Utsikt
Senior Member (Voting Rights)
I’m optimistic, especially if DecodeME delivers something they can use to show that ME/CFS is a real disease in they eyes of lay people.Sadly a big “if”
I’m optimistic, especially if DecodeME delivers something they can use to show that ME/CFS is a real disease in they eyes of lay people.Sadly a big “if”
Has data on the 4 people with ME/CFS following Covid that weren't part of this study already been presented?
I hadn't heard about this! Was this Fluge and Mella too?
In a new amendment to the present study, we aim to test this by including four new patients with ME/CFS following a SARS-CoV2 infection who fulfil the trial inclusion criteria, and who have baseline NK-cell numbers above 125 (x106/L). In this amendment, the daratumumab dosing schedule has been reduced. These data will be published later as a case series. Possible interventions for antibody-targeting therapies in Long COVID have recently been summarized (60).
I find there is too much variation day to day, and somewhat week to week, and month to month, but monthly tracking seems to work well when compared to the previous year (I have seasonal variation). So long term follow-up is really important for treatment studies with minor or moderate effect. The only downside to tracking activity is a change of recording device seems cause a a big jump - I've seen 10-20% difference.In general I like the idea of using steps as an activity metric.
For context: The weather in Bergen is atrocious - the city is by the coast and surrounded by seven mountains so it rains a lot. Like ~2/3 of the year has rainy days.In general I like the idea of using steps as an activity metric.
I think steps is a fine metric for somewhere like Bergen where it never gets very hot and it never gets very cold.
I find there is too much variation day to day, and somewhat week to week, and month to month, but monthly tracking seems to work well when compared to the previous year (I have seasonal variation). So long term follow-up is really important for treatment studies with minor or moderate effect. The only downside to tracking activity is a change of recording device seems cause a a big jump - I've seen 10-20% difference.
Most people with ME doesn’t move that much. On average patients would move more if they are significantly better. Perhaps one person won’t, but on average you would see people moving more.It would help if it had some context too.
It's probably natural for most people to increase their steps if their capacity's better, but what if instead of going out for walks and visits someone was aching to pick up their studies again? Their steps could decrease by 50%; from that measure alone it'd look as if the treatment made them worse, when actually they improved by half.
For context: The weather in Bergen is atrocious - the city is by the coast and surrounded by seven mountains so it rains a lot. Like ~2/3 of the year has rainy days.
We usually say «there is no bad weather, only bad clothes» (it rhymes in Norwegian).I stand corrected! But I think Norwegians don’t mind the rainy-ish weather. I remember hiking somewhere in Norway on a drizzly day and the trail was packed.
Correct me again if this is a malicious or false stereotype!
Can anyone translate this paragraph into normal English?
The problem with steps as a metric is it only partially represents activity. It could be as someone improves they reduce steps as they are more capable of doing mental tasks and focus on some of these. So steps should be useful but we need to consider them in the context of overall energy usage.In general I like the idea of using steps as an activity metric.
I think steps is a fine metric for somewhere like Bergen where it never gets very hot and it never gets very cold.
What if you did the study in Riyadh or Dubai or Miami or Phoenix where it really gets too hot in the summer to walk around a lot? Similarly what if you did it in Winnipeg or Minneapolis or Fairbanks, where it gets too cold in the winter to walk around outside in comfort?
Weather could end up being a confounding variable for steps in certain areas I think.
I find it hard to believe someone with ME/CFS on, say 1000 steps per day just around thier house, would not at least increase to about 4000 steps if they improve significantly and are able to go out more, even if they are doing more brain work.The problem with steps as a metric is it only partially represents activity. It could be as someone improves they reduce steps as they are more capable of doing mental tasks and focus on some of these. So steps should be useful but we need to consider them in the context of overall energy usage.
I also like the idea of correlating with weather effects etc.
While IgG4 did go down more in responders, that's probably because it was four times higher at baseline in responders than non-responders. So maybe high baseline IgG4, like high NK cells, might be an indicator of who will respond.IgG4 seems to have gone down more, particularly in responders.