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Pompe's disease is glycogen storage disease type II https://en.wikipedia.org/wiki/Glycogen_storage_disease_type_II

The claim is questionable since both of these are retrospective studies. https://pubmed.ncbi.nlm.nih.gov/19188532/ https://pubmed.ncbi.nlm.nih.gov/22408134/ They may simply be measuring the effect of illness severity on the current mood of patients which can influence how past events are rated.

Why not be loved by saying these magical words: we got it wrong with ME and want to make it right now. Let's talk how to make this happen. They won't do this because they're trying to maintain the illusion of being perfect.

By internal inconsistent theories do you mean something like continuing to propose autoimmunity in ME even after the null results from Rituximab trial, without being able to explain how it could still be autoimmunity? Or is it more like the CBT/GET illness model that contradicts itself by...

Is it babble or is there some real insight? If you have to ask the question it's probably babble.

Coming to accept one's disability, and "coming out" as having a controversial illness is psychologically difficult but also important. And I have problems with self esteem due to achieving so little in life. It's unfortunate that psychologists and psychiatrists seem to generally have so little...

Such a psychologically healthy message.

https://www.tandfonline.com/doi/abs/10.1080/21641846.2021.1876613?journalCode=rftg20

What MXD1 does: it seems to suppress the process of making ribosomes (which in turn make proteins). STX3: involved in exocytosis (a way to transport molecules in bulk out of the cell). Also involved in the growth of axons and dendrites of neurons. DYSF: involved in skeletal muscle repair...

CFS patients did an exercise test, with blood samples taken before and on the following 3 days. RNA-seq, followed by differential expression analysis of sorted immune cells showed little difference. That sounds like a failure to replicate PEM. They suggest it may be due to an insufficiently...

This is better than most reviews published on the topic.

If only we could get Monbiot to write an article on the PACE trial and the culture of BPS junk science.

We're not especially in need of "more caution", but taking the initiative with well reasoned arguments because in reality we're in a strong position. The BPS people are reduced to personal anecdotes of benefit, TG just found out things are a little more complicated than "a small vocal minority...

If proteins related to the cytoskeleton, cell-cell communication, extracellular matrix, etc. keep showing maybe it's time to physically look at cells of patients and the spaces inbetween them. My understanding is that different kinds of ephrins in different tissues which would be a clue as to...

I feel like people are being close-minded about the possibility that Garner really did have something that is very close to or the same thing ME/CFS is, if only for a several months. His bizarre interpretation of what led to his recovery is a distraction from the important observation that he...

The lack of criticism I think it has a lot do with fear of reprisal. They're sensitive to criticism and tend to respond aggressively to it. Nothing is allowed to tarnish the image of the competent expert. The irony is that with this close mindedness you can't ever become very competent.

One ancient method of diagnosing diabetes was to test whether ants were drawn to the urine of the patient. In ME/CFS we're still not much further ahead than this it seems. Make patient exercise, if they get worse it's ME/CFS.

I am wondering: how do you go from disruption of these proteins to an illness like ME/CFS? Ephrins play a role in the neuronal dendrites and synapses and that seems like it might be a way. Ephrin regulation of synapse formation, function and plasticity...

It's possible that Garner had real ME and that he recovered from it in a relatively short amount of time. Maybe the prevalent view of ME as being a lifelong problem 95% of the time is not correct. How do you distinguish between a bad case of PVFS and ME anyway? From what I remember Ramsay...

It's true, but just as we should not assume that the ME/CFS-like long covid cases are ME/CFS, we should also not assume that they are distinct. They could be the same illness. The question will need to be clarified with research.