A crumb of a clue on epidemiology

Yes, on Google Trends, you can pick Metro or City for the subregion option.

Metro does make it more fine-grained into 210 areas, but the problem is that it becomes a lot harder to try to correlate it with other variables, since I think it'd be hard to find various stats like average income or ancestry subdivided in this way.

There's also the City option, but it looks like only 10 cities in the US have enough data to show.
I’m just coming out with random stuff now, isn’t a lot of Canada Scottish as well?
 
I’m just coming out with random stuff now, isn’t a lot of Canada Scottish as well?

Yeah, it looks to be higher than in the US:

Scottish Canadians
13.9% of the total Canadian population (2016)

Scottish Americans
8,422,613 (3.6%) Scottish alone or in combination

Also higher when considering the more general British ancestry:

British Canadians
32.5% of the total Canadian population (2016)

British Americans
18.4% of the total US population

If British ancestry were a risk factor for ME/CFS, then presumably we'd see a larger prevalence in Canada. I don't know if we have any good studies on that.

But if we are considering the Google Trends data for the past 22 years, the search interest in Canada for ME/CFS is only barely higher than in the US (scores are 18 vs. 16), which seems to go against the idea of British propensity for ME/CFS.
 
One slightly frustrating thing about Google Trends is that the data does not appear to be consistent if downloaded on different days, even if representing the same time span and search term.

The 22 year data for ME/CFS I was using was downloaded on 2026-03-24, and represents the time span of 2004-01-01 to 2004-03-24. I re-downloaded the data for the same time span today, and it is not the same. Of course, I probably shouldn't have included the present date of March 24 within the range of the time span for the original download, as the day wasn't done yet, but the additional few hours shouldn't meaningfully change the results that represent 22 years of data.

Others have commented about the inconsistency elsewhere, with the explanation given that the Trends data is not based on all Google searches, but is instead based on a relatively small sample. On a different day, the search interest for a topic could have been recalculated with a different sample, changing the results.

Thankfully, the values don't change by a huge amount. Here I have plotted the data I used for the previous analyses based on the 22 years of ME/CFS trends data, against the data I have re-downloaded today based on the same time span.

1775235204677.png

It's highly correlated, so shouldn't change results too much, but I wanted to note this to avoid confusion in case anyone follows the links to the Trends data I provided and sees that what it shows doesn't exactly match what I described in my posts.
 
Moving right along in our data mining operation...

CDC Wonder is a website which provides access to several interesting public health datasets. I downloaded age-standardized rates of causes of death grouped by state from the Multiple Cause of Death 1999 - 2020 dataset.

This dataset gives the rate of a cause of death in a state whether it was the single "underlying" cause of death, or if it was one of up to 20 additional contributing causes of death listed on the death certificate.

After filtering to only causes which all states had data for, I was left with 598 causes.

I tested Spearman correlation between each cause of death and the Google Trends ME/CFS data (using the same dataset I was using previously: 2004/01/01-2026/03/24), both with and without covariates added for potential confounders.

I added a few more covariates for this analysis that I didn't use previously: proportion of state that has never smoked, sex distribution, healthcare access (proportion who have been to the doctor in the past year) and age. Sources for all covariates:
  • Sex ratio
    • DP05, Estimate!!SEX AND AGE!!Total population!!Sex ratio (males per 100 females)
  • Age
    • DP05, Estimate!!SEX AND AGE!!Total population!!Median age (years)
  • Education
    • DP02, Percent!!EDUCATIONAL ATTAINMENT!!Population 25 years and over!!Bachelor's degree or higher
  • Internet access
    • DP02, Percent!!COMPUTERS AND INTERNET USE!!Total households!!With a broadband Internet subscription
  • Language spoken at home
    • DP02, Percent!!LANGUAGE SPOKEN AT HOME!!Population 5 years and over!!English only
  • Income
    • S1903, Estimate!!Median income (dollars)!!HOUSEHOLD INCOME BY RACE AND HISPANIC OR LATINO ORIGIN OF HOUSEHOLDER!!Households
  • Rurality
    • P2, proportion calculated from (!!Total:!!Rural)/(!!Total: )
  • Healthcare access
    • BRFSS, About how long has it been since you last visited a doctor for a routine checkup? Within the past year
  • Smoking
    • BRFSS, Smoker Status - Never smoked

These are the 15 most significant Spearman correlations for cause of death vs. ME/CFS searches in a state, ranked by p-value controlling for covariates:
Cause of deathSpearman R (Univariate)P value (Univariate)Spearman R (with covariates)P value (with covariates)Spearman P value (with covariates, Bonferroni)Spearman P value (with covariates, FDR)
1Muscular dystrophy (G71.0)0.5345.4E-050.6062.1E-050.01250.0125
2Alcohol, unspecified (T51.9)0.5081.4E-040.5795.9E-050.03520.0176
3Poisoning by and exposure to other and unspecified drugs, medicaments and biological substances, undetermined intent (Y14)0.3875.0E-030.5581.2E-040.07350.0245
4Perforation of intestine (nontraumatic) (K63.1)0.4962.1E-040.5214.0E-040.23970.0599
5Rheumatic heart disease, unspecified (I09.9)0.5131.2E-040.4968.3E-040.49380.0854
6Malignant melanoma of skin, unspecified - Malignant neoplasms (C43.9)0.6161.5E-060.4958.6E-040.51230.0854
7Other and unspecified narcotics (T40.6)0.3142.5E-020.4881.0E-030.61810.0883
8Crohn disease, unspecified (K50.9)0.5963.9E-060.4791.3E-030.80000.1000
9Vascular disorder of intestine, unspecified (K55.9)0.4003.6E-030.4741.5E-030.90460.1005
10Methadone (T40.3)0.4962.1E-040.4671.8E-0310.1084
11Motor neuron disease (G12.2)0.6541.9E-070.4632.0E-0310.1084
12Sequelae of complications of surgical and medical care, not elsewhere classified (T98.3)0.4371.4E-030.4562.4E-0310.1101
13Acute vascular disorders of intestine (K55.0)0.2379.5E-020.4562.4E-0310.1101
14Other synthetic narcotics (T40.4)0.2784.8E-020.4483.0E-0310.1190
15Sequelae of surgical and medical procedures as the cause of abnormal reaction of the patient, or of later complication, without mention of misadventure at the time of the procedure (Y88.3)0.4082.9E-030.4443.3E-0310.1190
Only two causes were significant after strict Bonferroni correction with a 0.05 threshold: muscular dystrophy and alcohol. Poisoning was also below the 0.05 if correcting with FDR.

Alcohol is interesting because it aligns with the results of the previous analysis where we found high correlations with drugs meant for reducing alcohol cravings.

Here is a map showing rates for muscular dystrophy, which had the largest correlation. It doesn't show the distinct grouping of high values seen in both upper corners for both ME/CFS searches and British ancestry.
33Rvq-muscular-dystrophy-g71.0-age-adjusted-rate-.png

And a plot of ME/CFS search trends vs. muscular dystrophy rate (note the stats in the corner are univariate Pearson stats):
1775249001619.png

Edit: I attached a spreadsheet with correlation results for all causes.
 

Attachments

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Fascinating discussion.
I tried to look for cases of different drugs correlated in the same direction and which treat the same disease:
Interesting to see losartan (and the other "sartans") in the negative correlation. I think they may have some effect in lowering or preventing increases in TGF-B? Which if I have understood correctly is one of the few somewhat consistent ME/CFS immune findings.

This almost certainly has nothing to do with losartan being "protective" against ME/CFS, and is possibly related to HBP being common in people with diabetes, which as noted earlier is more prevalent in the US South.

But since we are discussing crumbs of clues...
 
As a sensitivity check to see how much the changes in Google Trends data downloaded on different days would affect the correlations, I redid the above cause of death correlation analysis, but with the re-downloaded Google Trends ME/CFS data for the same time span (2004/01/01 - 2026/03/24).

These are, again, correlations of state search interest for ME/CFS with rates for state-wide cause of death.

There were some shifts in results, but it's still very similar. Muscular dystrophy became less significant, but death due to alcohol was still Bonferroni significant.

Cause of deathSpearman R (Univariate)P value (Univariate)Spearman R (with covariates)P value (with covariates)P value (with covariates, Bonferroni)P value (with covariates, FDR)
1Alcohol, unspecified (T51.9)0.5384.6E-050.6072.0E-050.0120.012
2Sequelae of surgical and medical procedures as the cause of abnormal reaction of the patient, or of later complication, without mention of misadventure at the time of the procedure (Y88.3)0.4281.7E-030.5352.6E-040.1560.042
3Sequelae of complications of surgical and medical care, not elsewhere classified (T98.3)0.4538.6E-040.5352.6E-040.1580.042
4Rheumatic heart disease, unspecified (I09.9)0.5493.0E-050.5332.8E-040.1680.042
5Muscular dystrophy (G71.0)0.4411.2E-030.5223.9E-040.2360.043
6Intentional self-poisoning by and exposure to other and unspecified drugs, medicaments and biological substances (X64)0.4774.0E-040.5145.0E-040.2960.043
7Vascular disorder of intestine, unspecified (K55.9)0.3944.2E-030.5135.2E-040.3090.043
8Other and unspecified narcotics (T40.6)0.3756.7E-030.5076.1E-040.3640.043
9Motor neuron disease (G12.2)0.6591.5E-070.5017.2E-040.4310.043
10Other synthetic narcotics (T40.4)0.3291.8E-020.5017.3E-040.4340.043
11Heroin (T40.1)0.3993.8E-030.4978.0E-040.4810.044
12Methadone (T40.3)0.5091.3E-040.4841.2E-030.7040.056
13Poisoning by and exposure to other and unspecified drugs, medicaments and biological substances, undetermined intent (Y14)0.3202.2E-020.4821.2E-030.7270.056
14Embolism and thrombosis of unspecified vein (I82.9)0.4391.3E-030.4622.1E-0310.075
15Crohn disease, unspecified (K50.9)0.5483.1E-050.4622.1E-0310.075

Edit: Also note that since these correlations are based on any of multiple causes from a death certificate, some of the different high correlations, such as "intentional self-poisoning" and "poisoning", could be largely describing the same deaths.
 
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It's kind of difficult to see the actual pattern among states on the Google Trends map for ME/CFS, so I made a map with much more contrast.

IFnn7-google-trends-myalgic-encephalomyelitis-chronic-fatigue-syndrome-1-1-04-3-24-26-.png

The two upper corners of the country seem to have the highest scores for ME/CFS searches.
Intriguing...I found another variable (with the help of some brainstorming with AI) that clusters in the two upper corners: higher physical activity.

- https://www.worldlifeexpectancy.com/explore/usa/physical-activity-regular/map
1775355787655.png

The data from that map is at this link. I did a quick linear regression with the trends data, without any covariates, and R^2 is 0.21. So still not really getting to the R2 of 0.35-0.5 we were getting with Scottish/English ancestry correlated with trends. But maybe there's something here. Maybe there's a better physical activity metric that would correlate better.

It could theoretically make sense. More physical activity could increase risk of someone with underlying risk of ME/CFS getting their first PEM.

This was with 2023 physical activity data using the variable "Percent of adults who achieve at least 150 minutes a week of moderate-intensity aerobic physical activity or 75 minutes a week of vigorous-intensity aerobic activity".

I also first tried the regression with 2015 data using a slightly different variable that doesn't include the vigorous activity part, and the result was pretty much the same with R2=0.22.
 
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It occurs to me that the p-values I've reported for the correlations are probably not totally valid, since the observational units being tested here (states) are not really independent from each other. For example, states near each other will tend to be more similar to each other than to far away states for various metrics, which would skew p-values down.

But we can focus on the magnitude of the correlations to at least probe possible connections to ME/CFS searches.

That correlation with British ancestry is so interesting to me because it is remarkably high for being based on a hunch. I really want to see if it's possible to identify why they're correlated. Whether it's genetics, awareness, or something else, I feel like there should be some way to figure it out. My best idea at this point is testing correlations with lots of other variables to try to find something even more strongly correlated than ancestry.
 
Where are the best known ME/CFS and LC research groups, clinics and specialists?

Has someone already checked that? I've been following the thread from the start but can't remember.
I appreciate we might have to compile a list of people/institutions/businesses and corresponding locations first.
 
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