagnosis of Lyme disease can be made by physicians based on clinical signs and symptoms and can be supported by lab tests by PHSA laboratories.
    Less than one per cent of ticks in B.C. that can carry Lyme are infected with the Lyme-causing bacteria.
    Early symptoms of Lyme may include a bulls-eye rash which spreads outward on the skin as well as fever, headache, and muscle and joint pain.
    BCCDC uses two-tier testing for Lyme disease as recommended by the Canadian Public Health Laboratory Network, the Centre for Disease Control USA, the Association of Public Health Laboratories, the Infectious Diseases Society of America and other major health care organizations throughout the world.
    Acute Lyme disease is treatable with a course of antibiotics, which usually prevents development of what is referred to as chronic Lyme disease. However some people even after treatment develop chronic, debilitating symptoms, which can be more difficult to treat. This new clinic will help the medical world understand this chronic complex illness and may uncover unknown causes for this type of illness.
    The Canadian Community Health Survey found that there are 38,000 British Columbians who report being diagnosed with chronic fatigue syndrome.
    Among Canadians with 23 chronic conditions, those who reported chronic fatigue syndrome consistently ranked as having more unmet medical and homecare need, less food security, more marginalization, more need of help with tasks, greater difficulty in social situations, less ability to work and lower personal income.
    Patients who suffer from fibromyalgia often experience diffuse chronic pain, accompanied by other symptoms such as poor sleep, fatigue and stiffness.
     
  8. Daffodil

    Daffodil Senior Member

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    better than nothing but $2 million is peanuts. they still are not taking this seriously...incredible.
     
  9. Revday

    Revday

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    [O.M.G., I'm rich!----Silver in the Hair ----Gold in the Teeth----Crystals in the Kidneys----Sugar in the Blood----Lead in the Ass----Iron in the Arteries----And,an inexhaustible supply of Natural Gas.
    I never thought I'd accumulate such wealth - helen41

    Very funny and so true!
     
  10. Ember

    Ember Senior Member

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    The media coverage and comments (Globe and Mail) are heavily tipped toward Lyme disease:

    $2-million program targets chronic diseases Vancouver Sun
    BC funds study of fibromyalgia, Lyme disease, chronic fatigue Globe and Mail
     
  11. Kina

    Kina Moderation Team Lead

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    2 million dollars isn't much, but it is better than nothing. Seems British Columbia gets lots of services that other provinces don't. Maybe I should move. Ontario health care is awful, at least where I live. I don't even have a doctor. There are no clinics to go to for specialized care. Related bloodtests are not covered by OHIP.

    GlenP == do you know how this funding came about?
     
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  12. glenp

    glenp "and this too shall pass"

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    Blood tests not covered? I find it hard getting some tests but try and figure it out and can usually get it. My gp is actually an oby but took me on as I needed a physician. He will do what he can. For example free T3 and free T4 have to have a diagnosis written down or it will come back not done. I looked up the codes for vit d tests and asked the doc for it. My physician apologizes and says he knows nothing of cfs but he will try what he can. It seems there are tricks for everything. I try and get bits from everywhere. I do get tests that I dont want, just to keep my doctor happy - like a ct scan of my head, but it is in their protocol. He hasnt denied me anything yet, I have trouble knowing what to ask for.

    How is Jolicoeur doing with research? Are you near Dr Hyde? Alberta has some good research going on. UBC will be having some good research, we have a good guy here and hope that more get interested. I am going to try and talk to someone about having a cardiologist that is more aware, and also help with diets that many of us are on. Dieticians are available for other diets but not for those of us with intollerences. Cardiologists here dont know of dysautonomia nor where the tests are available. The cardiologist that I saw at UBC has only ever ordered one impedience test, and that was not in this country. They need to be made aware of our problems. Most patients go in and take the heart meds the doc prescribes using his testing. I have my own monitor which records and take it in - much different then his test results!!! They need to see these things

    Its going to be a long road

    glen
     
  13. Ember

    Ember Senior Member

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    With respect to the question of how this funding came about, let me hazard a reply.

    If I were to believe the comments on the Globe and Mail article, Id have to think that the funding came about because of a scathing report on Lyme disease.
    The Open Message to the Minister of Health by Mike Farnworth (copied below) seems to confirm this.

    This project, focusing on difficult-to-diagnose-and-treat chronic illnesses, including ME/CFS, has been in the works for some time. But I didnt know anything about the Schmidt Report until now.

    However the funding came about, Im pretty happy about the news of a new clinic and study!


    Open Message to the Minister of Health: Implement the Schmidt Report on Lyme Disease Now
    March 30, 2011

    A confidential Ministry of Health report was released this week pursuant to a freedom of information request.
    The report states that the B.C. Lyme test is inadequate and recommends urgent attention be given to devising better diagnostic and treatment standards. It suggests B.C. should lead Canada in implementing higher standards of care. It recommends we begin treating the chronic form of Lyme disease, as this places a significant burden on patients, who are sometimes given few options or hope.

    As a former Minister of Health, I can tell you its sometimes necessary to modernize the standard of care for emerging diseases. This is one of those times. With global warming, Lyme disease is moving in, big-time. Its now present in communities right across southern B.C. Its damaging more and more families, and B.C. is not moving quickly to improve standards of care.

    As a candidate for Leader who aspires to become Premier, Im giving an undertaking today that we will initiate an overhaul of B.C. Lyme disease diagnosis and treatment standards, based on the directions recommended in the Schmidt report released today. But I also want to urge the new Minister of Health to move forward today.

    Lyme disease was the lead story on the front page of the Vancouver Sun earlier this week: BC Doctors lack ability to diagnose Lyme Disease ran the headline.
    Lyme disease is the fastest growing infectious disease in North America, so how is it our doctors dont have the skills to detect it? In fact, doctors have been taught that we dont have Lyme disease in B.C., that theyll rarely see it, and that they dont need knowledge but should rely on a diagnostic test to prove its there.
    The result is more and more infected British Columbians who are being denied access to treatment and forced to suffer a painful, debilitating illness. Yet Lyme disease, if diagnosed early, can be cured with off-the-shelf antibiotics at a miniscule cost. Giving docs the skills to do just that should be our first priority.

    Our citizens should never be forced to endure treatable illness, nor forced to drain their savings and sell their homes in order to buy care in another country. Thats whats happening here today, and it has to stop.

    We have the skills and innovative research capabilities right here in BC to deal with Lyme disease its time we got on with the job.

    Sincerely,

    Mike Farnworth
     
  14. Wayne

    Wayne Senior Member

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    This is all great news. Regarding $2 M, if each province in Canada did the same, that would be $20 M. If each state in the US did the same, that would be another $100 M. If they would start doing this on an annualized basis, then we're talking about some real money. $2 M does seem rather small, but I think it's a great start. --- Thanks for posting...
     
  15. Ember

    Ember Senior Member

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    Thanks so much for your words of encouragement, Wayne. I agree that it's is a great start, and I'm so glad that it's finally been announced.

    What matters to me is not so much the amount of funding, but the way the money is being spent. The clinic will bring together expertise for the purpose of "accurately diagnosing... conditions, providing treatment and helping with ongoing symptom management." And "the Provinces research study will collaborate with the clinic to examine these illnesses in depth." They acknowledge upfront that they are dealing with "debilitating complex chronic diseases where the cause is unknown, but where it is strongly suspected that an infectious agent may play a role." It's a fine model.

    One of the doctors involved has been a leader in ME/CFS (the lead writer for the Canadian Consenses Document). His involvement gives me great hope.
     
  16. Kati

    Kati Patient in training

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    I have hope that they do not focus on "coping" and "rehab" as their primary focuses, or use methods like "Lightning Process" as the study subject.

    This clinic needs to focus on bio-medical research and aim at treating and curing neuro-immune diseases that are associated with infectious agents.

    I would very much like them to take on the BC Cancer Agency model- where research is an important part, treatments, access to video conferences for patients living far. And the cancer patients have access to an alternative clinic should they wish, and offering alternative treatments (at their own costs). (Just the way it is for our cancer patients)

    I also hope they will consult with patients. Patients should be seen as colleagues or experts in their own fields.

    The new clinic needs to be careful in what it will be called and I would suggest to NOT use CFS at all, start on the right foot and call it ME. CFS is insulting and ensure that consultants do not take us seriously.

    One last thing, they need to form partnerships with WPI, Dr Klimas, Montoya, Peterson and the Alberta group that have done the XMRV study (results should come out soon)

    My 2 cents. I hope they hear us.

    Kati
     
  17. Chris

    Chris Senior Member

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    I suggest we all write to Michael de Jong, the new Minister of Health for BC, to congratulate him on getting this started, and make a few suggestions from our experience on how to proceed--particularly in establishing connections with WPI and the U of Alberta group in Emonton, that includes Gordon Broderick, who is working closely with Nancy Klimas. Best, Chris
     
  18. Ember

    Ember Senior Member

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    This background article, published just before the announcement, should be helpful in the framing of a response. Brian Schmidts report (May 2010) notes that many doctors are skeptical about chronic Lyme disease, partly because the symptoms are similar to other ailments like chronic fatigue syndrome and fibromyalgia.

    Most comments posted in response to the article call for Lyme disease treatment, many praising Dr. Murakami as the only doctor who has helped. The ME/CFS comments would be easy to miss!

    My computer may allow me to post a link to the version of the article that includes comments:

    http://www.vancouversun.com/health/Most doctors trained diagnose Lyme disease/4518329/story.html
     
  19. glenp

    glenp "and this too shall pass"

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    Ember - is it correct that Dr. Carruthers is going to be involved in this clinic that is to be set up?
     
  20. glenp

    glenp "and this too shall pass"

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    Ember

    Bumping this hoping that Ember will see my question.
     

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