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To give an example, it allows you to filter on symptoms such as post-exertional malaise. It would be quite useful to quickly get an overview of studies that focus on PEM as its main topic. Unfortunately, this website probably uses mentions of 'post-exertional malaise' in the abstract. This...

The website looks impressive but it seems like it's mostly AI summaries and AI evidence ratings of ME/CFS studies. That can give impressive looking overviews and graphs but if nobody is doing the hard work of checking and evaluating results, then its quite the opposite of useful.

Looks like there was no control group. I also thought they already published similar data in this paper: Cerebrospinal fluid immune phenotyping reveals distinct immunotypes of myalgic encephalomyelitis/chronic fatigue syndrome - PubMed

Looks like fluvoxamine is a serotonin reuptake Inhibitor but that it's a bit different than other antidepressants because of its high affinity for sigma-1 receptors. Would be interesting to compare fluvoxamine to another SSRI and a placebo to see if it beats both.

Yes or a check to see if dropouts differed in their baseline measurements. They don't give much info on them. They did try to check for this possibility by looking at an interaction between fatigue improvement and baseline anxiety/depression measured with the EQ-5D-5L. They found no significant...

This reserach group of John Imboden at John Hopkins had published a similar study on patients with chronic (> 2 years) symptoms following brucellosis. Here the psychological measurements were taken after the patients were already ill and the sample size was even smaller (n = 8). It included a...

Here's my own summary: in 1957 600 people filled in two questionnaires: the Minnesota Multiphasic Personality Inventory (MMPI) and the Cornell Medical Index Health Questionnaire (CMI). Asian influenza broke out and 27 out of 600 people got ill. They divided those 27 in a group of 14 that...

An old study that is frequently cited in the psychosomatic literature on ME/CFS. Suspect it influenced a lot of people. It concluded that personality and emotional factors influence recovery from Asian flu in the 1950s. Convalescence from influenza. A study of the psychological and clinical...

The paper writes: So the conclusion seems to be that prior-day symptoms are useful predictors but that biometric features add almost no additional information to that.

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...