Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning, 2018, Valdez, Proskauer et al

We're not looking at age of onset here, we're looking at prevalence. So to me, it absolutely makes sense that as more people are diagnosed and do not die, the incidence should increase with each decade of life.

We have some evidence of earlier mortality, but it is quite preliminary.

 

Just as an aside, the CDC states that ME/CFS is most common in ages 40-60 (Wikipedia also quotes the CDC on this). A source is not given.

Edit: UpToDate says ME/CFS is primarily a condition of young to middle-aged adults (and cites a couple old Strauss papers). Many physicians read this.

 

I too have heard the weird onset divide, where in the UK (and sometimes in older US studies) they'll say 45 is the median age, and then more recent studies say onset tends to be far younger, (late 20s thru late 30s) with a secondary spike in the teens.

These all appear to refer to onset, however, not incidence -- [Edit: Though @Webdog I also feel unsure about that 40s-60s... I always read it as onset but I could be wrong.]

 

Absolutely. These are the ppl rich enough to have insurance and -- probably -- determined enough to keep going back, thru multiple misdiagnoses.

 

But this would only happen if people don't recover. So it could be interpreted as evidence of very low rate of recovery.

 

True enough!

 

I hope there's a follow-up study in that.

When you think about it, in order to do that, they will have to query thousands of people (and their clinicians). Meanwhile they have interesting data and should publish it in order to get the funding for follow-up with those people.

If it were me, I'd go for a certain percentage of those people, randomly chosen for follow-up. Getting even 1000 from the US, for example, would really go a long way towards giving us an idea of who was diagnosed by what criteria in which decade, for example, and whether that original diagnosis is in any way related to their symptoms. You could also find out who'd since been diagnosed with something else that could account for chronic fatigue.

But you couldn't do that kind of thing with a dataset this huge in its entirety, and if it were me, I'd make that a separate grant and a separate paper. For one thing, it will take quite some time to gather that information, because gathering it requires human input on the other end.

 

That is an excellent point - the graph reflects cumulative incidence combined with lack of recovery. This can be modelled with Dismod etc too.

 

True, its cumulative incidence and lack of recovery. But still, would we really expect prevalence of ME to rise in every 10 year interval and be the highest in those who are 80-89 years old? That would seem to suggest that new cases are arising in the 70-90 year old cohorts and/or people with ME are outliving other causes of death which is increasing the percent of those remaining that have ME. While preliminary, the evidence of early morbidity suggests the answer is not longer life of ME patients

 

Short blog on this study from Jackson Labs/Derya Unutmaz, https://jaxmecfs.com/2019/01/17/fro...e-demographics-and-costs-of-me-cfs/#more-1248