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Not much ME/CFS research is funded in Canada (as of March 2008)

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Jan 22, 2010.

  1. Chris

    Chris Senior Member

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    Canadian Registry

    Kati, you are right--the website appears closed-but the organization has contact info--address and phone--will phone and/or write tomorrow. Chris
  2. Dolphin

    Dolphin Senior Member

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    I have no confidence in the 4-10 million figure in the US for ME/CFS. The CDC started using the empiric/Reeves criteria which are a load of rubbish. They give a figure of 2.54% or 1 in 40 adults. But when you look at the definition, you don't have to have anything close to ME or CFS to satisfy it. It's a joke.

    Better figures I think are figures from using the Fukuda definition. The CDC found a prevalence of 0.235% (235 per 100,000) and Leonard Jason found a prevalence of 0.422% (422 per 100,000) in adults. These figures were got by randomly phoning thousands of households and bringing in for further testing people who sounded like they might have CFS (Fukuda definition). The lower figure found by the CDC may be because they had some weird exclusions (e.g. the Romberg sign, which many people feel is positive in people with M.E.). The figures may be slightly on the low side as they also tended to exclude people if they had other conditions while you can have something else as well as ME or CFS. I'd reckon 0.3-0.5% are reasonable figures for CFS (Fukuda definition). Most of these people weren't diagnosed - only 9% of the people in the Leonard Jason/Chicago cohort had been diagnosed and 16% (IIRC) in the CDC sample.
  3. boomer

    boomer Senior Member

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    Guess what? I had written to the Minister of Health to mention the neglect of research funding for XMRV and I just got a letter back. The key line is at the end of the third paragraph. It reads:

    "While the CIHR has not yet funded research on the
    relationship between the XMRV and CFS, it would welcome funding applications
    from researchers interested in pursuing further work in this area of
    research."
    That sounds rather good to me!! Hope we can get some research requests for funding for XMRV research in to them. I'll post the whole letter later. They forgot to email me the second page and I asked for that. The rest of the letter is the sandard you know : We funded arthritis for pain $x ...
    By the way, CIHR stands for Canadian Institutes of Health Research.
  4. Kati

    Kati Patient in training

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    Thank you Bommer, very interesting and looking forward to see your letter- It is time that Canadians have access to god health care and medical attention for this disease.
  5. Sing

    Sing Senior Member

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    Hi! I just started a new thread about the 4 day event in Ottawa next Sept, 22, 2011:

    The 10th International IACFS/ME Research & Clinical Conference, Translating Evidence inot Practice: Chronic Fatigue Syndrome, Fibromyalgia, and Related Illnesses

    go to www.www.mefmaction.net for more information

    Wish I were going. Maybe I will be!

    Sing
  6. julius

    julius Watchoo lookin' at?

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    Hey,

    I have discussed this via email with one of the members on this thread (I won't say who just in case they don't want me to) but we discussed the need for someone (ie; we the sufferers) to start taking action. We thought at the time it would be best to hang on a bit to see where the replication studies go with the XMRV finding.

    This would serve two purposes;

    1) we will have a better idea where to focus our efforts
    2) it would give a solid backing to our arguments

    However, if you guys want to start sooner...count me in. I'm pretty p'od and fed up. I have a lot of fight in me.

    One good thing we have going is that the Canadian Consensus is in fact the Canadian Consensus. It's our government that sponsored the work, and is the governments official document on the disease. We are the only country who can say that. So that's half the fight done for us already. We don't have to worry too much about the definition, like our friends in the UK, or even those nasty Yanks;).

    So, anyways...I'm in and I'm foaming at the mouth. Just not sure whether we start now or wait a bit.
  7. Kati

    Kati Patient in training

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    Julius, from the Mikovits conference on January 22nd, apparently she recieved a call from someone in Canada I believe regarding the blood supply. I'd be curious to know who is this woman and which organization is she representing. Dr Judy also mentioned Dr Stein who contributed some blood samples of CFS patients I believe.

    i am certainly willing to pass in action when time comes- I have great confidence in the work of WPI but maybe we should wait for a positive replication study?

    Of note Canada (Ottawa) will host the 2011 IACFS conference, and needs to raise 150 grands !
  8. julius

    julius Watchoo lookin' at?

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    One thing that's been on my mind for a long time is the idea of taking legal action. Writing letters to MP and whatnot is great, and I am all for it, but ultimately, you have to convince someone who probably doesn't want to be convinced. Especially when there are powerful lobby groups involved. One kickback is louder than a thousand signatures...if you know what I mean.

    If you can find a legal angle, then you force the concerned parties to pay attention. I don't know much at all about the law and exactly what angle could be taken. Are there any Canadian lawyers on this site?
    Primarily I'm thinking of some sort of class action?? Anyone??

    This is totally just throwing ideas around. So shut me up if I'm talking nonsense.
  9. boomer

    boomer Senior Member

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    Canadian Government Open to Applications for CFS and XMRV

    Ok, here is the letter from the Honourable Leona Aglukkaq, Minister of Health. I have xxx'ed out personal information. They only sent the first page and I emailed back for them to send the second page. I have sent letters in the past but this one is different in that the intent is clear they would welcome applications for research for xmrv and cfs (last line of 3rd paragraph):

    Link to letter:
    http://www.justworkorders.com/xmrv.pdf
  10. Kati

    Kati Patient in training

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    Julius, I totally agree that approaching our MP may not be helpful unless the said MP is personally touched by CFS in his/her close family. Petitions would not be my cup of tea either- A class action would make decision makers listen carefully. I am not totally sure how one initiates class action. One good way to get started would be to approach one of the disability lawyers that are sympathetic to our cause.

    The other angle we can approach our cause is from the charter of rights. We pay our fees for health care. Why on earth can't we get access to it and why can't we be taken seriously- for a lot of us anyways. Why is is that HIV get all this funding but CFS got 800 thousands since 2000 despite having a bigger population of sick and disabled people some of them sick since the early 1980's?

    Maybe both ideas join together and a lawyer could start working with a group of us, with perhaps some of the goals could be:
    1- Funding for SERIOUS research for CFS.
    2- Funding for out of town recognized treatments from recognized specialists until they become available in town
    3- Compensation for those that have been sick all these years and been told there was nothing to do
    4- Mandatory education for ALL medical staff about CFS from a reliable source (not the CDC, not from England, not from a psychiatrist other than Ellie Stein) with details on what they are learning (!)
    5- Clear directives for patients to complain about the health care they recieve should it lack professionalism, with punitive actions towards the offenders- it seems to be absent here, and in general unless it's a sexual offense, all the doctors get is a slap in the wrist or nothing at all.

    Just my 2 cents. I am certainly willing to take it to the next level, on the provincial and federal level.
  11. julius

    julius Watchoo lookin' at?

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    Just read your letter Boomer. That's promising. I guess we should contact all the universities with departments that might be interested in such research. I'm sure their all interested in $$.
    I'll start making a list of Uni's.

    BTW- $87 000 per year for the past ten years....pathetic!
  12. julius

    julius Watchoo lookin' at?

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    Kati,

    I like what I'm hearing. Those make up a good groundwork of goals/demands. I think I would personally put education of doctors at the top. Compensation is also good, because if there is a potential for a big payout, we might be able to find a lawyer who would waive their retainer. That's what makes class action so intriguing. I'm unemployed and broke, I can't afford to pay a lawyer (well, Lionel Hutz maybe).

    If there is an interest in going this route, maybe we can regroup on a less public medium to discuss ideas.

    Maybe we should also start another thread...Looking for Canadian ambulance Chasers
  13. boomer

    boomer Senior Member

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    Julius, you mentioned about contacting the univeristies. I would think the best expertise might lie with bodies that research HIV/AIDS across the country. I do not know any of these institutions. Does anyone know of an AIDS research body in Ottawa? perhaps Ottawa University? Dr. Paul Jolicoeur knows already.
  14. julius

    julius Watchoo lookin' at?

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    I haven't started my search yet. We just moved so I'm in the middle of unpacking. I just can't help dipping into these forums a couple times an hour. I think addiction to Phoenix Rising is a new symptom of XMRV.

    HIV/AIDS would be a good place to start. I heard several of the doctors and researchers talking about XMRV mention that HIV researchers are pretty bored and looking for new projects.
    I'm thinking any place with a virology department, infectious disease, immunology, neurology(?), I'm sure there are several others.

    Your first post in this thread mentioned the physiology dept at calgary. So we know at least someone there is interested in the subject. Maybe that researcher could act as a point man and talk to some of the other depts at the Uni.
  15. Dolphin

    Dolphin Senior Member

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    Point of information: it was since 2000 (if you edit your post, I can delete this message).
  16. Dolphin

    Dolphin Senior Member

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    I have found that looking for education can be dangerous if you are not in control of the information. "Evidence based medicine" tends to say that Graded Exercise Therapy (GET) and CBT (Cognitive Behaviour Therapy) based on GET have been shown to work and nothing else has so GET and CBT based on GET should be recommended, other things should be recommended against. While if patients/patient organisations can control the information, it can be good.
  17. Dolphin

    Dolphin Senior Member

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    Well done on this.
    I hope page 2 gives a list of the money that has already been given.

    Or if not, I for one would be interested if somebody could request the information.

    It is not unusual for a lot of "bad" research to be funded by governments.

    It would be interesting to see if people want more of the same or if people want to object to what the money has been spent on and the direction it has been going (and might continue to go).
  18. Dolphin

    Dolphin Senior Member

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    What people have found interesting to do in the UK is using Freedom of Information legislation ask about how many grant applications have been submitted and information on these (they most likely won't give names but can give general areas). There wasn't a huge number of biomedical requests going in but they were all being turned down.
  19. Kati

    Kati Patient in training

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    It will be interesting to see what HIV doctors think of a new retrovirus and whether they will embrace treatment of a new retro-virus. In my opinion they are likely the best people to treat us with the amount of knowledge they got on retrovirus. The big hurdle is embracing the disease, which has a terrible name that makes most doctor cringe and chase you out of their offices. I personally have tried to contact an HIV dr by e-mail and didn't get any answer back. Vancouver (where I live) has a specialized HIV research center due to our high prevalence of homelessness and IV drug user amongst other things. My rheumy works in the same hospital than they are and I will find out at my next apt in February whether she managed to stir interest from them with the October Science article.

    The second body of professional I would try to approach would be molecular biologists, immunologists, virologist, infectious diseases. As the replication studies come through, perhaps we should come up with a "dossier" relevant article, intro to CFS, history of disease, numbers, etc and present that to our nearest university to see interest.

    Perhaps we could take on example of Emma-Kate in New Zealand who has a lunch date with a prominent researcher in NZ who is interested to do a replication study? :Retro smile:

    I personally think that if we are waiting for drs to initiate the ball rolling we will wait forever.


    ETA Julius, our posts seem to have crossed, and it seems that we are on the same page!!!
  20. boomer

    boomer Senior Member

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    Tomk, specifically she mentioned research on xmrv and cfs. I just found page 2. It's in pdf so I need a little help getting it onto a web page for viewing. It might take 10 minutes.

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