1st ME/CFS Canadian Collaborative Conference

It was a good talk, though only peripherally related to ME/CFS
I felt it will be more relevant when we have more treatments available, though its one that more GPs should be attending in regards to their non ME/CFS patients.

 

Thanks @Alvin. Agree. Do you know if his claim is confirmed by a study, or was it just from his experience that he "knew" this as a fact. I got the impression that he told that PWME had more of genetic problems with detoxification than healthy people. I never heard before that this had been studied. If it even had...

 

I don't recall him saying that (then again my memory is shot), his talk was basically a warning to be aware that taking multiple medications can cause dangerous interactions and side effects and that long term use of drugs and especially multiple drugs can also harm patients, which really applies to anyone, someone i know was on Prednisone for decades leading to severe osteoporosis, something that was very preventable.

 

I believe there as a meeting about the Canadian Consensus criteria. But i was not sick back then. It might have been 2003.

 

I thought one of the IACFS/ME conferences was in Ottawa, something like 2011? Early on in my daughter's ME life.

 

Yup. It's a survey!

 

If memory serves, 1989 and 1991.

 

Write-up from Solve on the conference - https://solvecfs.org/first-ever-me-cfs-collaborative-conference-held-in-canada/

 

Its not. I am moderate/severe yet her scale would count me incorrectly.

 

I don't remember it well but she was presenting a scale she thought would quantify severity by time spent in bed vs sitting or standing. I do more sitting then her model would account for and while i lay down often for a few mins here and there i am upright for more hours then the scale would assume given my severity.
Its not a bad idea but i don't think it would be an ideal official diagnostic tool
My OI seems to be less then average, though its more then i thought, i have gotten used to it and mitigate it reasonably well.

 

So also sitting upright? Although I can be up, as in not in bed I don’t tolerate sitting upright feet on floor (at a dinner table type sitting) for very long. I can pass as normal for about an hour doing this and then have to move to a sofa with my feet up as I get a lot of pain or lightheadedness. Scale seems like a good idea based on my personal fluctuations (if in combination with other measures).

@Alvin when you sit, is it upright feet on floor sitting?

 

I'm sure it has merit but some have worse OI then others, i would guess severity vs OI might work better on a bell curve then trying to correlate severity to OI. I could be wrong but thats my personal view.

 

I sit mostly in a recliner, so feet off the floor! Like Jenny, I struggle with my feet flat on the floor for any length of time, so HUA might be a useful measure for me, personally.

If we are supposed to keep our feet off the ground, though, it would be nice to have a study exploring that. Not to measure HUA necessarily, but to give us another tool for pacing properly. That is, of course, if the supposition is correct (which it may not be).

 

Can someone tell me if the conference was filmed ? Does anyone know anything about the future availability of recordings? I tried to email the organisers, and asked on twitter, but nobody replied.

 

Don't think this has been posted elsewhere?

https://www.youtube.com/watch?v=fBO7dtXhnvE

 

https://twitter.com/user/status/1014928706010271746

 

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.