1st ME/CFS Canadian Collaborative Conference

Pechius said:
Does anyone have an idea about main conference recordings?

Website says:
"Thank you for your interest in the conference. We will notify you as soon as the recordings will be available."
https://www.fourwav.es/view/647/info/

It's taking quite a long time. I wonder if they will ever be made available. All my attempts to contact organisers via email or twitter were unsuccessful.
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I wondered as well, if anyone wants to take on asking them that would be great.
Some are unpublished research so they won't be uploading those but some should be perfectly fine to upload.
 
Alvin said:
Its not. I am moderate/severe yet her scale would count me incorrectly.
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Ditto. If by upright you include sitting, I would probably exceed the norm, reaching 23 hours some days, but more generally about the norm of 17 hours. Yet if you exclude sitting I might make half an hour on a good day, as in half an hour standing. During worse periods that half hour is decreased to five minutes. I am mostly housebound, which I think covers severity better, and I am close to the severe end of moderate. However I am now in a subset with both severe orthostatic intolerance and increasingly severe high blood pressure.
 
Tom Kindlon said:
It would be interesting to know. However, one factor may be that there weren't many applications. Over the years, there hasn't been a huge amount of research in Canada.
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There was only one application for the grant.

Applications must score at least 3.5 (out of 5) to be eligible for the funding. The application did not surpass that threshold.

Funding for ME research in Canada is now zero dollars.

Canada has over 580,000 diagnosed with ME - the highest ME rates in the world (we also have highest MS rates).

The only ME research currently conducted in Canada is by an undergrad student collecting QEEG data on ME patients.

Canada's hope for ME research rests not with Health Canada, but on the shoulders of one undergrad student and his eligibility for student loans.

I expressed my concerns about the lack of engagement of the Health Minister and Prime Minister in the ME crisis / epidemic to the Scientific Director of the research institute that houses ME and will be speaking with him tomorrow about potential paths to catalyze change.

There is a faster path to change we must forge.
 
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