CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al

Trial By Error: Update on NICE Response to “Anomalies” Paper; Higher ME/CFS Population Estimates in CDC Survey

"Last month, the CDC released new estimates for the number of people in the US with ME/CFS. The figure—3.3 million, or 1.3% percent—raised eyebrows and made headlines. Previous estimates were significantly lower—from around one million to 2.5 million."

https://virology.ws/2024/01/03/tria...er-me-cfs-population-estimates-in-cdc-survey/

 

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 participated in the 2023 survey. 481 (1.63%) said that a doctor or healthcare professional had ever told them that they have Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME). 110 (23%) of these said do not still have CFS or ME.

That leaves 371 participants who said they currently have CFS or ME. Weighing these values according to US population demographics, this would mean that 2.8 million (1.09 %) out of 258 million adults report having CFS or ME.

Of the 371 ME/CFS patients, 266 (72%) were female compared to 54% in the entire sample of all respondents (hereafter named controls). Adult ME/CFS patients had a mean age of 59 compared to 53 in controls. If we plot the age distribution (ages higher to 85 were set to 85), we see that ME/CFS patients are significantly older than controls.



Looking at ethnicity, the prevalence of ME/CFS is slightly higher in Whites (78.9% versus 71.4%), and lower lower in Blacks/African Americans (9.8% versus 12.5%), Hispanics (12.5% versus 17.5%) and Asians (1.5% versus 6.4%). There isn’t a clear difference in education level with ME/CFS patients having fewer (rather than higher) academic degrees (level 7,8 and 9).



Legend:

0 Never attended/kindergarten only
1 Grade 1-11
2 12th grade, no diploma
3 GED or equivalent
4 High School Graduate
5 Some college, no degree
6 Associate degree: occupational, technical, or vocational program
7 Associate degree: academic program
8 Bachelor's degree (Example: BA, AB, BS, BBA)
9 Master's degree (Example: MA, MS, MEng, MEd, MBA)
10 Professional School or Doctoral degree (Example: MD, DDS, DVM, JD, PhD, EdD)
​

There are a ton of other health questions where the ME/CFS patients always report higher rates (perhaps more likely due to misdiagnosis, and reporting bias rather than a true connection with ME/CFS).

 

Unfortunately, that is not a reliable way to find true cases:
1. It's likely to bring in cases of people whoe were told they had chronic fatigue, and there is no independent validation of diagnosis, even of a subgroup.
2. Their prevalence curve indicates that ME/CFS becomes much more common with age. We know that is not the case (peak incidence in midlife according to Norwegian patient registry date and the recent EMEA 12k pan-European survey).

GIGO, sadly.

 

I know from the work you've done with the emea data that the main onset peak in that data is midlife as you say.

Mecfs skeptic's graph looks to be the age people are at the time of recording rather than their age at onset.

Did you look at the current age of pwME in the emea survey as well? Did it differ much? I guess I would imagine if pwME recover rarely it would cumulatively increase as people get older?

 

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 was done using interviews so that might also explain an age difference (assuming that older people are relatively less active online).

 

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.

 

precisely. what the CDC graph shows is that the rate for people in their mid 60s is much higher than those in their late 40s. We look at the Norwegian data, the best we have as it’s from a national health system, incidence falls dramatically from late 40s onwards. That is not consistent with what we see here.

Plus, clinical ME experts repeatedly tell us there’s a peak in midlife, not in older age.

We’ve seen this in a number of studies like this ow, and I don’t have the energy to debate their value of studies like this without seeing some validation of the cases identified. I commented on the US insurance study with similar issues (and similar questionable age profiles), and don't think I have anything worth adding to what I said there.

yes, it was the leap in prevalence by age that looks suspect