1. There are serious doubts about accuracy of diagnosis, well rooted out here:
So it's is basically chronic faitgue plus at least 4 out of 8 largely generic CDC/Fukuda symptoms, with no mandatory pem, whose assessment in any case is unclear. And no attempt to diagnose alternative causes of...
DecodeME is looking at HLA. For Technical reasons, it needs to run a different kind of analysis for HLA It’ll be interesting to see if the HLAs flagged by this paper show up when the results finally appear.
I'm sure this happens. I suspect a bigger risk is that people have been told they have chronic fatigue (around 10-fold more common than ME/CFS) and misremember it as or confuse it with CFS, as the paper suggests.
Yes, I find this real blood flow stuff really interesting, does anyone have any usable links? A review is exactly what we need.
I can’t figure out the relevance of low ESR, given that it’s usually seen as super healthy.
I should point out I’m focused on a few good examples for the introduction...
@ME/CFS Skeptic
You seem to have a better handle on this subject than most, given your thread on this from 5 years back, your recent blogs on the CPET, and your forensic approach to biomedical studies in general.
Which findings, if any, would you say a robust (and ideally meaningul as well...
What would you say are the top robust findings about ME/CFS
I'm writing an introduction for a research paper and want to point out how little we know for sure. But as it is an introduction, it has to cover a lot of ground, so I can't go into much detail. I would appreciate references...
I’m pretty sure that in this research they excluded people who said their health was good, on the grounds that they might be right. It’s possible this includes people who misremembered a previous diagnosis of chronic fatigue and are now in good health.
A paper about the quality of this UK...
Yes, amongst those people who make it specialist clinics or are actively involved in social media groups who are not typical. I have no idea about the rest – the major majority. Some of them may have me/CFS, but I would like to see some evidence of this. I suspect most do not.
It’s only established more severe cases and those that found their way to specialist clinics or social media campaign groups. There’s no reason to assume they are typical of the whole, particularly when we know the whole are much milder and can qualify for long Covid with a huge range of...
I can see that, and maybe it’s what’s needed to get a result. But like you, I think it’s high risk, as well as not the right way to go.
The numbers are already pretty big, and I wonder if making them even bigger make the case that much stronger. Especially as a lot of politicians are even...
Yes. We have no data on whether or not these people have the same illness – no evidence at all. What we do know is that long Covid is “defined place great by a couple of hundred symptoms – it’s not based on a limited number of course symptoms. Some definitions of long Covid, which have been used...
We do. The 50% figure comes from biased samples, either specialist clinics or social media groups, who are likely to be more severe. And the massive numbers come when you apply the 50% figure to the ONS data.
It is the ONS data itself that undermines the 50% claim. Because the ONS studied also...
Yes, that frustrates me too, especially when it comes to LC-ME estimates, which don't square with the data.
But this higher estimate of 0.6% (previous best estimate was probably Jason, 1999, 0.42%), largely using pre-LC data, looks good.
I think there is a question mark about UK biobank diagnostic reliability. People were asked either if they had ever had a diagnosis of chronic fatigue syndrome, or Myalgia and celery -itis/ Chronic fatigue syndrome. It’s too easy for people with a diagnosis for chronic fatigue – which is pretty...
Agreed, it’s not a Mendelian disorder.
But each individual hit could point to a biological process that plays a part in the illness. It could be one of several parts. Or it could reflect some of the likely-several different sub groups.
Ideally, you would find several genes that played a...
I’m guessing it wouldn’t make a great deal of sense of people to start pursuing 115 different candidates on the basis of a small study and a potentially over fitted model.
But comparing these results with other studies might be very useful eg the DecodeME GWAS and the precision life work on...
You said this on the 25th of March. Are you still thinking of making your ideas public on that kind of timescale?
And I seem to remember you said you theory would also indicate a potential existing treatment. Does that still look like a possibility?
thanks
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