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Thanks, here's the graph:

It might be a good idea to check the distribution of age of onset in people with post-COVID ME/CFS only. Unfortunately, there have never been any good epidemiological studies on this. Even the RECOVER one was disappointing.

Someone asked if the first peak could simply be a consequence of infectious mononucelosis/EBV hitting people in their teens.

I think the study already did that and the Netherlands was sort of an outlier because it had a large early peak and weaker or almost no second peak. I mainly added that second survey to show it had the same pattern.

Noticed that fellow ME/CFS patient from Italy Paolo Maccallini also did an analysis of the EMEA survey. GitHub - paolomaccallini-hub/SurveyME: Reanalysis of the EMEA Pan-European ME Patient Survey by Machine Learning, Bimodal Analysis, and Local Outlier Factor · GitHub Regarding bimodal age of...

Agree with your points. Here they just asked all participants of the survey their age at onset of ME/CFS. That could have skewed findings towards younger onset but if I understand correctly this method is similar to the EMEA study. So it wouldn't explain why other countries show two peaks and...

Regarding the Netherlands, there was an additional survey published in March 2024. It was organised by the patiëntenfederatie for the creation of a new ME/CFS guideline (that is still underway). It asked about age of onset and had 1527 respondents. It confirmed a much larger peak in adolescence...

Have no plans in that direction myself but always happy to help if there are researchers who plan to write a review or paper along the same lines. But in that case, dampening that normal immune response with for example anakinra or IL-6 inhibitors should actually help to reduce symptoms?

Thanks for all the comments and feedback. The big cytokine studies also tested a (small) selection of chemokines (CXCL1 CXCL5 CXCL9 CXCL10, CCL2, etc.) Done, thanks. It does trouble me that I might have shattered people's hope, certainly not my intention. I used to write more about the...

Looks impressive, thanks so much to the team who did this analysis especially @Simon M If i understand correctly you tried to apply a unimodal distribution to the age of onset data from 10 different survey countries + DecodeME and it often didn't fit (using the Hartigan's Dip Test). 3 means...

We've made this social media summary of the article but for if you want to engage with the content or find references to the studies, it's best to look at the full article. 1) New article: we've made a comprehensive overview of the immune system in ME/CFS, analyzing major studies of the past...

Link to the article: https://mecfsscience.org/immune-findings-in-me-cfs/

This could align with the Dutch autopsy reports. Correa da Silva described the findings as follows: "So in the patients that donate their brains, possibly endstage patients, we do not see signs of classical neuro-inflammation, but we see dystrophic, rather senescent microglia .... ME/CFS has...

I think this would show as less fibre fraction (NII-FF) while this measure was increased in ME/CFS. More water in axons or less water outside it seem like the two most plausible explanations but not sure what this might mean in terms of pathology.

There are two lines of dicussions. One is about the statistics. We find it weird that there were more significant findings when confounders like age, sex, depression, anxiety were added to the model. It's possible that this happens but usually adding confounders like this will result in less...

I'm not that good at math but I think the very free water (with diffusion > 2.5 μm2/ms) doesn't even enter their equation. The second part represents the isotropic components, an integral from a to b where "a and b are the low and high diffusivity limits for the isotropic diffusion spectrum...

My guess is that signs of edema would show up as an increase in the isotropic hindered fraction (0.3.<D≤2.5μm2/ms). But in ME/CFS this was decreased instead of increased. As Hutan explained, the same goes for the isometric restricted fraction (D≤0.3μm2/ms). This is water that could go any...

To add to the confusion the obesity paper defined the 'DBSI-hindered fraction' as > 0.3 µm2/ms; Source: Neuroinflammation and White Matter Alterations in Obesity Assessed by Diffusion Basis Spectrum Imaging - PubMed So as @ScoutB already highlighted, why does the current ME/CFS paper put the...

Still confused about what the hindered fraction means and how it relates to edema. Some papers describe it as follows: Source: "A new imaging modality to non-invasively assess multiple sclerosis pathology" - PubMed The current ME/CFS paper defines it as: But other papers described a similar...

Suspect they did this to rule out that comorbid anxiety or depression were driving the effect. Bit of a longshot but perhaps the increase of significant results after controlling for potential confounders was due to anxiety/depression having an opposite effect to ME/CFS? Or (also speculative)...