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The comments can be read here http://www.virology.ws/2020/01/13/trial-by-error-the-uks-proposed-genetics-study/

Just wondering how many here have what could be described as paralytic muscle weakness? Does paralytic mean that the person cannot move the respective muscles at all?

I'm happy to see the good news that this consultation went well. I also have some concerns. We don't know how to treat ME/CFS because there hasn't been enough research. We need specialized centers where patients can be referred to. I worry that these centers could end up promoting dubious...

Interesting that it mentions piloerection. I had a lot of inappropriate and long lasting piloerection (often with shivering) a few months after onset of tachycardia that would later be diagnosed as related to POTS. Toghether with suspected small fiber neuropathy. With widespread but superficial...

Did anyone here watch the debate today?

Maybe there are concerns about the reliability of retrospectively applied diagnoses.

Very nice

Psychology may yet be the key to overcome the problems in the area of functional diagnoses. If we can find a way for doctors and patients to be more comfortable with admitting they sometimes they just don't know, that it's better to maybe wait and observe for a while, that drug interactions or...

A FND diagnosis after the initial nonfindings would have prevented or delayed the correct diagnosis.

I'm sorry to hear this. I've had a terrifying worsening due to antibiotics.

It would also be difficult to talk about how the position of the planets causes disease and misfortune. One couldn't discuss a mechanism because there is none. All one could do is insist that it's happening somehow, and point to anecdotes and inevitably flawed correlational data, or run some...

Okay I missed the earlier part about the study using the CureME questionnaires. Which are listed here https://cureme.lshtm.ac.uk/researchers/431-2/ Symptoms experienced Sociodemographic variables Family and individual health histories Potential risk factors (exposures) Medical Outcomes Survey...

I wonder if there has been too much focus on the immune system in ME/CFS. As this article says there could be dysfunctional crosstalk between other kinds of cells and with the focus on immune system, that may be why the cause hasn't been found yet. In particular the dysfunctional crosstalk...

It wouldn't look good to try and prevent access to data on the basis that the requester believes in CBT/GET. What could be done is to minimize the potential for abuse by avoiding collection of data via potentially problematic questionnaires. Avoid problematic questionnaires entirely (the kind...

It seems sensible to prioritize maximization of recruitment rates above all else because that is the main obstacle to overcome. I would have second thoughts participating if there was any indication that the usual CBT/GET careerists could get their hands on the data and as usual, offer bizarre...

The downside to valueing free speech appears to be that you end up with a society where the biggest liars get ahead.

Yet another reason to stay slim.

This paper by Wilshire and Ward is relevant and it has a section on psychogenic nonepileptic seizures: https://www.researchgate.net/publication/283476227_Psychogenic_explanations_of_physical_illness_Time_to_examine_the_evidence The authors also examined how well supported by evidence various...

There is a simpler possibility that doesn't require speculations about patients subconsciously imitating real illness to communicate their emotional distress. That current instruments aren't always sensitive enough to pick up the abnormal electric activity associated with epileptic seizure. It...

I suspect that feeling horrible when waking up might could have something to do with cortisol awakening response not working well. By the time blood is typically drawn, the cortisol levels would however already be fairly normal. I did a diurnal salivary cortisol curve once and the first sample...