Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Do you have fibromyalgia and live in Canada?

Discussion in 'Action Alerts and Advocacy' started by Kati, Jul 23, 2015.

  1. Kati

    Kati Patient in training

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    The Canadian Institutes for Health Research has just emailed requests for patients with fibromyalgia to participate in a survey to set research priorities for FM in Canada. (I would believe that the same process will be applied for ME at a later date)

    If you have fibromyalgia and live in Canada, i urge you to participate and get your voice heard.

    Solving the Fibromyalgia Mystery: Researchers need your help.

    Seeking people living with fibromyalgia, their families, caregivers and health professionals involved with helping them to share what is most important for fibromyalgia research.

    It is anticipated that the findings of the adult fibromyalgia priority setting exercise will be reported to funding and research agenda setting organizations such as the Canadian Institutes of Health Research as well as the major research funding charities.

    The JLA Protocol is posted on CIHR-IMHA’s website (see below)

    Link to the survey: http://www.surveygizmo.com/s3/20573...il&utm_term=0_20a3cd878c-9d8a113e5d-392527846
    Note: this is for Canadians only. Feel free to share with your networks

    More about the James Lind Alliance:

    James Lind Alliance: Adult Fibromyalgia Priority Setting Partnership

    The aim of the Adult Fibromyalgia Priority Setting Partnership (PSP) is to identify the unanswered questions about the management of adult fibromyalgia from patient/caregiver and clinical perspectives and then prioritize those that patients/caregivers and clinicians agree are the most important.

    Contact Information
    Nicole Szajcz-Keller
    Assistant Director
    CIHR Institute of Musculoskeletal Health and Arthritis
    Phone: 204-318-2551
    Nicole.Szajcz-Keller@umanitoba.ca

    Background
    This PSP is a Canadian project overseen by the Institute of Musculoskeletal Health and Arthritis (IMHA) of the Canadian Institutes of Health Research (CIHR), in consultation with the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC), UK. Its aim is to provide an infrastructure and process to help patients/caregivers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest, in order to influence the prioritization of future research in that area. The James Lind Alliance (JLA) defines an uncertainty as a “known unknown” – in this case relating to the effects of treatment. Please visit the James Lind Alliance website for more information about Priority Setting Partnerships.

    Objectives
    The objectives of the Adult Fibromyalgia PSP are to:

    • engage patients, caregivers, and clinicians in a priority-setting exercise that would identify the scope of uncertainties in the management of adult fibromyalgia;
    • agree by consensus on a prioritized list of those uncertainties, for research;
    • publicize the results of the PSP and process;
    • take the results to research funding bodies to be considered for funding.
    Please read the Protocol for more information including partner criteria, a list of steering committee members, and methodology.
     
    ukxmrv, Snookum96, Bob and 1 other person like this.
  2. Snookum96

    Snookum96 Senior Member

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    Ontario, Canada
    Thank you @Kati
    I will definitely check it out!
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Kati
    I'm not cognitively in a place to deal with going through that info at the moment.
    Do you know if there is a deadline for participation?

    I would also possibly find it difficult to answer questions due to having both ME and fibromyalgia (or so the Rheumatologist says I have Fibro) but I can't really tell what is what in terms of symptoms I tend to attribute everything to ME without thinking about it.

    Does anyone have any guidance on this? Not thinking clearly ATM.
     
  4. Snookum96

    Snookum96 Senior Member

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    Ontario, Canada
    Thats a good point I have both as well. I never know what is causing what so might be hard to answer.
     
  5. Kati

    Kati Patient in training

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    It is very interesting as I am told MEFM Action Network is not participating or engaging to this initiative. Their reasons are in the Quest #103 Newsletter, which I do not recall having access, but the #102 is online and the early pages are hinting at what is happening

    http://www.mefmaction.com/images/stories/quest_newsletters/Quest102.pdf

    Personally, I think patients need to voice what needs to be researched in Canada. If physicians had their ways, they would discourage disability insurance for patients with fibro and make patients attend CBT and take anti-depressant. It's quite barbaric.

    Patients should not loose the opportunity to have their voice heard especially as we are the stakeholders. 'Nothing about me, without me'.

    Fibromyalgia is distinguished from ME by pain being the major symptom. Pain must be present on both sides above and below the waiste. The tender points has been lost by the new case definition however it provides another diagnostic tool for physician. Other symptoms usually associate with fibromyalgia is 'brain fog' -cognitive dysfunction and sleep disorder.

    @Snowdrop, I have been reading from dr consultation that I have fibromyalgia as well as ME but I don't have much pain and my #of tender points have been all over the place. i think sometimes doctors do not even know the difference between Me and FM, they lump it into one.

    There was a recent clinical trial from Spain showing that Alzeimer drug (memantine) was being quite helpful in decreasing pain and improving quality of life for patients.

    http://www.ncbi.nlm.nih.gov/pubmed/25218600

    It could be worthy to ask Canadian researchers to look into this.
    And to ask for research that pertains to neuro-inflammation, neuro-immaging, genomics, immunology and perhaps asking for research regarding impact of health care stigma for patients with fibromyalgia.

    Asking for drug trials ( Prigden study (Valtrex +Celebrex)), low-dose naltrexone, and other would seem reasonable to me on a well defined fibromyalgia population.

    Dead last in the priorities should be 'learning how to cope', education programs, CBT and looking into psychiatry.

    I hope it helps. I find it incredibly sad that MEFM Action Network is not involved in this project. I know that they have the well-being of the patients at heart, but from my point of view, not being at the table is not good at all.
     

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