Leonard Jason research finds that many young people have ME/CFS (Simon M blog)

[Simon M]

Leonard Jason research finds that many young people have ME/CFS



A new study finds that 0.75%, or 1 in 130 young people, have ME.CFS. That's a lot of people living with the illness. Only 5% of those diagnosed with the illness already had a diagnosis. Prevalence increased rapidly as children moved into adolescence. And ME/CFS appears to be more common among African-American and Hispanic young people than among whites.

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How do you find out how common an illness is when it is hard to diagnose, most doctors know little about it and many of them dismiss it as trivial? ME/CFS is such an illness. Asking doctors to report the number of people they have diagnosed is likely to miss many real cases and studies using this method concluded that ME/CFS is rare. A better approach, used by a new study, is to screen large numbers of people in the community to find those that might have the illness, then give those people a thorough medical workup to establish who actually has it.

The prevalence of paediatric ME/CFS in a community-based sample (Jason, 2020)

Professor Leonard Jason (pictured above) and Dr Ben Katz led the new study and they estimated that 0.75% of young people aged 5 to 17 have ME/CFS, roughly one in every 130. The estimate isn’t exact, and the study authors say the figure could be as low as 0.54% and as high as 0.96%. Even using the low estimate would mean 290,000 in the US have the illness, along with 55,000 in the UK (LINKS). Which suggests that ME/CFS is far from rare and is ruining a lot of young lives.

Worryingly, the study also found that only 1 in 20 of the young people they diagnosed with ME/CFS already had a diagnosis. Though perhaps this is not so surprising, given that other studies in the US have found that only 10% to 15% of adults who have ME/CFS actually have a diagnosis.

ME/CFS is more common in older and non-white under 18s
This study collected data from 10,000 young people with diverse ethnic backgrounds and was able to estimate how common ME/CFS is in people with different ethnicity. It found that the illness was significantly more common among African American1.1% prevalence) and Hispanic (1.3%) young people than among whites (0.63%).

ME/CFS also becomes increasingly common as children move into adolescence, as the graph below shows.


Percentage of each age group with ME/CFS
The authors suggested the changes with age could be due to the hormonal and psychological changes of adolescence. It could, they say, also be due to children being exposed to more environmental and biological factors as they get older. One factor in the increase is likely to be glandular fever (infectious mononucleosis), which leads to ME/CFS for about one person in ten. Glandular fever becomes more common in adolescence because the virus that triggers it is spread by kissing.

How the study worked
bonus pic!

Read the full blog

 

[Trish]

Thread on the research here:
https://www.s4me.info/threads/the-p...ommunity-based-sample-2020-jason-et-al.13315/

 

[ME/CFS Skeptic]

Thanks @Simon M for this interesting blog. A really good overview.

One thing I hadn't thought about is how ME/CFS prevalence increases with age in children. It seems that this study found a clear trend for this. Together with the higher prevalence of ME/CFS in women compared to men, that might be an important clue into predisposing factors.

I hadn't much considered that the prevalence estimate include very young ages from 5 to 11. So for children going to high school (12 to 18 years), the prevalence would be somewhere around 1%. I got il as a teenager in a school of approximately 1500 students. So there should have been approximately another 14 students suffering from ME/CFS at that school at that time.

That seems quite unlikely. The school staff didn't really know much about the illness I had. They didn't say they had or remembered another student that had similar symptoms and had to drop out. You could argue that many of these patients might not have been diagnosed, but I don't think the label matters much; I suspect that the school staff would have noticed if a couple of other students were having trouble following classes because of extreme exhaustion or because they didn't recover from a viral infection.

In addition, there is good access to medical care in my region and a couple of years before I got ill the government created national CFS centres, (one was approximately a half-hour drive away from my school). I suspect there might have been stories of students with ME/CFS at my school that didn't reach me (for example because they were a lot younger) or the school board (because their illness was milder than mine or whatever) but 14 other students with ME/CFS at the same time I was going to school there that seems a little too high.
Based on my personal experience I suspect that the prevalence rate is lower.

EDIT: Because our school was quite large, there was one staff person who followed up on patients with learning difficulties, including no longer being able to follow classes because of illness. So I expect she (or her predecessor or colleagues in a similar position at other schools) would notice ±15 simultaneous cases of ME/CFS. The view that persons in a position like her have, is probably more representative and significant than the view doctors have, especially specialist who's sample suffers from selection bias. I think that if 1% of children develop ME/CFS it wouldn't be the poorly known illness it is today as people in a position like her would see it constantly. Based on personal experience, I think the true prevalence will be lower, more towards 0.1% than towards 1%.

 

[Andy]

@Simon M , a few minor issues.

Even using the low estimate would mean 290,000 in the US have the illness, along with 55,000 in the UK (LINKS).

I'm guessing that (LINKS) was a reminder to yourself that no longer needs to be there?

It found that the illness was significantly more common among African American1.1% prevalence) and Hispanic (1.3%) young people than among whites (0.63%).

The first percentage isn't in brackets like the other two. Also space needed between "American" and 1.1% and the bracket after prevalence needs deleting.

These calls identified 23,000 households with children

There is a strange symbol, that doesn't copy so I can't show it here, after "children" on my screen.

This is a general trends: people are increasingly and willing to take part in telephone surveys.

"s" after trend needs deleting, "and willing" should be "unwilling"?

 

[Simon M]

@Simon M , a few minor issues.


I'm guessing that (LINKS) was a reminder to yourself that no longer needs to be there?


The first percentage isn't in brackets like the other two. Also space needed between "American" and 1.1% and the bracket after prevalence needs deleting.


There is a strange symbol, that doesn't copy so I can't show it here, after "children" on my screen.


"s" after trend needs deleting, "and willing" should be "unwilling"?

Thanks for the blooper spots! Migraines for the last 4 days so just pushed this out and appreciate someone helping mop up.

the prevalence would be somewhere around 1%. I got il as a teenager in a school of approximately 1500 students. So there should have been approximately another 14 students suffering from ME/CFS at that school at that time.

That seems quite unlikely.

Very interesting point. Would be useful to get the view of a young people's charity eg Tymes Trust on the prevalence estimate.

For those that do social media and want to share:

 

[Snow Leopard]

Thanks @Simon M for this interesting blog. A really good overview.

One thing I hadn't thought about is how ME/CFS prevalence increases with age in children. It seems that this study found a clear trend for this. Together with the higher prevalence of ME/CFS in women compared to men, that might be an important clue into predisposing factors.

I hadn't much considered that the prevalence estimate include very young ages from 5 to 11. So for children going to high school (12 to 18 years), the prevalence would be somewhere around 1%. I got il as a teenager in a school of approximately 1500 students. So there should have been approximately another 14 students suffering from ME/CFS at that school at that time.

Try not to confuse prevalence with incidence. Cumulative incidence over 10 years (from ages 5-15) of 0.1% with 25% recovering within a year or so would lead to cumulative prevalence of around 0.75%

If these children are not recovering, then you would expect an accumulation of prevalence as age increases. Also, if those children who became ill at earlier ages were too ill to attend school, then they wouldn't be counted in that 1500.

The prevalence estimate could suffer from significant false positives, namely children who have fatigue due to other reasons that has not been diagnosed yet (although they did undergo a basic physical exam by a physician during the study) - and this may explain part of the bias for higher prevalence of Latinx and African American children who may have poorer access to high quality medical diagnosis due to socio-economic reasons.

 

[ME/CFS Skeptic]

then you would expect an accumulation of prevalence as age increases.

Right but not as fast as the graph shows, I assume. I suspect the prevalence doesn't keep increasing like this for people in their 20s and 30 (or does it?)

 

[ME/CFS Skeptic]

If these children are not recovering, then you would expect an accumulation of prevalence as age increases. Also, if those children who became ill at earlier ages were too ill to attend school, then they wouldn't be counted in that 1500.

Good point forgot to take that into account. Had a look at the data from the Jason study and only 7 out of 42 (16.7%) of the ME/CFS patients were younger than 12.

I don't think that a majority of the patients younger than 12 will have become so ill that they were never able to attend high-school at all. Even if this was the case, there would have still been ±13 co-students suffering from ME/CFS at my school (Edit: we don't know age of onset, so this was just an estimate). That seems too high, I think people would have picked up on such a high prevalence.

 

[Snow Leopard]

Right but not as fast as the graph shows, I assume. I suspect the prevalence doesn't keep increasing like this for people in their 20s and 30 (or does it?)

For what it's worth, I believe there is an age incidence peak somewhere between 12-18 too.

I too was ill when I was a teenager and none of my peers in our youth peer support group attended regular school, instead utilising "open access" schooling which is a distance education/homeschool hybrid.

 

[ScottTriGuy]

I got il as a teenager in a school of approximately 1500 students. So there should have been approximately another 14 students suffering from ME/CFS at that school at that time.

If only 1 in 20 kids get a diagnosis, that means the other 19 got either no diagnosis (MUS?) or wrong diagnosis (probably depression / anxiety / etc).

So the school nurses would probably think that their teen patients have a mood disorder, especially since the delayed response to exertion (PEM) is mostly unknown and hard to discern unless you're looking for it.

So there may have been another 14 or so students with ME at your school, but were maybe misdiagnosed with a mood disorder.

 

[FMMM1]

For what it's worth, I believe there is an age incidence peak somewhere between 12-18 too.

I too was ill when I was a teenager and none of my peers in our youth peer support group attended regular school, instead utilising "open access" schooling which is a distance education/homeschool hybrid.

There is a Norwegian study which shows this peak --- data is for girls though.

 

[ME/CFS Skeptic]

If only 1 in 20 kids get a diagnosis, that means the other 19 got either no diagnosis (MUS?) or wrong diagnosis (probably depression / anxiety / etc).

So the school nurses would probably think that their teen patients have a mood disorder, especially since the delayed response to exertion (PEM) is mostly unknown and hard to discern unless you're looking for it.

So there may have been another 14 or so students with ME at your school, but were maybe misdiagnosed with a mood disorder.

At the beginning, I didn't have a CFS diagnosis either and even when I got one, it was quite uncertain if this was the correct diagnosis. So I don't think this is about diagnostic labels. It could be that the school staff mistake ME/CFS for a mood disorder, but they might have just as well thought the same about me. Nonetheless, they seemed to think that what happened to me was strange and they didn't give examples of other patients experiencing something similar.

I don't think this has much to do with recognizing PEM or not. At the school, they could have known about other patients struggling to following classes because they were constantly exhausted or feeling ill and where doctors couldn't really figure out what's wrong. You don't have to know anything about PEM, ME or CFS to pick that up.

I remember that a few teachers came to visit me after I had to drop out of school. They talked about my illness with me and my parents and it was basically us explaining that we heard about other cases through doctors or friends who heard about someone in a similar situation. The teachers didn't know which would be something quite bizarre if approximately 13 students at the school were suffering from this illness at any point in time. I assume that teachers would have heard about a similar story from one of their colleagues for example.

Anyway, so far my personal anecdote. The reason for going into this is that the school environment is, I think, an adequate tool to get an intuitive idea of prevalences. You pretty much have a representative sample of the population that is constantly being monitored. I hope others make the same thought experiment, to see if they would come to the same conclusion. My guess is that with a prevalence of around 1% a devastating illness such as ME/CFS would have been picked up, even if school staff don't know how to name it.

 

[inox]

There is a Norwegian study which shows this peak --- data is for girls though.

Yes, the Bakken et al study from 2014 found peaks for teens/per-teens.

That study do have data for both genders though, even if coverage often focus on the very large peak for young females They actually found a similare peak for young males, just with about half as many cases in the gender ratio.

See figure 1:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4189623/#!po=0.892857

 

[Mij]

Was dysautomomia ruled out in the study?

Dysautonomia (my bolding).

Childhood dysautonomia conditions typically (but not always) strike adolescents, often after a period of very rapid growth. There is a female to male ratio of 5 to 1. Some patients report a sudden development of symptoms after a viral illness, immunization or trauma. . Others may see a more gradual onset. Although very rare, there are children born with life threatening non-familial forms of dysautonomia. There is also a distinctive form of dysautonomia called Familial Dysautonomia (FD) that has been identified in individuals of Ashkenazi Jewish extraction.

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The afflicted child may visually appear to be as healthy as those around him. The manifestations are occurring internally, and although the symptoms are verified medically they are often not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity. Often patients will become more symptomatic after a stressor or physical activity. Patients may find themselves involuntarily limiting their life-style activities in order to compensate for the conditions.

 

[NelliePledge]

I don’t know from personal experience what issues teenagers have.
Could be a few different reasons why adolescents don’t get picked up especially if ME isn’t severely affecting them.
Poor school attendance could be put down to truancy rather than ill health.
Not all kids have supportive parents who will be concerned if they’re spending a lot of time in their room.
Parents can be caught up in working long hours either with demanding high powered jobs or possibly having to do more than one job to get by and in practice don’t engage much with the kid.
Could be the teenager gets involved with alcohol or cannabis abuse which could mask ME symptoms.
Then there’s kids who are in the care system who can be failed as well.

 

[Forbin]

The authors suggested the changes with age could be due to the hormonal and psychological changes of adolescence. It could, they say, also be due to children being exposed to more environmental and biological factors as they get older.

Another reason why the numbers go up up with age might be that, in the US at least, children up to age 11 or 12, though they may attend schools with hundreds of other students, generally have little interaction with anyone outside of their classroom of 20~30 students. Once they hit middle school, however, where they move from classroom to classroom depending on the course, they pretty much are in direct or indirect contact with everyone else in the school.

For example, you might move from an English class to a Math class and find yourself now sitting next to someone coming down with an infection - or you might be sitting at a desk which was occupied just minutes before by someone who was ill enough to be contagious.

 

[Dolphin]

Was dysautomomia ruled out in the study?

Dysautonomia (my bolding).

Childhood dysautonomia conditions typically (but not always) strike adolescents, often after a period of very rapid growth. There is a female to male ratio of 5 to 1. Some patients report a sudden development of symptoms after a viral illness, immunization or trauma. . Others may see a more gradual onset. Although very rare, there are children born with life threatening non-familial forms of dysautonomia. There is also a distinctive form of dysautonomia called Familial Dysautonomia (FD) that has been identified in individuals of Ashkenazi Jewish extraction.

The symptoms of dysautonomia conditions are usually “invisible” to the untrained eye. The afflicted child may visually appear to be as healthy as those around him. The manifestations are occurring internally, and although the symptoms are verified medically they are often not visible on the outside. Symptoms can be unpredictable, may come and go, appear in any combination, and may vary in severity. Often patients will become more symptomatic after a stressor or physical activity. Patients may find themselves involuntarily limiting their life-style activities in order to compensate for the conditions.

Why would it be ruled out? I don't believe it's a strict exclusion and indeed different forms of dysautonomia seem to be common in the condition

 

[Mij]

It is fairly common in ME, but were they able to distinguish it from ME?

 

[adambeyoncelowe]

At the beginning, I didn't have a CFS diagnosis either and even when I got one, it was quite uncertain if this was the correct diagnosis. So I don't think this is about diagnostic labels. It could be that the school staff mistake ME/CFS for a mood disorder, but they might have just as well thought the same about me. Nonetheless, they seemed to think that what happened to me was strange and they didn't give examples of other patients experiencing something similar.

I don't think this has much to do with recognizing PEM or not. At the school, they could have known about other patients struggling to following classes because they were constantly exhausted or feeling ill and where doctors couldn't really figure out what's wrong. You don't have to know anything about PEM, ME or CFS to pick that up.

I remember that a few teachers came to visit me after I had to drop out of school. They talked about my illness with me and my parents and it was basically us explaining that we heard about other cases through doctors or friends who heard about someone in a similar situation. The teachers didn't know which would be something quite bizarre if approximately 13 students at the school were suffering from this illness at any point in time. I assume that teachers would have heard about a similar story from one of their colleagues for example.

Anyway, so far my personal anecdote. The reason for going into this is that the school environment is, I think, an adequate tool to get an intuitive idea of prevalences. You pretty much have a representative sample of the population that is constantly being monitored. I hope others make the same thought experiment, to see if they would come to the same conclusion. My guess is that with a prevalence of around 1% a devastating illness such as ME/CFS would have been picked up, even if school staff don't know how to name it.

Not necessarily...?

a) We don't know how common your experience is.
b) Those kids might not have even made it to school in the first place to be noticed.
c) Teachers who haven't got a clue might assume any number of reasons why kids are absent without putting two and two together.

At my school, some kids were just always truant/absent/sick, and no one knew or cared why. It's very likely, now I look back on it, that at least some of them had ME.

 

[Trish]

I wondered about the numbers in schools, both from my days as a teacher and as a pupil.

As a pupil I would not have expected to know about other pupils' health or absences apart from the ones in my own class. Sure there were rumours about occasional serious illnesses, and in my own class of 35 girls I knew pretty well if someone was absent a lot or had a serious illness, but confidentiality would mean teachers would not tell us about other pupils' in the school with health problems. And way back in the 1950's and 60's when I was at school, they would probably have been described as a frail or sickly child, rather than having a named illness.

As a schoolteacher, I was aware of several children who had a very long slow recovery period from things like glandular fever, or who were absent a lot with infections. Some of those may have had ME. Later as a College lecturer (age 16 plus) again there were the glandular fever cases and students who disappeared without me knowing why if they weren't in my tutor group. As it was post school leaving age, they tended to just disappear and be assumed to have dropped out.

When my daughter got ME at 16 while still at school, before she was diagnosed, I tried to get her timetable reduced in the early stages, but was refused. Again, she was past school leaving age, so was allowed to just drop out with very little follow up.