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Canadian Institutes of Health Research "Catalyst Grant"

Discussion in 'General ME/CFS News' started by Old Bones, Mar 2, 2016.

  1. Old Bones

    Old Bones Senior Member

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    Here's the content of an email received this morning from Margaret Parlor, President of the National ME/FM Action Network:

    "Yesterday, the Canadian Institutes of Health Research, the federal government's health funding agency, announced a competition for a “catalyst grant” for ME/CFS. The CIHR grant would pay up to $200k per year for 3 years.

    The purpose of the grant would be to build a collaborative network of researchers and research users. The network would be national in scope and would encourage interaction between researchers and stakeholders (“clinicians, decision-makers, industry, patients, and other knowledge-users outside of the academic community”).

    The announcement sets five objectives for the ME/CFS project:

    • To create an interactive and coherent Canadian network in ME/CFS that will tackle, in a coordinated manner, the clinical research challenges posed by this spectrum of chronic disabling disorders.
    • To develop multiple population-based patient cohorts for translational research in ME/CFS.
    • To facilitate national collaboration, resource sharing, capacity building and dissemination in priority research areas.
    • To provide the needed infrastructure around which to undertake therapeutic and diagnostic clinical studies in Canada. In addition, this network will set the stage for potential future international collaborations.
    • To advance research uptake, training, and knowledge translation in ME/CFS across multiple disciplines with a focus on expediting knowledge uptake to mobilize and build the research community.
    The principal applicant must be an academic researcher.

    The application deadline is April 12th. Funding could start in August of this year.

    The National ME/FM Action Network has been pressing CIHR for research funding for several years. In a letter to the President of CIHR in November 2012, we emphasized the lack of research for ME/CFS and FM and asked CIHR to develop robust research programs. We suggested a target of $10M in dedicated funding for ME/CFS and another $10M for FM. In later correspondence, we asked for the establishment of a separate institute because of the challenges in this area.

    There has been little direct communication between CIHR and our organization over the past year. We were not consulted in any way about this announcement. Our reaction is that it is wonderful to see funds being allocated to ME/CFS research and attempts being made to build research infrastructure and dialogue. This work has to begin, it has to begin somewhere, and starting with a network is a good idea. However, we note that the objectives of this competition are extremely ambitious considering the amount of funding and the underdevelopment of the ME/CFS area. We anticipate that many challenges will be encountered. We are also concerned that the ME/CFS grant announcement uses the term “chronic fatigue syndromes” (plural) twice, suggesting that it is not focused on ME/CFS alone.

    We look forward to watching this competition evolve. It will be a learning process which will help point research in the right direction.

    You can view the CIHR funding announcement here."

    A grant of "up to $200k per year" is far less than Canadian ME patients would have hoped for, and deserve, but at least it's a start.







     
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  2. helen1

    helen1 Senior Member

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    Very ambitious goals for $200k. And “chronic fatigue syndromes” (plural) is sure a red flag. Do we know of any academic researchers in Canada that have done good work??
     
  3. Kati

    Kati Patient in training

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    One can only hope there will be applicants to this grant and that the applicants do not have experience into psychiatry, coping, CBT, self-management research. I also hope that they have a capacity for leadership, assertiveness and ressourcefullness. Ability to do public speaking would be an asset.
     
    Last edited: Mar 2, 2016
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  4. *GG*

    *GG* Senior Member

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    10 Million a year for ME/CFIDS and for Fibromyalgia would be nice, as long as it was used to do good studies, and not garbage :woot: Also like this because it will put the USA to shame for how much they dedicate to ME/CFIDS research!:devil: Not sure about Fibromyalgia:nerd:

    GG
     
  5. BurnA

    BurnA Senior Member

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    Its a step in the right direction but a long way to go.
    The aims are ambitious but also a bit vague if you ask me. Is this funding for infrastructure and collaboration efforts only, not directly for research ?

    The best way to "advanced research uptake" is to provide more funding.

    Still, everything like this must be viewed positivly.
     
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  6. Kati

    Kati Patient in training

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    Everything will depends on who is the successful applicant. I hope this person is not into 'holistic'. We need science.
     
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  7. Old Bones

    Old Bones Senior Member

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    I did a search of "Canadian ME/CFS researchers", and the only notable website that involved, or said it involved, research was Byron Hyde's Nightingale Research Foundation (http://www.nightingale.ca/). I've been aware of Doctor Hyde from the very early years of my illness, but don't know how active he is in the field these days. My sense has been that he's "on the fringe" of research (i.e. not considered in the core group). Perhaps someone else is qualified to comment.

    Also, it seems Canada's main contribution to the ME/CFS field is involvement in two of the most-respected criteria worldwide. For those new to ME, they may be found at:

    http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf
    http://www.name-us.org/defintionspages/DefinitionsArticles/2012_ICC primer.pdf

    Doctor Bruce Carruthers was involved in drafting/editing both documents. I've always had tremendous respect for him, and have appreciated his accurate understanding of the illness.
     
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  8. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I want to be joyful, but there are too many red flags.

    The short time line to submit applications, the failure to consult with the community, the piddling amount allocated over 3 years, pluralizing 'syndromes', are all indicative of a poorly conceived grant and conceptualization of ME.

    It looks like the CIHR has some funds left over for catalyst grants and they are throwing a few crumbs our way. We are an after thought.

    I see 1 of 2 outcomes:

    - they receive no applications
    - the grant has already unofficially been awarded and the public request for submissions is for public relations purposes

    I will be very interested to learn of the number of applications.

    I will bet dollars to donuts that if the grant is awarded, it is to an insider with psychobabble leanings.

    I hope I'm wrong, but the CIHR has only failed us.
     
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  9. Kati

    Kati Patient in training

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    I am not sure this is something we learn about, the number of applications.

    There was another grant last year for ME- not sure what happened to it.
     
  10. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    I'd be into supporting a researcher for these 6 weeks in developing and submitting an application just so that one gets submitted (not that it would necessarily be awarded, even if the only application).

    But I wouldn't know what researcher to contact to support an application.

    Any ideas?
     
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  12. Snowdrop

    Snowdrop Rebel without a biscuit

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    This is a concern. I think that maybe we should put together an information pkg and letter stating what we as patients know about our illness +what else is known research wise and how we hope for them to proceed with an emphasis on what we most definitely don't want to see happen.

    I'm prepared to provide some of this material and contribute to a letter. Unfortunately not today--but I hope I could do this sometime this week.

    finding a suitable candidate to do the research may prove problematic too.
     
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  13. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    More info:

    Eligibility criteria for all CIHR research funding programs apply. The business office of the institution of an eligible Nominated Principal Applicant generally administers CIHR funds. Refer to the Individual Eligibility Requirements regarding the eligibility requirements for individuals and institutions.
    Eligibility to Apply
    For your application to be eligible:
    • The Nominated Principal Applicant must be an independent researcher with an academic appointment at an eligible institution.
    • In addition to the NPA the Network must include a minimum of one representative from the following groups:
      1. New investigator (i.e., an independent researcher within the first five years of their independent career)
      2. Patient/family representatives/informal care providers
      3. Health care professionals
    • The Program must be national in scope. The program must include representation from all three regions: Western (BC, AB, SK, YT, NT) Central (MB, ON, NU) and Eastern (QC, NB, NL, NS, PE).
    • The network must bring 20% of the total project budget* as cash and/or CIHR eligible in-kind contributions from outside sources.
    *Example: 20%:
    If you are requesting $600,000 from CIHR, the Network would have to bring in an additional $120,000 in cash and/or CIHR
    eligible in-kind support for a total project budget of $720,000.
    Networks already receiving federal funding support at the time of the funding start date are ineligible (e.g., Networks of Centre of Excellence Knowledge Mobilization, etc.).


    The additional 20% funding required by applicant seems unusual.
     
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  14. shannah

    shannah Senior Member

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    Solve CFS has done work with McGowan in the past. Wonder if there's other possibilities to cultivate here that would qualify. In the summer of 2014, they wrote:

    "The Solve ME/CFS Initiative will continue to partner with McGowan and his team at the University of Toronto to further this exciting work of epigenetics and ME/CFS. This field of research holds promise for identification of diagnostic biomarkers and potential treatment and interventions for ME/CFS. For right now it is further demonstration of the indisputable biological basis of ME/CFS."

    http://solvecfs.org/breaking-news-chemical-changes-in-immune-cell-dna-from-mecfs-patients/
     
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  15. shannah

    shannah Senior Member

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  16. *GG*

    *GG* Senior Member

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    How about Dr Barniuk, he is doing studies in the USA currently. Do the studies need to be done in Canada? I think that would depend upon what the research is looking for.

    GG
     
  17. Kati

    Kati Patient in training

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    The BC crew may be interested in this. David Patrick would be well suited. But it is up to them, whoever may be interested.

    As an aside, it is unrealistic that patients think we have control on the decisions that are being made at CIHR. We don't. We can hope. We can express our views, but in the end, they do what they want. They usually don't answer emails.

    I would not be so critical about the nomenclature at this point. The name of our illness suck. Mentioning ME raise an eyebrow and a smirk from the medical community. Until we know more about the pathology, we are stuck in no man's land.
     
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  18. BurnA

    BurnA Senior Member

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    This is worrying and disappointing. Would it have hurt them to even tell them about this in advance never mind ask them for input ?

    Given that people here seem to be struggling to think of researchers who may be interested in this, it makes you wonder if there was any expert or outside advice either sought or given prior to this announcment.

    Was this a case a money left over and is this an afterthought ? Certainly doesn't come across as a well thought out plan. I hope I am wrong and as I said before it's still a positive.

    Like everyhthing with this illness, details are sketchy.
     
  19. Daffodil

    Daffodil Senior Member

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    if Canada doesn't give a sh--t about our illness, how about paying for some of our medical bills when we have to go out of country for help?

    ugh. I used to love Canada...
     
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  20. Old Bones

    Old Bones Senior Member

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    Or at least pay something towards the many lab tests available elsewhere, but not in Canada. I have an excellent GP who is willing to put considerable time into studying my health issues during her "off" hours. However, I can't expect her to try off-label treatments without some indication we're on the right track.
     
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