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

[Wyva]

Key findings

Data from the National Health Interview Survey

• In 2021–2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
• The percentage of adults who had ME/CFS increased with age through ages 60–69 and then declined among those age 70 and older.
• White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.
• Adults with a family income less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%).
• The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystem illness characterized by activity-limiting fatigue, worsening of symptoms after activity, and other symptoms (1). It affects all age, sex, and racial and ethnic groups and costs the U.S. economy about $18–$51 billion annually (2–5). This report describes the percentage of adults who had ME/CFS at the time of interview by selected demographic and geographic characteristics based on data from the 2021–2022 National Health Interview Survey (NHIS).

Open access: https://www.cdc.gov/nchs/products/databriefs/db488.htm

 

[EndME]

In 2021–2022, 1.3% of adults had myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Wow, roughly 4,3 million people in the US alone and this does not include undiagnosed patients as the survey is based on a doctors diagnosis! If true, that would be an extremely high prevalence, between 3-4 times that of MS or roughly double of MS and HIV combined. I wonder how much of an increase is being seen due to LC (on the other hand most clincians are resistent to call it ME/CFS after COVID ME/CFS and prefer to stick with the singular diagnosis of LC)?

Adults with a family income less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%).

Is that an ME/CFS specific thing or is that uniformly seen in other diseases, for example MS, as well? How much of it has to do with ME/CFS patients not being able to work at all or not being able to work full-time anymore due to their illness?

The percentage of adults who had ME/CFS increased with age through ages 60–69 and then declined among those age 70 and older.

Slightly more shaped towards elderly than I was expecting, but that might be explainable by it being a non-fatal disease (at least in terms of direct disease mechanisms). Comparison: How would the demographics of MS look like if it was less fatal, i.e. MS patients only had a slightly lower life expectancy post diagnosis? Perhaps also some historical bias from older criteria like Fukuda coming in, but I doubt that plays a mayor role since even currently the application of diagnostic criteria seems extremely messy amongst clinicans.

How robust are such surveys usually for other diseases? Can such a survey even reach the severe and very severe patients (it seems to require an interview at home and further telephone interviews)?

 

[Wyva]

Wow, roughly 4,3 million people in the US alone and this does not include undiagnosed patients as the survey is based on a doctors diagnosis! If true, that would be an extremely high prevalence, between 3-4 times that of MS or roughly double of MS and HIV combined. I wonder how much of an increase is being seen due to LC (on the other hand most clincians are resistent to call it ME/CFS after COVID ME/CFS and prefer to stick with the singular diagnosis of LC)?

There have been some articles about this (I guess a press release was sent out). Here is the one from the Associated Press with some relevant quotes:

The Centers for Disease Control and Prevention’s number is larger than previous studies have suggested, and is likely boosted by some of the patients with long COVID. The condition clearly “is not a rare illness,” said the CDC’s Dr. Elizabeth Unger, one of the report’s co-authors.

(...)

The report relied on patients’ memories, without verifying their diagnoses through medical records.

That could lead to some overcounting, but experts believe only a fraction of the people with chronic fatigue syndrome are diagnosed, said Dr. Daniel Clauw, director of the University of Michigan’s Chronic Pain and Fatigue Research Center.

“It’s never, in the U.S., become a clinically popular diagnosis to give because there’s no drugs approved for it. There’s no treatment guidelines for it,” Clauw said

The tally likely includes some patients with long COVID who were suffering from prolonged exhaustion, CDC officials said.​

 

[SNT Gatchaman]

and costs the U.S. economy about $18–$51 billion annually

Somebody should really get on that.

 

[EndME]

Somebody should really get on that.

Doing something about that is clearly not an option.

Instead, perhaps the general public and especially these economists overfocused on facts and evidence should have to do CBT so that they can ignore these high economic costs and don’t become hypersensitive to them? Is CBT for economists a new field for Knoop? Possibly the graded approach following the principle “the costs are low -> the costs don’t exists -> the costs are neurocognitive imaginations of self-fulfilled prophecies” where all proofs of evidence follow by magic, should be used?

 

[duncan]

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystem illness characterized by activity-limiting fatigue, worsening of symptoms after activity, and other symptoms (1).

Doesn't sound like anything much to be concerned about if I'm an uninformed clinician. Especially the "and other symptoms" part. Or the "activity-limiting fatigue" for that matter.

• White non-Hispanic (1.5%) adults were more likely to have ME/CFS compared with Asian non-Hispanic (0.7%) and Hispanic (0.8%) adults.
• Adults with a family income less than 100% of the federal poverty level (2.0%) were more likely to have ME/CFS, followed by those at 100–199% (1.7%), and those at or above 200% (1.1%).
• The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.

So, Deliverance types.

costs the U.S. economy about $18–$51 billion annually

Reckon tending stills and picking banjos instead of working for a living.

 

[ME/CFS Skeptic]

Suspect the data might not be very reliable but still found this notable:

The percentage of ME/CFS increased with increasing rurality, from 1.0% and 1.1% in large central and large fringe metro areas, respectively, to 1.5% in medium and small metropolitan areas and 1.9% in nonmetropolitan areas.
​

Does not fit the 'yuppie flu' narrative very well.

 

[duncan]

• The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.

I wouldn't be surprised if this, if accurate, is more peculiar to the US than some other countries, and reflects the folding in of many vector-borne diseases.

 

[ukxmrv]

I wouldn't be surprised if this, if accurate, is more peculiar to the US than some other countries, and reflects the folding in of many vector-borne diseases.

Or having to move somewhere cheaper to live?

 

[LarsSG]

Interesting that this is very similar to the Canadian census data from 2014, which found 1.4% of adults reporting CFS, with a similar breakdown between men and women as well (1.0% versus 1.7%). The Canadian survey also asked specifically about diagnosis by a health professional as this US ones does.

 

[rvallee]

“It’s never, in the U.S., become a clinically popular diagnosis to give because there’s no drugs approved for it. There’s no treatment guidelines for it,” Clauw said

Cause. Effect. Cause. Effect. Cause...

Another obvious framing for this would be that it's never been a clinically popular diagnosis to give, and this is the reason why there are no treatments for it, which is what feeds the unpopularity, which is what feeds the lack of treatments, and so on and on and on.

Or put another way: to get results, you have to put in some effort. No effort was put towards this, hence no results, leading to learned helplessness impairing all efforts towards getting any results. This is as textbook a self-fulfilling prophecy as it gets.

 

[rvallee]

Suspect the data might not be very reliable but still found this notable:

The percentage of ME/CFS increased with increasing rurality, from 1.0% and 1.1% in large central and large fringe metro areas, respectively, to 1.5% in medium and small metropolitan areas and 1.9% in nonmetropolitan areas.
​

Does not fit the 'yuppie flu' narrative very well.

The trend of long haulers who lived in cities moving out because it's too expensive to live in a city with little to no income is likely the main explanation. I used to live in a large city. I don't anymore, because I had to move back with my parents. This is a common scenario.

 

[Fizzlou]

If as estimated (forgot where) 90% of pwME are undiagnosed then that would be 13% of population fit in the ME criteria. (Doubtful)
Calculation: 1.3% had known diagnosis represent 10% of all cases

 

[duncan]

"Have you ever been told by a doctor that you have CFS or ME?" is not really meaningful. You think most doctors - or other "health professionals" - in the US understand what to look for? This was a garbage diagnosis 30 years ago, and it remains a garbage diagnosis for most clinicians - who were not taught about ME or CFS in medical school. It's a get out of jail free card. Patients who self-diagnose will probably prove more accurate because they will by and large put more effort and time actually learning about it. Becuase they care, they have vested interests that extend beyond leaving the clinic early or foisting off a difficult patient.

The CDC has a crappy history of posturing and misdirection when it comes to some diseases, and this seems to me to continue that arc. Look at its description of ME/CFS:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, multisystem illness characterized by activity-limiting fatigue, worsening of symptoms after activity, and other symptoms (1

It not only minimizing the disease, it's inaccurate. They couldn't come up with a better qualifier for fatigue than "activity-limiting"? Most aches and pains of every day life can be activity-limiting. Where's PEM? Where's severity? Where's duration? Cavalier mischaracterizations can do a disservice to a lot of sick people, and help reinforce striking misconceptions among medical professionals.

The demographics are meaningless if they are asking about the wrong disease, or clinicians are copping out. Which I can assure you they are doing far more than they should.

 

[LarsSG]

If as estimated (forgot where) 90% of pwME are undiagnosed then that would be 13% of population fit in the ME criteria. (Doubtful)

I think you have two factor that balance each other out to some degree. Many people who have ME are undiagnosed, but also if you ask people “Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?” some percentage of people are going to say, oh yes, my doctor said I have a chronic condition that includes fatigue, that must be what they are asking about. If you look at the prevalence by age group (much higher for 50-69, much lower from 18-50), it seems likely that a fair bit of that is going on.

 

[Fizzlou]

Yes agree @LarsSG i don’t trust any statistics re prevalence of ME diagnosis. The term chronic fatigue has done a lot of damage both ways.

 

[RedFox]

Surveys have their flaws. Sometimes people answer incorrectly. But I guess every way of getting this data has flaws. This estimate is on the high side. 330M Americans x 75% adults x 1.3% ME prevalence is 3.22M adults with ME. The IOM report estimated 835k to 2.5M.

 

[CRG]

If you look at the prevalence by age group (much higher for 50-69, much lower from 18-50), it seems likely that a fair bit of that is going on.

It depends on your model of disease. If you consider ME/CFS to be a condition frequent in the under 40s but with a high recovery rate, and as a disease of low incidence in older age groups, then indeed population prevalence would give a nice fat christmas tree with high levels at the base, tappering off in older age. But, if one were to consider ME/CFS incidence to be largely flat across the age profile but where recovery rates are low, then the prevalence profile would be an inverted pyramid with the numbers increasing with age until mortality takes over.

In the absence of clear data on recovery rates at any age, a global prevalence described by an inverted pyramid that only reduces in parallel with global mortality should be considered at least a possibility. Notwithstanding the exceptionally high numbers in the CDC report, the pattern across age may reflect the real underlying prevalence of ME/CFS.

 

[SNT Gatchaman]

The percentage of adults who had ME/CFS increased with increasing rurality of their place of residence.

I wouldn't be surprised if this, if accurate, is more peculiar to the US than some other countries, and reflects the folding in of many vector-borne diseases.

The trend of long haulers who lived in cities moving out because it's too expensive to live in a city with little to no income is likely the main explanation.

There may also be a contribution from organophosphate exposure.

 

[RedFox]

It depends on your model of disease. If you consider ME/CFS to be a condition frequent in the under 40s but with a high recovery rate, and as a disease of low incidence in older age groups, then indeed population prevalence would give a nice fat christmas tree with high levels at the base, tappering off in older age. But, if one were to consider ME/CFS incidence to be largely flat across the age profile but where recovery rates are low, then the prevalence profile would be an inverted pyramid with the numbers increasing with age until mortality takes over.

In the absence of clear data on recovery rates at any age, a global prevalence described by an inverted pyramid that only reduces in parallel with global mortality should be considered at least a possibility. Notwithstanding the exceptionally high numbers in the CDC report, the pattern across age may reflect the real underlying prevalence of ME/CFS.

It's clear that recovery from ME/CFS is rare. The most common course seems to be onset between ages 10 and 40, lifelong illness, then death not directly related to ME.