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My impression is that what is being proposed is a kind of immune defect resulting from insufficient integration of fibronectin into immune complexes (complement?). I don't think he is saying that higher circulating fibronectin is causing problems. I still don't have a good understanding of his...

Ouch, Brutal. :laugh:

I'm trying to catch up with Prusty's ideas at the moment and it's hard to follow and understand. It will be easier once the paper is published. A key idea seems to be that fibronectin is not being integrated into immune complexes (complement?), and that natural IgM is low. @Jonathan Edwards do...

For example one of variants I have, one where loss of protein function on that allele is nearly certain according to prediction tools, has to do with cell motility, and in particular phagocytosis (the removal of debris, dead or infected cells). Prusty believes inefficient clearing of cell...

Ron Davis believes that 25% of ME patients have multiple sclerosis.

This is the kind of study that could be useful in ME/CFS. In my own genome I've found about 50-100 of monoallelic mutations that are predicted to be severe enough to affect the protein. Most of these are probably being tolerated but they could act as risk factors under specific conditions and I...

And nobody was surprised.

Patients generally don't believe that psychotherapy can cure ME/CFS (or that psychological factors cause the illness). That's not dualistic thinking. That's just disagreement about the role of psychotherapy and psychological factors in the illness.

Maybe because poor population mental health is not caused by a lack of access to psychotherapies?

Are they collecting data on who has PEM? If not, they cannot draw conclusions on ME/CFS as defined by the IOM. We've seen a number of studies that drew conclusions about IOM ME/CFS without having any real data on PEM in the participants.

Yes, but is it normal for them to deflate tso much that the skin protrudes inward? If it's not normal, what does it tell me about my illness?

I was sitting with my feet elevated high up and noticed that all the veins on my feet, which are usually protruding outward markedly when standing, were deflated so much that the skin was instead protruding inward along the veins. I've never seen anything like this before. Does it suggest an...

Reading that makes me think the founder of the institute doesn't spend time with his patients without a security escort.

I have developed a muscle specific fatigue. It feels like some muscles in the thigh are weak, and when exercised begin sending fatigue and "injured and sensitive" signals. The key is that I can feel it locally in the muscles but also as generalized fatigue and malaise that has no specific...

I think people can't recognize problematic practices like relying on self-reported outcomes in CBT studies that set out of modify how participants view these outcomes. They believe they're doing good science and are met with refusal not because there are serious problems with the science but...

Would it be useful for patients to try and identify particular activities or situations that cause a change from feeling okay to abnormally fatigued? I think it's often assumed that ME/CFS patients are tired all the time. I find that throughout the day I can easily switch back and forth between...

I find that my illness fluctuates over time. The illness severity determines whether events are stressful or managable, activities are exhausting or enjoyable, and how I feel in general, and how well I'm able to organize things in my life. So it's to be expected that generally more positive...

If I remember right atypical ME in the context of the Canadian criteria means no infectious onset.

I think German advocacy succeeded because they were able to reach people in parliament with successful protests, after a very successful petition that had the support from wider society and not just patients and family. A few engaged German doctors is maybe also what made all it possible.

The mechanism behind the belief in psychosomatic illness appears to be that uncontrolled severe illness causes feelings of hopelessness and despair. This makes the belief that there is a very simple thing that can be done to cure or control the illness so attractive. An industry has grown to...