Millions Missing Canada was just alerted that the Federal Health Minister will be in Toronto this Sunday for a town hall to take questions from the audience. We're bringing Millions Missing Canada shirts for visibility, info about ME, and some prepared questions to share so that we have multiple questions about ME, but from different people. I called the local host MP (Rob Oliphant) to request a quick meeting with the Minister before the town hall but they said her schedule is too packed. I further requested that the Minister be made aware that we requested this meeting so that she is fully informed and that the tone of the town hall will be affected. What do you want to ask the Minister? Please join us and make ME visible to Health Minister Petitpas Taylor. Let us know if you can make it so we can coordinate and keep you updated (like if we get a meeting with her): MillionsMissingCanada@gmail.com cheers, Scott
When will Health Canada be proactive and initiate up to date CDC- type training for all health care providers? Why has Health Canada not followed the lead of the US in at least informing health care practitioners that ME is a very disabling biomedical disease (and just letting the CIHR do it in a newsletter)? When will Health Canada endorse the documentary Unrest, as part of continuing medical education for health care providers? When will Health Canada provide research funding for ME commensurate with disease burden and numbers of Canadians effected? Why has Health Canada stalled on these initiatives? Who is Health Canada benefiting? Despite Health Canada being involved in the initial phases of development of the Canadian Consensus Criteria on ME/CFS in the very early 2000s, why did this Ministry not endorse this case definition, and inform physicians of this new definition? (see page iv of the CCC Overview for a summary of HC's involvement: http://mefmaction.com/images/stories/Overviews/ME-Overview.pdf Why did Health Canada support Cochrane reviews on GET and CBT? Why has Health Canada neglected over 500,000 citizens with this very debilitating disease that leaves 75% unable to work and 25% house bound or bed-ridden? Why is Health Canada leaving information about ME up to the Canadian Institutes of Health Research? Why is Health Canada holding back on informing health practitioners about this disease? Why is Health Canada not requiring that all health care providers, especially physicians take appropriate training about this illness? There are probably lots more questions.... Thanks @ScottTriGuy !!!!!!!!!!!!! ETA: Why has HC not reached out to universities to have them modify their training, or complete lack of training in this area?
Why when one looks up ME/CFS on the Health Canada website one of the main pages of info has been archived, and other info while important does not clearly define a case definition, message to physicians etc. https://www.canada.ca/en/public-hea...ique-syndrome-myaligic-encephalomyelitis.html ETA: Why isn't the HC website on this prevalent disease up to date, with the appropriate biomedical info and references for further research?
Hope they don't close down the meeting; similar to the protest a couple years ago. Way to go @ScottTriGuy and Millions Missing Canada!!!
They are in process of updating the pages, but kind of fumbled the ball by not putting up a note saying such. How much detail they'll go into, I'm not so sure.
@ScottTriGuy Thanks. I thought that's what they were doing, but it's been quite a while without new and correct info up. Also, does give one pause to see one of the main pages archived with no notice anything else is being worked on. Hope the new material will be good. Thanks, cheers.
You'd think they'd have realized that by disappearing those pages, it looked like further proof the govt is trying to invisibilize ME / patients.
Current funding is zero dollars. I would say commensurate funding compared to conditions like HIV or MS is XXX dollars. The question is what would have to be done by them to get ME to this level in the next 5 years and what are they willing to personally do to make sure it happens. And with interim targets, say 20% of that level increase per year? Embarrass them publicly. Not because you enjoy humiliating them but to add pressure. Ask them if they are around next year will they still tell you it can't be done or will they be able to say we are 20% there? You can also point out economic losses and how research and a treatment would cost a small fraction of the economic losses which would also reduce government expenses by disability programs, those who don't throw patients up the creek without a paddle and deny benefits. If there are any stats on this that would be nice to throw in as well.
Good news - the Health Minister invited us to meet with her in Ottawa - I will follow up today to narrow down day and time. I would say almost half the questions to the Minister were from ME patients, so we had a very good turnout. Another small step forward, with many more to go. There are some pics and videos clips on our Facebook page: https://www.facebook.com/MillionsMissingCanada/
