The problem, in Norway, is that having a patient organization as part of your study increases your chances of getting funding, and with Vogt being a doctor and something about ethics it gives credibility when researchers can point to collaboration with Recovery.
Norway is not the capital of Denmark (sorry, just an old saying that really fit here) ;)
I belive Recovery Norge is also part of another study with Wyller, but I don't remember the name at the moment.
Could you also share the protocol for the CEBA project with the "sustained arousal model"?
It is the "Forskningsprotokoll" found when one clicks on "Relevant sentral informasjon" at this link...
Forgot this quote :)
I'm not sure if the pathophysiology would always be there. I've pulled car tires in the snow every day for weeks a winter two years ago and felt fine, until suddenly I did not recover any more. But for an extended period I did recover and was able to do this without a drop...
We don't recover as we're supposed to, but I'm not sure I would call it constant PEM. More that we have a threshold for activity and if a patient hasn't recovered from previous exertion, they require less activity to reach their threshold. If a patient continuously doesn't recover, eventually...
I think of PEM as a cummulative thing. Or, I think of my ME mostly as a problem with recovering from anything.
It can take days to recover from exertion, and depending on what I'm recovering from and how much energy I spent any extra exertion (like eating) just can't be dealt with properly and...
I haven't taken a CPET, but during my years of illness I've had periods where I've been able to increase my physical activity and increase my fitness (up until a certain point, at which I would get PEM, no matter what I did to increase over this limit it just didn't happen. But in my last long...
The barrier problems could be caused by mucus problems. Some bacteria/viruses/allergens can change the expression and organization of the tight junction proteins that keep the gut epithelium barrier (or skin barrier, or blood brain barrier) together. With a change in the mucus it would be easier...
I am sad and angry to hear of her experience. It's so easy to check. Like @Arnie Pye says there are different types of B12 and it works together with other nutrients. Best to work with someone who know what they are doing so one can reduce the trial and error, and hopefully not end up taking a...
Are you thinking of a functional b12 deficiency? High levels of homocysteine is not specific for b12 but can also be caused by low folate, so when looking for a functional b12 deficiency one looks at methylmalonic acid instead.
I must admit I'm not keeping up to date on mthfr and other...
Fair enough, but when high levels of B12 is found in Norway these things are screened for. I don't think it's all based on this one review, but this is the one I remember being cited at some point.
I'm not sure if you're saying high B12 is rare or not, so:
https://academic.oup.com/qjmed/article/106/6/505/1538806
But with B12 being touted as some wonderful thing for many diseases, it could be so simple that a higher percentage of sick people is taking supplements with B12 in them. Maybe...
I agree there are reasons to be wary, I would still like to know if the patients were supplementing or not, and if there is a difference between high levels due to supplementation and high levels without supplementation.
There has been a study on high b12 and all-cause mortality in Denmark as...
This is also true for other studies where high b12 is linked to cancer or all cause mortality (there are a few).
However, if you have high B12 without using supplementation it is cause for a more thorough check-up. There are many non-pleasant reasons this can occur. And as someone with high b12...
Sometimes makes me limit my water intake as it just causes too much movement for me when I'm in PEM :(
I don't think a sudden change in blood sugar would cause this, what happens in diabetes is that the absorption of glucose from preurine back to blood gets overwhelmed and glucose then ends up...
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