I'm hoping this is a good place to ask about diagnosis practices in the Netherlands.
Along with Audrey Ryback (a researcher at Edinburgh in Chris Ponting's group) and @chillier, I'm using results from the 2021 EMEA survey to examine data on the age at illness onset for ME/CFS.
One striking...
Copied from the News from The Netherlands thread
I'm hoping this is a good place to ask about diagnosis practices in the Netherlands.
Along with Audrey Ryback (a researcher at Edinburgh in Chris Ponting's group) and @chillier, I'm using results from the 2021 EMEA survey to examine data on the...
I'm assuming the RA/Lupus/omplement example also ties in with your point about making all the details fit.
I don't think they looked at onset time to fatigue, but then I think there is a lot more to be gained from prospective studies if done better. In particular, can we distinguish those that...
@Jonathan Edwards, thanks to you, Jo Cambridge and Jackie Cliff for putting together such a thoughtful model that, at the very least, shows how a serious explanation of ME/CFS should look. Apart from the detail, it seems to go out of its way to acknowlege various factors that don't obviously...
I wonder how relevant neural hypervigilance is.
(If I’ve understood right, that’s the basic idea of the interception hypothesis, which a few years ago seemed to be the most popular way to add the bio to biopsychosocial. Just checking I have that right – it’s not an objection in itself.)
But it...
That’s pretty depressing, if unsurprising. Thank you for putting your head above the parapet when you know what is flying your way.
I don’t know if such trenchant opposition reinforces your view of the importance of this, or it is just part of the package?
@ME/CFS Skeptic thanks for the...
which is itself a very helpful step. Up till now, it’s mostly consisted of “ Here is our finding. Here is how it could explain an aspect of the illness. Job done.”
Are you saying that there is a clear prodrome and then an event that leads to full blown? ME/CFS? I thought some people argued that...
C2: Self-report of ME/CFS from the pain questionnaire, 2,720 people.
I'm starting with this cohort as it's the most extreme and also has data that can be useful for qualifying matched cases from other cohorts.
The best thing about this cohort it asks people if they have ever been told by a...
Some comments on the validity of each cohort, adding to what the authors say and what has been posted here to date.
General point
The cohort prevalence rates (all diagnosed cases) are mostly pretty high, runningging from 0.31% for G93.3 hospital admission recorded cases to 1.63% for those...
The paper Says that answering these three questions “yes, no, no” is consistent with PEM– Aren’t you agreeing?
I agree that those questions aren’t very helpful in identifying PEM, But are relevant to ME/CFS, And could be useful in assessing the status of those in other cohorts who also answered...
Cohort quality assessed by cohort overlap
Those in C3 (hospital G93.3 code) come out best, C2 (PQ ME/CFS) worst
The simplest way the study assesses cohort quality is by how much is a diagnosis in one cohort supported by diagnosis in another data field (i.e. in another cohort). I've graphed this...
Thanks – and I just didn’t want you to think that I hadn’t even bothered to read the abstract (where the acronyms are spelt out) before asking a question!
Thanks very much for that. I was also struck by the clean separation for biological variables – like you say, that’s pretty rare. Unless there’s a selection criteria effect.
I’m still struggling little to understand the biological big picture and how important this is in the illness. But a link...
Look neat analysis
For the benefit of those of us not keeping up with this work, would you be able to explain what we are seeing here that is important, preferably spelling out the acronyms for CBF and CO, which muddle my brain?
I am interested in CBF and the CO work, and these findings look...
Where is missing data missing from, and why?
Summary: All UKB participants have baseline assessment data (with self-reported serious illnesses), and almost all have hospital records (with diagnosis codes). Nearly half have GP records (with diagnosis codes), and a third completed the Pain...
Sorry, I haven’t been keeping up. Interesting analysis But 28% of that group reported good or excellent health, and they were other issues –, Though I don’t think it’s so bad a cohort because it’s not simply “self-reported“. People People were asked if they had a serious illness or disability...
Thanks for the responses, @forestglip and @jnmaciuch.
My concern about AUC wasn't anything to do with diagnosis (it's too low to be useful), but as a way to demonstrate the biological validity of the findings. The authors say:
My italics above.
In this case, they are stressing the...
Could you just spell that out, please.
My first quote is from the para, which begins with a discussion of simulations and concludes with the data on and "independent dataset" you quote. The next part begins, "To evaluate the performance of Heal2 on real ME/CFS data..." Are you saying the...
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