Hi everyone. I am planning to put out a hypothesis article with Jo Cambridge and Jackie Cliff shortly. I am struggling to find some key citations and would welcome help. I will post specific queries as I go through the text.
The first one is a US study on prevalence of ME/CFS which indicates that people may get an ME diagnosis when they do not themselves report features that would qualify for criteria (i.e that there is over diagnosis as well as under diagnosis). Can anyone remember this one?
On US studies exploring overdiagnosis - there's this Komaroff et al paper that surveyed nurses: "Over-diagnosis also was common: four times as many subjects had been diagnosed with ME/CFS by community doctors as actually met criteria." https://www.tandfonline.com/doi/full/10.1080/21641846.2017.1323576 and a Jason Long COVID study: "Among the 465 participants, 58% met a ME/CFS case definition. Of respondents who reported that they had ME/CFS only 71% met criteria for ME/CFS and of those who did not report they had ME/CFS, 40% nevertheless did meet criteria for the disease: both over-diagnosis and under-diagnosis were evident on self-report." https://www.mdpi.com/2035-8377/15/1/1 and a Baraniuk Oxford/Fukuda prevalence comparison: "Chronic Fatigue Syndrome prevalence is grossly overestimated using Oxford criteria compared to Centers for Disease Control (Fukuda) criteria in a U.S. population study" https://pmc.ncbi.nlm.nih.gov/articles/PMC6407870/pdf/nihms-1502739.pdf
"Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012" https://bmcmedicine.biomedcentral.com/articles/10.1186/s12916-014-0167-5
Not the study you’re asking for, but a recent Norwegian one found both under- and over diagnosis with regards to ICD G93.3 and the CCC. https://www.s4me.info/threads/impro...opulation-sampling-kielland-et-al-2025.43293/
One more for over- and under-diagnosis: Possible Racial Disparities in the Diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (Jones, Younger. 2025. International Journal of Environmental Research and Public Health)
At the risk of asking an 'Are we nearly there yet?' question from the back seat of the car, does this, and the fact that you're doing citations, mean that you're ready to put the article up a lot faster than in a month, as you originally expected?
No, it means that I need to get my citations in order so that I can reasonably ask the other two to look over the draft and check they think the citations are suitable, as well as checking that the text makes sense at all.
Is this the US study? Estimating Prevalence, Demographics, and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning I'm guessing this is not the right study because it talks about slightly different things.
By the way, my impression is that in some countries, like Italy, in comparison to the UK, it is more difficult to get a diagnosis of ME/CFS, unless the illness is severe. In Italy these undiagnosed patients are likely to get a FM diagnosis instead because the willingness to diagnose that and awareness appears to be higher. In some countries like the UK there may be significant overdiagnosis. So one should keep in mind that over and underdiagnosis could vary very significantly between healthcare systems. I suspect that the absence of data on number of diagnoses in a given country indicates underdiagnosis.
I’m not quite sure what you want with your prevalence citation, but this Louis Nacul in study is interesting based on the British Columbia population survey. 1.1% people self reported CFS, but only a third of these of these met questionnaire-assessed criteria. > The population prevalence rates were 1.1% and 0.4% for self-reported and confirmed ME/CFS cases respectively. This overdiagnosis issue properly also applies to recent CDC population survey. pre-print here, I’m not sure if it’s been published yet https://www.medrxiv.org/content/10.1101/2024.05.16.24307437v1
My impression too. Outside of western anglophone countries and germanic and nordic countries. There seems to be extremely little awareness compared to a country like the UK where nearly everyone has heard the word “ME” or “CFS” before.
