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In that case, IGHV3-30 usage didn't seem to make a difference to the severity of the leukaemia disease, but some other IGHV3s did, one being associated with worse outcomes and one with better outcomes.

@Sasha, we did put out informal feelers to Sonya about a closer association with AfME and/or WMEA, and we got the message that AfME is not interested. They seem happy that we are doing our thing, they aren't opposed to us. My impression of what was reported back was that they just don't see a...

A long shot, but I wonder if higher levels of IGHV3-30 could actually be protective for people with ME/CFS? That is, the tendency to select IGHV3-30 might help reduce the ME/CFS problem somehow, and so people currently without that tendency have worse ME/CFS. It certainly will be interesting...

I do think it is well-meant, but they certainly have not looked critically at the papers they cite. I expect they were required to do a literature review first, as is common in a PhD. So, I understand why they did what they did. But maybe it is time that things were done differently...

Nice analysis @Arvo That Knudsen paper rang bells. We actually have quite an extensive analysis of it here: Comparison of chronic fatigue syndrome/myalgic encephalopathy with other disorders: an observational study by Knudsen et al. 2012 Needless to say, we did not find it produced evidence...

The paper seems to get more assured and more useful as it goes on, as it gets into the actual tools and how they have been applied rather than talking about ME/CFS. I feel as though I'm getting to the good bits, but sadly am running out of steam to finish reading it right now. I agree with...

From the discussion: They suggest others have found evidence of what they describe as neuroinflammation (glial activation) They tried hard to think of explanations for the finding that more TSPO was related to better cognitive performance in the PASC group, suggesting that the glial...

Here's Figure 2. Top two rows are the PASC group; bottom two are the controls. Red indicates more radioactive ligand binding to the TSPO. As I said, there look to be real differences that differentiate the two groups but I've only skimmed the paper quickly and haven't understood all of it. I...

Although the abstract says 14, there were only 10 PASC participants. Edit: I think there is an error in the abstract. Table 1 suggests that there were 10 PASC participants and 14 controls. They then note that they weren't able to place an arterial line in 2 of the 10 people, so they only got...

So, a radioactive molecule that binds with TSPO, which is a marker of macrophage and microglia activation. The scanning then allowed 3D modelling of where in the brain the radioactive molecule showed up. The researchers also took samples of arterial blood to measure the uptake of the...

Could be worth checking out those STROBE guidelines some time. N-PASC cohort: Non-hospitalised Covid-19 infection; lasting neurological symptoms including brain fog for at least 6 months and still present at teh time of scanning. Controls: people from the same monitoring program, prior to the...

The next stage of the project is discussed here: Request for Steering Group members to guide a study on online connections of people with ME/CFS and their offline lives

Given the title of the study is 'how people with ME/CFS use the internet', the conclusion, while sympathetic, seems way too narrow. The internet is not just a source of social support. As @Wonko noted on a related thread, we order food and other things we need. Much like other people use the...

And this seems to be the next stage of the study: Request for Steering Group members to guide a study on online connections of people with ME/CFS and their offline lives

This seems to be the resulting paper (published before the protocol): A systematic scoping review of how people with ME/CFS use the internet, 2023, Shortland

We've created a new symptom discussion thread and have moved the costochondritis discussion there. Costochondritis and rib pain

This section seems to me to be a useful introduction to the topic Table 1 is a list of recent ME/CFS studies classifying big data. It is noticeable how small most of the samples are. The importance of validating the findings is stressed, by holding back a portion of the data for the...

This section has some nice content. I would have liked to see some discussion here about issues specific to ME/CFS that might affect the quality of analysis, as these things are questions we often have about studies and would be useful for new researchers coming into the field. So, perhaps...

A number of us have recognised that it is hard on students to be subjected to public criticism and have tried with this team and others to establish ways for informed patients to provide private feedback before a paper is published. I personally spend time providing private feedback on studies...

There are two different things - the assumed trigger and the collection of symptoms. People can meet ME/CFS criteria after a range of triggers, e.g. post-Q fever ME/CFS; post-EBV ME/CFS; post-SARS-1 ME/CFS; Post-COVID-19 ME/CFS. It's often useful to note the trigger, but ME/CFS is the syndrome...