Search results

It's a very interesting piece. "Yet here’s the kicker: hopelessness is a privilege. If my condition was just a bit more severe, my life would be miserable. If I wasn’t married and didn’t have a supportive family, I would be in penury. If I hadn’t chosen a career path that has some flexibility...

Hi I thinking about seeing an ME/CFS consultant privately these two names came up. Has anyone tried them and if so, can they tell me anything about them? Or any other suggestions (and why?) I can't travel so would need to be by video. Thanks.

My blog on the HLA research: https://mecfsresearchreview.me/2020/04/23/the-best-evidence-yet-that-immune-system-problems-can-cause-me-cfs/ (sorry, don't have the capacity to follow this thread properly but post in case this is relevant.)

Thanks for all your comments and analysis. Compared with prevalence studies, DecodeME requires PEM, as you say, and also requires all participants to have a diagnosis of ME or CFS from a healthcare professional. Clinically diagnosing each case ourselves would have been ideal but would also...

Devereux-Cooke et al., 2022 :)

I think so - if there is a pathway that gets out of balance in ME (the hypothesis), you would expect to see sDNA differences in genes involved in the pathway or in its regulation. From my dodgy memory banks, a quick summary of the NMR vs metabolomics approaches Like all 'omics, metabolomics is...

Very good to hear there are more studies in the pipeline. Am I right in thinking that other metabolomics studies (Lipkin, Hansen, maybe Unutmaz, Naviaux) didn't find increased use of glutamine/ate? Though I note this:

No it is shipped My poor phrasing: I simply meant that the original claim that we rely more on amino acids is not robust and hasn't been independently replicated (and there have been many metabolomics studies).

thanks for the clarification on the genetic stuff. But my concern is more fundamental than that. Such hypothesis work is inevitably speculative. By building on sand, the whole process looks like a waste of time to me. The hypothesis is based on the idea that we burn more amino acids for energy...

Where is the evidence that we are reliant on amino acids for energy? I wasn't aware that was a solid finding. Again, we have no good evidence (yet) of any genetic differences in ME/CFS. I'm worried about pursuing hypotheses based on shaky foundations. Let's get the core science right first...

70 people a week = 3500 people a year registering. Good to see this project is gaining scale. It also shows the scale of what Decode ME is attempting: we want to recruit 25,000 people in short order. We have plans and a big community of people who are enthusiastic about this. But we’re going...

Yet another published poem from Veronica, this time connecting themes of chronic illness and war with her Ukrainian heritage. I think the imagery of the fiery sentinels that vanish is so powerful. It's worth reading the full poem at Star 82 Review...

The study only has 22 patients and researchers had to combine several different factors to create a "biomarker" with reasonable results. It seems likely that they searched through many more features to get this result. Above all, there was no replication. We need researchers to raise their game...

OK, they found nothing and went rummaging through the data looking for an interesting finding: So by selecting two antigens in combination with age and gender they found not very impressive sensitivity and specificity. No doubt they explored many different combinations of antigens and patient...

Lupus analogy is helpful in understanding the value SNP findings in GWAS This analogy from Jonathan Edwards, about how a deficiency of one protein in the complement system revealed the importance of the complement system as a whole in causing Lupus, is very helpful in understanding how GWAS...

From the commentary: what is known about TPPP? Hajdarevic et al. (2022) highlighted this gene’s high expression in brain, in particular in oligodendrocytes. This gene is also expressed more widely, including in ciliated lung and adipose cells, and only non-neurological diseases have...

Thanks Trish. I'm not sure what happened there but I have now updated the links in my post.

This is a commentary on the recent GWAS paper (thread) by Dr Rias Hadjerivic and colleagues (including FLuge & Mella). As it is a commentary, there is no abstract, but you can read the full text free until Aug 5 (preprint here). I have also written a 600-word blog to summarise and explain our...

I don't know about Lupus, but my understanding of MS is that the main link is with EBV, not mono. The latest evidence seems to be that EBV infection is a necessary initial step for MS, but that the disease develops sometime later. As opposed to the case with ME/CFS where the infection starts a...

One long-term illness or two after mono? I had thought it unlikely that there were two different illnesses triggered by mon: MEcfs and something else that looks a lot like it. @Jonathan Edwards thinks that's probably what's happening. It's an interesting idea and would be easier to explore if...