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I got it drawn. There were multiple EBV tests and the Lyme test is DNA so it would only pick up a present infection.

My physician finally ordered more tests, for EBV, CMV, and Lyme Disease. I don't currently have more detailed information on the type of test, sorry. How much is this gonna reveal about what's going on in my body? My expectations are low. Is someone who had Lyme 10 years ago likely to still...

Yeah I'm pretty darn tired of BPS doctors doing this cycle of doing a bad study, claiming victory, trying to convince everyone else, and attracting well-deserved criticism. They will never do a study rigorous enough that if it fails, they will admit failure, and if it succeeds, we will be swayed.

The most important effect of this article will be bringing attention to ME and severe ME, not publicizing a case study. If it mentions that his only option was unproven treatments, it could spark interest in funding research.

Fycompa is an anti-seizure drug. Who knows how his doctor decided to give him that.

Lol what? This isn't a political debate where we have filter bubbles. This is a scientific debate where we weigh facts. You won't move the needle by accusing your opponents of character flaws.

I use fatiguability as well. I know fatiguability and PEM are separate phenomena because I can exert myself, feel tired, rest and recover, then get PEM 12 hours later.

I expect better. Listing your conclusions, then ending it with "it's not really statistically significant" is the scientific equivalent of a clickbait ad saying "If your dog licks its paws every day, do this" that links to an hour-long video that pitches an overpriced supplement 50 minutes in.

The SSD-12 questionnaire is available in this paper. They ask about symptoms like dizziness, insomnia, chest pain, cognitive impairment, fatigue and shortness of breath. People with LC will score ludicrously high on this, and people with pre-existing or secondary mental conditions will rate high...

LC is an umbrella term for any medium- to long-term health effect of Covid. If Covid makes your ME worse, you could call it ME+LC. If you get new, non-ME symptoms after Covid, it's very much comorbid ME and LC.

I have only seen one study that evaluates the risk of long Covid in people with ME: A preprint called "Severe acute infection and chronic pulmonary disease are risk factors for developing post-COVID-19 conditions 2022" (S4Me thread, preprint). They estimate that people with ME/CFS have 4.69x...

I went to a psychologist who diagnosed me with SSD (presumably my thoughts were excessive), or maybe he wanted to help me get disability. I didn't think it was very excessive. At the time I saw him, my health concerns were very reasonable as I had recently discovered ME. I was grieving, trying...

Looks like someone is taking XKCD seriously.

What I understand about this gene, in plain English: Men with ME/CFS were more likely to have variations in the gene PDE10A, which regulates the transmission of certain signals inside cells. There's a lot of it in part of the brain called the corpus striatum, which helps coordinate movement, is...

This is good news in that this could lead to a bigger trial.

I'm imagining the same thing. If Decode recruits enough people to find something but falls short of its goal, there'd be a strong argument in favor of a GWAS drawing from a larger pool (perhaps USA or international).

Yes, generally.

They can't do that because their control group is UK residents. If they accept samples internationally, the control group's no longer a match.

Even if nobody else joins, I'd expect a GWAS of 9k people to still find something. In my non-scientist opinion.

I'm glad they're continuing to get research from the Rituximab cohort despite the drug itself not working.