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Just brilliant. An "expert" that believes GWAS don't lead to better diagnostics and treatments.

Is what's causing PEM activity of the brain in excess of what it can tolerate due to some problem at the synapses? Is there any indication that glutaminergic synapses are playing a role in ME/CFS? What's the similarity between autism and ME/CFS?

Fever as recurring symptom of ME/CFS was reported by 18% of patients in one study. The only temperature abnormality I've noticed is feeling of low body temperature on days where I wake up feeling particularly unrefreshed. Also sometimes the inside of my head feels a bit too warm.

Small fibre neuropathy seems like a good analogy.

Interesting because my ACADM enzyme activity is about half that of a normal person due to an unambiguously pathogenic variant on one allele. Allegedly this does not cause significant problems but I was never fully convinced the effect was zero in my case.

I know that in neurological illness there can be accumulation of synaptic proteins. Maybe in ME/CFS the reason we haven't found such an accumulation of proteins yet is because the accumulation is not irreversible, occurs due to exertion and feels awful, and improves with rest, so that patients...

In more general terms, the way I experience PEM and its dynamics gives the impression of it being the result of an imbalance between decumulation and accumulation of something. We could use other words and analogies, it's not important. Roughly: Rest and sleep allow decumulation. Non-demanding...

DecodeME seems to be telling us that the problem is in the brain. Maybe as result ordinary wear & tear in the whole body appears to the brain as extreme so that a disproportionate response occurs in the form of PEM. Maybe the wear and tear is in the brain in certain areas, without leading to...

Maybe it's happening at a limited rate and PEM is effective at keeping the person's activity within sustainable limits. There may be no permanent damage precisely because of PEM. For some reason I can tolerate riding a bike much better than walking. I suspect the reason is that walking is...

The idea is roughly that the brain senses that the maintenance isn't proceeding at the rate that is sustainable with current activity levels and that the only option is to limit further activity and dedicate more time to rest. It achieves this via PEM.

PEM is generally the main cause of disability in ME/CFS and it is typically delayed with respect to the activity that triggered it. It seems possible that PEM is closely related to maintenance and restorative processes that occur in the body. More activity during the day would lead to more...

@ME/CFS Science Blog I want to make sure that I understand what is being proposed. Is the model one where a part of the brain that integrates information on the body's health to understand the overall level of sickness/injury/functional capacity/energy reserves/etc. is receiving distorted...

I'm not convinced that wearables are useful or managing the illness in daily life. A relation between a trigger and symptoms that is important can be discovered through mere observation. Taking notes can make it easier to discover less obvious effects and costs no money. Adding a wearable...

Are there any interesting things you're working on?

Thanks, but I think I need to get away more from the computer.

I believe you because I've been trying for years to find other diseases that resemble ME/CFS and sarcoidosis was one of the diseases with a PEM-like phenomenon. The idea is that this information could be useful for differential diagnosis and for narrowing down the cause of PEM. If all these...

I believe the reason LLMs are useless here is because they repeat the speculations of others with no ability to discern sense from nonsense, and mix in knowledge of how things are connected in the body as well, with little ability to figure out what's actually relevant. If among these...

I liked parts of the article because they explained some of the limitations and psychological dynamics of living with illness. It was too PEM-centric though. Then I got to the part about LP and now I'm wondering whether this is just a made up story. In words similar to the author, the vice of...

I have a bunch of questions, apologies if they don't contribute. Can genetic interferonopathies tell us anything useful? Maybe one exists that resembles ME/CFS. From what I understood, it's a broad category and often associated with tissue damage or other obvious problems, but perhaps there is...

Long-read sequencing is much more interesting for its potential to discover things that short-read sequencing cannot find. There was a suggestion that structural variants affecting neurosteroid metabolism might cause a ME/CFS-like illness. These variants are difficult to discover with commonly...