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It's not that I have a vehement hatred. I think it's fine to ask people about their quality of life in a survey, or about a whole lot of other subjectively reported parameters, like pain. But, we know about those approaches, and we know that those approaches are subject to biases. I agree...

Interesting, thanks SNT. I think intermittent hypoxia is a significant part of the illness I have. The numbness in my arms that comes when driving or hanging out washing, or the frequency of waking with a completely numb limb is not normal. The postural orthostatic tachycardia, the pulse...

There are a whole range of wearables, some of which are relatively inexpensive. And there are a range of measures, among which measures of orthostatic intolerance and activity levels do relate to illness experience. But we were discussing that it is better to investigate objective measures...

Some issues with the controls in this study: The methods section says that the four cancer patients in the controls were disease positive controls: The results section says that the results from the cancer patients were excluded from the analysis. Table 1 lists 34 controls, 4 of whom have...

A couple of typos, some odd phrasing and missing references. This version looks a bit like a preprint. There's quite a lot of overlap in the BH4 levels, although a substantial subgroup of the people with ME/CFS do seem to have higher levels of BH4 in serum. The assay was double blinded...

I was interested to see that Gillian Leng, previously the leader of NICE and under whose watch the 2021 ME/CFS Guideline was written, is a member of the Cochrane Governing Board.

A discussion of the evidence from cerebrospinal fluid proteomic studies has been moved to Cerebrospinal fluid (CSF) proteomics

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and fibromyalgia are indistinguishable by their cerebrospinal fluid proteomes 2022, Schutzer et al There was this recent paper, also from the Bergquist team. Forum members were generally underwhelmed, mainly due to the lack of a healthy control...

I was about to rant about this, about how 0.97 is virtually the same as 1, but I note that the unit used is a point on the SF-36-PFS scale. So, for example, for every point higher in the SF-36 -PFS at baseline, there was a 3% reduction in the odds of achieving a clinically important difference...

Mean days of school attendance: Baseline 2.1 (presumably days/week); 6 months 2.1; 12 months 2.6 Yes, between the dropouts and natural improvers, these results are nothing. Number receiving home tuition: Baseline 13%; 6 months 24%; 12 months 24% Possibly a good outcome in terms of care for the...

Thank you Lars! In case the tweet disappears later, the PC1 x axis accounts for 31.5%. I look forward to hearing more about this.

We do need massive new efforts. But part of that is lone patients telling people they know about the illness. It will get us somewhere. If people with ME/CFS stop feeling embarrassed, and are as open about our disease as people with other awful diseases, that will make a difference.

Thanks @ahimsa, that looks pretty interesting. Are you able to see the percentage on the X axis label?

Bautista says he is from CFS Recovery. Niklas Malmquist quotes CFS Recovery: (from @mango's link) I don't know if Bautista alone is CFS Recovery, or if CFS Recovery is a bigger organisation.

It's really amateurish BPS. He chose a distracting background with people walking past, so each stop and start when he fluffs his lines are super obvious. You aren't having a crash, you are having 'an adjustment period'. Never mind that you aren't seeing progress in objective measures of...

I meant to listen to this, but the call was in the middle of my night and I didn't make it. Did anyone listen to the call who can give their overall impression? I can't access Twitter - those tweets linked above don't really say anything, summarising here in case they disappear: "Gudrun Lange...

Oh Trudie, to have been thinking about these things for so long, and yet still not getting the difference between correlation and causation. (cross post with Hoopoe)

I don't know, all I know is that the balance is more difficult than I realised when taking doxycycline for weeks on end to protect against malaria. I guess it's likely though that there is no free lunch. Ideally, we would be fairly certain that there is a bacterial infection likely to be...

Further on the negative impact of antibiotics, this paper is specifically on reducing mitochondrial function: Mitochondria as target to inhibit proliferation and induce apoptosis of cancer cells: the effects of doxycycline and gemcitabine, 2020, Dijk et al

I found this paper interesting because it found that doxycycline was knocking down the mitochondrial-encoded proteins, as other related antibiotics had been found to do. Specifically, some of the proteins that are part of the electron transport chain are decreased: My understanding of...