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True. But it might be difficult to tell NAV (welfare) that you haven't improved when improvement according to the LP is dependent on your motivation. Then the participants are telling NAV they are not motivated to get better > end of disability benefits (which of course also happens if they get...

The story behind this is that the LP practicioners organization in Norway got someone at the Minsitry of Health to declare that LP was not "alternative medicine". After this the LP organisation then went to our public body in charge of research on alternative therapies (NAFKAM) and asked them to...

I know, but if we took them on their word that they believe the symptoms are real and disturb daily living they should have included something like this in one of their many, many pilot studies.

I don't understand how we are where we are without any good measurements on anything ME :( Am reading about disability and functionality scores now, used to track the elderly population, and am thinking there is much that could be translated into ME research. Why hasn't this been done already...

I didn't To be pedantic, with tick bites it is actually an allergy that develops against a glycoprotein found in many mammals (but not humans and some other apes) :p For some it gets really bad while for others it is only mildly irritating. It is also an allergy that can disappear over time...

One week is not nearly enough to compare omega-3 levels to someone who has been supplementing regularly, blood levels can increase for weeks after starting supplementation. I would have given them supplementation at least a month, and might even have increased the dose to 3 g/day not a bit under...

The finding that celiac can present without GI symptoms has been in people in general, not in pwME specifically. Which also seems to be noted in the paper they are refering to here. Maybe I'm reading it wrong but they seem to imply that the finding has been for pwME.

@Hutan and other aussie members: it is mentioned in this video that a number of pwME in Australia report an intolerance to meat. Meat allergy is a vector induced allergy, which can be spread by certain tick species. You wouldn't know if this is something that occur in Australia and could perhaps...

More like this please :) Though important to remember one can have diet related problems without presenting with GI symptoms.

I haven't seen this functionality on facebook, but it might be there even if I don't know about it.

There is a clip of Kielland's part on the Tjenesten og MEg facebook page, but it is uploaded to fb not youtube.

Even if it isn't about access to energy something like a CPET with measurements before and at a few timepoints after could be a good start. Though in my own illness I don't have to feel terrible to be without enough energy to walk across the living room. My body just won't work ;) At times this...

I was looking for something else and came across this. I've only read the abstract, but will look at it more later as two different states of flux through beta-oxidation seems interesting, especially in light of other hypotheses on metabolic traps the body can get stuck in. Obviously from a...

Abstract In this study we demonstrated through analytic considerations and numerical studies that the mitochondrial fatty-acid β-oxidation can exhibit bistable-hysteresis behavior. In an experimentally validated computational model we identified a specific region in the parameter space in which...

But it has to be done at the correct time. The example used in my system's modelling class was medium chain fatty acid dehydrogenase deficiency, where the patients had to be fasting for the peculiarities to show up in the blood. If the patients had presented well fed the concentration of the...

You would not necessarily get something odd, or anything that can be discussed besides "there are many metabolites we can't identify or quantify". When data is shared it might be possible for others to help identify/make sense of the peaks, but it is simply not always possible (and data sharing...

Agreed.

I want to point out they have been rebutted several times ;) But misinformation stays around, for example Wyller did not get funding for an LP study some years ago, and his boss wrote an opinion piece about how the funding body was biased. The funding body in question (Forskningsrådet) wrote a...

While many molecules have easily identifiable signatures/peaks this is not true for all, and even for those that have these easily identifiable peaks noise in the data can make it difficult. Look at untargeted metabolomics studies and there will e a number of unknown metabolites. For targetted...

This was brought up in the complaints to REK/NEM. Some of the replies Forsmo gave made me unsure if she had read the complaints at all, Kielland told her she was wrong on more than one account (we have data of people worsening from LP, patients have been pressured by NAV to undergo treatment...