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Markku Partinen was an author of this ME/CFS paper: https://www.s4me.info/threads/a-qualitative-longitudinal-study-of-a-health-psychological-group-intervention-for-patients-with-me-cfs-2023-keurulainen-et-al.34562/#post-487155

This sounds like what @Jonathan Edwards has been saying. Are you involved in this?

Hoping that they make the data public so that others can analyze it. Is this all that they report: not even an effect size or table of the main findings?

Because of the selection criteria, the patient groups already had orthostatic tachycardia or reduced cerebral perfusion. So I suppose the main finding is that these patient groups have only relatively mild autonomic dysfunction in other domains. The discussion also includes some speculation...

In comparison here's a 2019 study that used G93.3 codes from the US Optum database which I think looks less reliable than the Norwegian data. https://pubmed.ncbi.nlm.nih.gov/30671425/ Prevalence of ME (G93.3) was 120 (actual data) - 870 (extrapolated) per 100.000. Female predominance of 60%...

It all depends however on how reliable those databases are. - First there is the question of whether the diagnostic code G93.3 really reflects ME/CFS. In past database-studies of this kind we have seen abnormally high prevalence rates that increase in older age groups. Table 4 suggests that...

Looks very interesting. Impressed by the work of Kielland so far. Some take-away points: - At the time of diagnosis most of the decline in income (and increase in sick leave benefits and transfers) already occurred. If you look at those years before diagnosis, the effect looks really strong...

Indeed, quite sad. I wonder if it's mainly the name 'chronic fatigue syndrome' that has made questionnaire research like this unreliable and if it's the respondents themselves who are confusing chronic fatigue with CFS or doctors.

The EMEA survey said that the average age of respondents was 50 years with the following distribution: https://europeanmealliance.org/emea-pan-european-survey-uk.shtml These look slightly younger but the age peak is also between 40 and 60. The EMEA survey was conducted online while the NHIS...

Noticed that the data of these NHIS surveys is open-access and available here: https://www.cdc.gov/nchs/nhis/data-questionnaires-documentation.htm Had a quick look at the most recent data from 2023 (more recent than the Unger paper posted here). Summary 2023 NHIS survey 29522 adults...

The 14 projects funded by the ZonMw Long Covid program in the Netherlands has been published. It looks quite impressive. The total budget has been increased from 6 to 11.4 miljoen euros. https://www.zonmw.nl/nl/nieuws/honorering-van-projecten-biomedische-en-klinische-rondes-post-covid

Thanks!

Wrote a quick summary of FITNET-NHS on our blog: https://mecfsskeptic.com/fitnet-nhs-a-summary/

On page 41, the document itself says 61 treatment withdrawals for FITNET compared to 12 for AM. Not sure what the difference with the flow chart comes from.

These look like the main results. The Clinical Global Improvement Score and quality of life (EQ-5D-Y) are not shown but also showed no significant differences. The only results that point to a consistent effect is (self-reported) school attendance which was about 12% higher in the FITNET group.

Another remarkable figure that does not receive a lot of attention in the abstract: the percentage of patients completing 80% or more of expected modules/sessions was 78% in the Activity Management control group but only 37.4% of the intervention group.

They define the control treatment as if it was similar to pacing: But it seems more like graded exercise therapy (GET):

Haven't read the report yet but the research team of Crawley defined the minimal clinically important difference for this scale to be 10 points. So that would suggest that the effect they found was too small to be clinically significant. It also seems that it decreased to 4.4 points at the 12...

Traditional Neuropsychological Tests The following two traditional neuropsychological tests were used and took about 10 minutes to be completed. Test of Premorbid Functioning (TOPF (Pearson, 2009): The TOPF requires participants to read a list of 70 phonetically irregular words. The ability to...

A description of the tasks is available in the supplementary material. Except for the maze (GML) they seem rather easy tasks focusing on detection and memory. CogState Brief Screening Battery (CBSB) Detection Task (DET): Task stimuli are images of playing cards showing either red or black...