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* The S-ME/CFS group is not selected on severity — but does it have any useful meaning? * S-ME/CFS is not a selection of the most severe patients (it could have been) S-ME/CFS defines individuals who meet more than one case definition. In practice, this means excluding ME/CFS patients who only...

Gene array approaches are generally seen as suspect. Take a small number of patients and controls, scan a huge number of genes and look for differences. I would be surprised if it replicates. Single-cell RNA sequencing (scRNA-seq) is a more recent approach that is seen as more reliable for a...

I've got mixed feelings about this study (I've only read the abstract and the comments here, especially from Hutan). Strengths 1. It's a prospective study. The great thing about this study is that it collected Baseline data before people developed glandular fever, and then recovered or...

Pre-Illness Data reveals Differences in Multiple Metabolites and Metabolic Pathways in Those Who Do and Do Not Recover from Infectious mononucleosis https://pubs.rsc.org/en/Content/ArticleLanding/2022/MO/D2MO00124A Leonard Jason, Karl Conroy, Jacob Furst, Karthik Vasan and Ben Katz...

That’s a good letter and a helpful one too. I think Stephen Holgate created the CMRC with the best intentions, but, for a while , he didn’t always listen to the wisest voices. He refers to a transformation in 2018. That was when Esther Crawley stepped down as deputy chair and was replaced by...

Sounds like they found them, but what are they? I would love to know. I'm not sure it's healthy for the research field to have to wait a long time to hear what they discovered.

A very respectable sample. What I think is new (in a large survey) is the data on the scale of impact on family members: 18/32 (0-32 scale, 32 is worst). There is a moderate-to-strong correlation between the severity of illness and the impact on the family member (0.35 with VAS severity, 0.41...

On that £50k salary: Yes, and the aims and ambition are high. We desperately need much greater ambition for ME/CFS reserarch from our charities. Although this is a job in a charity, AfME need to recruit from outside the sector - someone with serious research experience. £50k hardly seems...

This is a big job and, to my mind, shows that AfME is serious about its new Breakthrough-ME research strategy "that will provide the scientific knowledge required to deliver the diagnostics, treatments and eventually kills that we so desperately need." Partnering with Chris Ponting, the...

A well-done study In a nutshell: This large, well-done study cleared much of the smoke around what we can learn from a single maximal exercise test. It showed that many previous 'findings' disappeared when researchers only compared patients and controls with similar fitness levels. The effects...

Costs have been falling rapidly and it's only in the last few years that a study of this size would have been affordable, even if the whole community came together. Most people probably remember that there was a proposal by Esther Crawely a few years ago. That was the right time, but it wasn't...

Ah, now that would be the late Robert Maxwell's great contribution with his Pergamon Press if I have it right.

I haven’t seen a better explanation of why we are doing what we’re doing with DecodeME. Thanks.

The methods are fairly standard and combining results from several big DNA studies is routine (and papers doing this pay attention to any differences when drawing conclusions). The biggest variable is the "genotyping chip", the device used to identify DNA differences at around 1 million...

The latest I have heard is that results (not final, published results) might be seen before 2024. The whole point of these big DNA studies IS to find out what is happening in our bodies. Take a look at the latest DecodeME blog which gives a couple of examples and makes the key point that genetic...

They used the PHQ-9, which was developed for screening healthy populations but which awards points for core ME/CFS & long covid symptoms including sleep problems, fatigue and problems concentrating. The PHQ-9 is inappropriate for measuring depression in this population - the authors might well...

I hope the Mods won't mind me creating a thread for this blog, which looks at why genetic studies are so important. Posted for British Science Week. Decades on, and with over $100m spent on research (it should have been much more), we still don't know for sure any causes of ME/CFS. Genetic...

N is too small to draw any conclusions. But I agree, the approach is very interesting (and could also be applied to other biomolecules). I haven't read this paper but I have been extremely impressed by the methodological rigour in earlier Warren Tate studies. What we need now is a much bigger...

This is my analysis on PR from 2016 of the Pendergrast/Jason study and others, including looking at biases https://forums.phoenixrising.me/threads/jason-et-al-housebound-versus-nonhousebound-patients-with-me-cfs.44330/post-724544 Short version: The study provides support for a 25% rate of...

Three more remarkable poems from Veronica. Her best yet, in my view. Bulwark: To Jane Eyre On being housebound: ...far from That turquoise line of beckoning, where sky And earth embrace. I’m scared the arctic tern Caged in my ribs will break its wings over A view it cannot see, while walls...