Like you, I find the discussion fascinating, especially after 30 years with little happening in research.
But maybe this is the time to raise some methodological concerns. I haven't been able to read the whole paper or all this thread, and I'm likely to be wrong about a lot of this. There are...
Your poetry resonates with me. Yo capture the experience of severe ME with beautiful language striking imagery. Above all, you convey the emotional impact of this life.
I think it’ll be great when these findings are published because they will finally give us a fairly solid reference point. At the moment, it’s not that hard to find study results to support most theories. Thesse reference points will make much of the literature more interpretable.
But until we know that’s the case, I don’t think we should take it on trust. I gather the AUC for the replication cohort wasn’t very impressive here, which doesn’t inspire confidence.
I’m pretty sure the experience of GWAS was that you do need decent sample sizes to get reliable results – not just more results. The early history was getting almost everything wrong. The exceptions are where you are looking for very big differences, like your ankylosing spondylitis example...
I understanding is that the bare minimum for whole genome sequencing is 1000, which I think is bigger than this study. But as with GWAS Bigger is much better. Sequencing is incredible expensive, so I’m pretty sure the largest sample size is for greater power to understand the problem. But I’d...
This gets even more exciting. Like the posts on self-reports, this tries to understand how the cohorts were selected rather than the data itself.
G93.3 in hospital records (1997-203), Cohort 3, C3
Hospital records cover those 'occupying a bed', so inpatients and day patients, but not...
Data defining the cohorts:
2. Self-report of ME/CFS (Cohort 2, C2)
Experience of Pain Questionnaire (optional and online, 2019-2020)
This questionnaire directly asks if respondents have ME/CFS:
Have you ever been told by a doctor that you have had any of the following conditions? There are a...
Data defining the four cohorts of this study.
1. Self-report of chronic fatigue syndrome (defining cohort C1)
This comes from the baseline assessment (and visits 2-4 where made), and it looks like participants were not prompted with a question about CFS.
Participants completed a touchscreen...
Relevant background about the UK Biobank cohort
The UK Biobank was set up as a prospective study of mid- to late-life illnesses. Via the NHS, it invited over 9 million people aged 40 to 69 who lived close to a string of assessment centres to take part. Over 502,000 people were recruited, over...
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...
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