The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample (2020) Jason et al.

The team of Leonard Jason have performed a prevalence study in Chicago on children and adolescents with ME/CFS.

Because this was a community-based study with clinician confirmed diagnosis, this is probably one of the best studies on the prevalence of pediatric ME/CFS thus far.

https://link.springer.com/article/10.1007/s10566-019-09543-3

 

https://twitter.com/user/status/1220403181395509254

 

Press release:
https://resources.depaul.edu/newsroom/news/press-releases/Pages/mecfs_Jason2020.aspx

To facilitate sharing:
https://twitter.com/user/status/1220402655266320384

 

Some notes:

1) One big, very big, problem with this study is that the researchers could only screen 5622 households of the 147,954 phone numbers they tried to contact. The authors note that "Using telephones is becoming an increasingly difficult method to recruit subjects." We can only hope that those 5622 household form a representative sample of the whole but it is likely that there was some selection bias. Households who know somebody with significant fatigue might be more inclined to respond and participate, which is why I think the calculated prevalence rate (750.000 per 100.000) is inflated as it didn't take into account the poor response rate.

2) The paper sometimes gives the impression that patients had to meet all three case definitions in order to receive a ME/CFS diagnosis, but table 4 shows that only 83.3% of diagnosed patients met at least one symptom of the post-exertional malaise. That suggests that meeting the Fukuda-criteria alone was enough, or that the diagnosis was ultimately based on the clinician's judgement because otherwise, we would expect this figure to be 100%.

3) Like other community-based prevalence studies, questionnaires were used to screen participants before proceeding to a clinical examination by a physician in stage 2. Children and adolescents with no exclusionary medical conditions, who screened positive for either significant fatigue or school/learning/memory problems, had substantial reductions in functioning, and three or more ME/CFS Fukuda et al. (1994), IOM (2015), or Carruthers et al. (2003) symptoms were considered screen-positive and selected for full evaluation in Stages 2. Although the screening seems to be quite thorough only 42/165 or 25% of those examined at subsequent stages were found to have a diagnosis of ME/CFS. Like other prevalence studies this highlights the importance of a clinical examination in making the diagnosis of ME/CFS.

4) Only 2 (5%) out of the 42 ME/CFS patients identified in this study already had a diagnosis of ME/CFS. So the vast majority is undiagnosed, which in all honesty is something I find difficult to comprehend.

 

Re point 2, the study has been 10 years in the making. The IOM definition came out 5 years ago. The study operationalized PEM in a more sensible manner than in one of his earlier studies which is good.

These kinds of studies are never going to be highly accurate without a very reliable objective biomarker. In the meantime, it's a good study for what is possible to do now.

I also think I have some idea of how going undiagnosed works.

 

https://twitter.com/user/status/1220412882178969601

 

I find it perplexing because I would assume that when people have ME/CFS and can no longer function, that they search for doctors, books and online resources to try to figure out what's wrong. I would think that somewhere along that quest they would stumble upon ME/CFS as a likely diagnosis.

Don' get me wrong can see how it could go wrong for a lot of people (for example not having the financial resources to see a lot of doctors), in not getting the right diagnosis, but 95% that's hard for me to comprehend.

I would be interesting to see the cases of those patients who remained undiagnosed: how were they doing, they did have an alternative diagnosis or did they simply tried to ignore their symptoms etc.

 

I suspect that because its children, many would rely on their parents to do the research etc.

And unless they can discern the exertion = sickness a day or 2 later, it can be tough to figure out - or for a physician to pick up on (ignoring the over-psychsomatization of illnesses generally, especially those that are not readily diagnosable).

 

Me too, I became ill at 17 but wasn't diagnosed until many years later. It didn't help that I'm autistic, and hadn't learned to talk with doctors very well (I lacked 'theory of mind' until well into my late 20s).

I'm a renter living on benefits, but it's not the reason I stopped using a landline phone about 12 years ago. It's because there were so many spam calls, often waking me when I was resting, that it just got too bloody irritating. It happens very rarely on my mobile, whereas I'd get up to 10 a day on the landline.

I know very few people who still use one, for much the same reason. Some friends still technically have one as part of their telecoms package, they just don't connect a handset to it unless their mobile service is down. I still have mine, but it's got my disabled alarm system on it. The spammers can dial that up as often as they bloody like!

 

I'm surprised it's as high as 83%. It was only several years after onset that I first noticed PEM - by which I mean feeling oddly worse the day after exertion. It took me a long time to make that connection because it's so non-intuitive. I was only able to distinguish PEM after my background level of constant flu-like malaise decreased after several years of the illness, making it easier to distinguish the ~24-hour delayed PEM from the background "malaise." I was also able to exert myself more at that point, thus being more likely to induce PEM (I suppose).

I thought it was so strange that I was sure a doctor would dismiss it as "imagination," so I never mentioned it (except to a friend). I didn't find out it had a name until almost three decades later.

 

I agree the idea of delayed PEM is counter intuitive, especially in a variable condition.

It was not until I tried recording my activity and producing graphs that I began to understand delayed responses over several days. I probably did not get my head around the various factors that restrict my subsequent activity till I read about concepts like PEM and orthostatic intolerance.

 

OT but thank you - I had no idea it had a name.

 

Me too, until I was finally diagnosed in my 50s!

 

If I can use myself as an example that is probably typical, after first being told by my GP this could be worth looking into, the name itself made it clear to me this was irrelevant and looking into the common portrayal of chronic fatigue syndrome (I didn't even see the name ME until years after) made it clear this had nothing to do with what I was experiencing because calling this entire thing "fatigue" is a complete misnomer that basically misses 90% of the illness. It takes all of 2 seconds to dismiss it and keep going down the list of options.

I figure this is a common experience. You look around and find this thing called fatigue and it describes almost nothing that is happening to you and recommend behavioral therapy and that seals the deal that this is not it at all and not even worth reading any further.

Which I expect to be the entire point of having reframed it under this ridiculous and incompetent definition. It's nothing like what is actually happening and most people will just skip over it and find nothing else to explain their illness.

 

i have met people on mobility scooters, asking me what i got and telling me their doctor never diagnosed them with anything but got sick from viral illness. (Not that i would diagnose them or anything)

i think some astute thinking physicians are worried about labelling their patients (adult and youth) with a disease which will leave them stigmatized forever. This may be even more difficult with children, and i bet that many physicians do not even think it is possible for children to have ME.

Other physicians simply do not believe in it and will adopt a ‘wait and see’ approach.

 

You get it early enough and have a bad enough experience with trying to explain how bad you feel to authority figures who dismiss it as unimportant, it's then possible to accept it as the new normal for you and attempt to carry on in life. Not everybody who gets it as a child is bedridden, those who will be on the mild end of things will find it hard to convince people that they are actually sick.

My experience, my ME started at age 9 and I finally got a diagnosis in my mid 30s when I could no longer force myself through a full working day, 5 days a week.

 

Maybe they have repeated negative encounters with healthcare professionals and eventually just give up. A negative encounter can just be a doctor assuming that it's stress related and trying to reassure the patient that everything is fine.

Or the problem is right from the beginning seen as behavioural problem ("my child does not want to go to school. how can I make them go to school?"). Any further deterioration is then likely viewed as worsening of behaviour rather than a hint hat maybe there is an illness. A lot of people also don't have medical training and don't know what they don't know, that is they might have a mental picture of what "real chronic illness" looks like which is inconsistent with how it actually can be.

Children themselves do not have financial resources to do anything independently. They may not have developed the ability to stand up for themselves when necessary.

A depression diagnosis can also easily obscure an underlying ME/CFS and that way the diagnosis can be delayed by many years.

It might never occur to patients that the problem is a dysfunctional medical system, leading to patients never making a serious attempt to find out what they actually have.

 

If this can be extrapolated to adults, we'd have 500,000 sick people with ME in the UK!