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This is true for the most part, but there are also some mutations that will cause disease.

I've seen this argument so many times I want to scream. Lately I have been thinking how differently we handle bad quality research based on what it is about. Take masks, the argument that they don't work in the real world because people don't use them right is common. With nutrition we continue...

I don't always get it with PEM, but have been the last few times I've overexerted. It's also followed by my skin burning (strongest in the muscles I've used most, but my skin is hot to touch all over). As a kid I would get burning skin so that I could not have my hand on my arm because it hurt...

Coenzyme ;) I'm not a fan of comparing whole classes of compounds between groups (the metabolic cluster figure @Hutan shared) as it might be specific compounds within the groups that are important and differences between whole classes of lipids etc could be due to something so simple as...

I can feel terrible both with and without sound sensitivity, so for me the sound sensitivity is not dependent on already being in a bad state. I also had sound sensitivty as part of my migraines growing up, and then it was usually a warning I was going to get a migraine attack. It is a piercing...

There are some other threads on the forum related to the Bragée ME-center in Stockholm: Two seminars hosted by them: Sweden: Webinar: Gunnar Olsson on ACT for ME, hosted by Bragée ME Center Sweden: Webinar 'Half-time control' Bragee December 2020 A paper on Intracranial Hypertension...

A post on David Oliver withdrawing from the RCP presidency has been moved to the thread: Statement from the RCP and Professor David Oliver, 18 July 2022

Yeah, the potential for harm is huge.

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...