Open Norway: Study of Daratumumab Injections for Patients with Moderate to Severe Chronic Fatigue Syndrome, 2025

Utsikt said:
Mine is terrible at it
Click to expand...

And all the ones I've had. They'd tell me I was in REM sleep when I was reading, etc.

That's what prompted me to look up how realistic it was to get any kind of useful information from them, and the answer was a resounding No. There was even concern among doctors that people were worrying about their sleep based on information from devices that can do no better than guess.

Thankfully I now have one that allows you to switch off all the so-called health monitoring. I only wanted a watch with a mobile SIM so I could call for help if I had a bad fall; turned out they all assumed I was going to consent to intrusive measurements as well. I got so fed up the first one that I started putting a folded tissue between the watch and my wrist to stops the sensors working.
 
Kitty said:
And all the ones I've had. They'd tell me I was in REM sleep when I was reading, etc.

That's what prompted me to look up how realistic it was to get any kind of useful information from them, and the answer was a resounding No. There was even concern among doctors that people were worrying about their sleep based on information from devices that can do no better than guess.

Thankfully I now have one that allows you to switch off all the so-called health monitoring. I only wanted a watch with a mobile SIM so I could call for help if I had a bad fall; turned out they all assumed I was going to consent to intrusive measurements as well. I got so fed up the first one that I started putting a folded tissue between the watch and my wrist to stops the sensors working.
Click to expand...
imagine if that was info going back to an employer and your job involved hours of reading at home. It’s not really funny but a warning I guess
 
bobbler said:
imagine if that was info going back to an employer and your job involved hours of reading at home. It’s not really funny but a warning I guess
Click to expand...

Also, it recorded the number of flights of stairs I had climbed each day. In my level-access bungalow that doesn't even have a doorstep, and in shops I visited in my powerchair.

I think it was recording relative altitude, possibly even when I was driving (I live on top of a hill). It can't have been movement-based because I never do any kind of stair-climbing action. But I was horrified when I saw the records—imagine DWP got hold of that? I'd have been questioned under caution and need to find some way to prove I wasn't climbing stairs.

A helpful chap in the customer community for the device told me how to make sure it wouldn't record any more movement data and how to delete everything it had already captured, but it was pretty scary to discover it was set to record all that by default.
 
Jonathan Edwards said:
They look to be the wrong way around to me.
Click to expand...
Isn't the red one just showing that slowly the IVIG (they probably got prophylactically) is being cleared from the blood in this 6 week period?

And the green one showing that their IgG (without IVIG) is fluctuating between 6.8-7.5 g/L (on the edge of being low)? I would have expected Daratumumab to reduce the IgG more, but we also don't know their baseline I guess. If it's 14-15, then the shown values could show efficacious killing (iirc it was about 50-60% in the Fluge trial)?
 
rapidboson said:
Isn't the red one just showing that slowly the IVIG (they probably got prophylactically) is being cleared from the blood?
And the green one showing that their IgG (without IVIG) is fluctuating between 6.8-7.5 g/L (on the edge of being low)?
Click to expand...

It is all weird.
The daily steps seem much too consistent to me. My daily steps go up and down a lot more than that. Even if it was just the steps to the dining room and so on I would expect an odd day more and an odd day less.

The IgG 'with IVIG' seems to fall steadily, much as one might expect without IVIG. The without IgG goes up and down like a yo-yo. Either that is just lab variation for samples that have not been run in the same batch - in which case it is meaningless, or maybe it is actually the with IVIG trace which would make sense if IVIG was being given about every other day but that would be odd. I may be missing something obvious but I cannot make sense of it.
 
Jonathan Edwards said:
It is all weird.
The daily steps seem much too consistent to me. My daily steps go up and down a lot more than that. Even if it was just the steps to the dining room and so on I would expect an odd day more and an odd day less.

The IgG 'with IVIG' seems to fall steadily, much as one might expect without IVIG. The without IgG goes up and down like a yo-yo. Either that is just lab variation for samples that have not been run in the same batch - in which case it is meaningless, or maybe it is actually the with IVIG trace which would make sense if IVIG was being given about every other day but that would be odd. I may be missing something obvious but I cannot make sense of it.
Click to expand...

Agreed, it looks weird. If the injection was not on the far left but even before and we don't see their IgG baseline without IVIG, it could make sense? If we're only looking at some 6 week timeframe that starts 2-4 weeks or so after the Daratumumab injection?
 
Posted on behalf of @MSEsperanza:

I think this means I need more daratumumab. The question is how... Blue: daily steps Red: IgG with IVIG Green: IgG without IVIG
Click to expand...

Is it possible that the graph shows data from the study / from two group samples rather than data from an individual patient?

So are there perhaps two treatment groups--one who gets IVIG in addition and one who doesn't?
 
Kitty said:
Also, it recorded the number of flights of stairs I had climbed each day. In my level-access bungalow that doesn't even have a doorstep, and in shops I visited in my powerchair.

I think it was recording relative altitude, possibly even when I was driving (I live on top of a hill). It can't have been movement-based because I never do any kind of stair-climbing action. But I was horrified when I saw the records—imagine DWP got hold of that? I'd have been questioned under caution and need to find some way to prove I wasn't climbing stairs.

A helpful chap in the customer community for the device told me how to make sure it wouldn't record any more movement data and how to delete everything it had already captured, but it was pretty scary to discover it was set to record all that by default.
Click to expand...
:eek: Someone is about to give me an old apple watch, because i cant bear an alert thingy but keep falling down so i wanted to be able to make calls from it

But i useless with tech! will have to make sure it doesnt record inaccurate stuff i dont want!
 
Last edited:
JemPD said:
:eek: Someone is about to give me an old apple watch, because i cant bear an alert thingy but keep falling down so i wanted to be able to make calls from it
Click to expand...

I have it for the same reason. I have a falls alarm, but the pendant has a metal chain that I'm allergic to. It lives on the bedside table and only gets used to test the system.

The watch can be voice activated—so it doesn't matter if your arms got pinned under you when you fell, or your glasses slipped off and you can't see what you're doing—and it has a silicone strap that can be worn 24/7.

The watch doesn't record all this stuff on its own memory, by the way, it uses the iPhone it's linked to.

It was easy to turn it off once I had the instructions, but there was a step about backup to iCloud that I could have missed if tried to fathom it myself—I was new to the system then and didn't quite get it. I can look easily it up again, so DM me if you have trouble.
 
Kitty said:
Also, it recorded the number of flights of stairs I had climbed each day. In my level-access bungalow that doesn't even have a doorstep, and in shops I visited in my powerchair.

I think it was recording relative altitude, possibly even when I was driving (I live on top of a hill). It can't have been movement-based because I never do any kind of stair-climbing action. But I was horrified when I saw the records—imagine DWP got hold of that? I'd have been questioned under caution and need to find some way to prove I wasn't climbing stairs.

A helpful chap in the customer community for the device told me how to make sure it wouldn't record any more movement data and how to delete everything it had already captured, but it was pretty scary to discover it was set to record all that by default.
Click to expand...
New Fear Unlocked.

I hadn’t even thought about in relation to disability insurance.

I haven’t actually walked in 2 years. Most I do is ride on a deskchair from my bed to the bathroom.

But my fitbit seems convinced I get a hundred or so steps a day? Half of them at night? I wonder if I run during my dreams!
 
You must log in or register to reply here.
Back
Top Bottom