1st ME/CFS Canadian Collaborative Conference

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...
 
Helen said:
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...
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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 have just read the report and picked out this as of interest in assessing severity levels in ME patients:
Lucinda Bateman, MD, Bateman Horne Center, came to Montreal with the goal of “bring[ing] a message to clinicians about the tools we [currently] have in the clinic” , including the NASA lean test, that approach the level of objectivity in diagnosis. She mentioned her use of an Hours of Upright Activity (HUA) log and how sharply it delineates functionality in ME/CFS patients as compared to healthy controls – 1-7 hours per day of HUA in ME/CFS patients, as compared to approximately 17 hours for healthy controls.
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I have not heard of anyone using 'hour of upright activity as a severity measure. It seems like a potentially useful one to me.
 
Trish said:
I have just read the report and picked out this as of interest in assessing severity levels in ME patients:

I have not heard of anyone using 'hour of upright activity as a severity measure. It seems like a potentially useful one to me.
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Its not. I am moderate/severe yet her scale would count me incorrectly.
 
Trish said:
Thanks @Alvin, that's interesting. I was basing my comment on the sentence I quoted, I haven't seen the detail of how she uses it. Perhaps it's only relevant to those pwME who have a major problem with orthostatic intolerance. Can you explain more?
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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?
 
Jenny TipsforME said:
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?
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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).
 
I think this may be a case of a measure that is useful for an individual to track their own progress, rather than one to compare the severity of ME in different individuals.

So for example, if I look back at my progression from mild through moderate to severe, HUA would provide a useful graph with a downward slope as the overall trend, with short and long dips along the way for PEM and bad crashes. I kind of wish I did have such a chart. It would be a great way of visually illustrating the pattern of my declining health.
 
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.
 
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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