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

Before I forget:

In the context of the CCI-discussion, Jonathan Edwards said he has been getting opinions from professionals in various specialities who are deeply involved in ME/CFS care - rheumatologists, paediatricians, neurologists etc. Apparently there was a complete consensus that (my bolding): "ME/CFS is a well established syndrome with a prevalence of about 0.2-0.4%, higher in adolescence where the illness may be relatively short lived."

Source: https://www.s4me.info/threads/conce...ty-surgery-in-me-cfs.9638/page-64#post-234812

That would support the findings of the recent study by Jason et al. (and be contrary to the point I was trying to make based on personal experience).

 

My son became ill with acute onset, following whooping cough and then a series of viruses, in early 1999. His comprehensive school had around 1000 pupils (aged from 12 to 17+) on the school roll. I was told that year by the LEA home tutor, that one other child at my son's school currently had a diagnosis of ME, was also unable to attend school at all and also in receipt of LEA funded home tuition - so that was 2 per 1000 with a dx of ME on home tuition.

One of the senior staff recalled that a couple of pupils who were the children of a school governor had also been diagnosed with ME a few years prior to my son. But she didn't seem to be aware of too many other cases within the school - at least not pupils who were too ill to attend any lessons.

I recall reading an account of a comprehensive school in the Norfolk area that had had a cluster of around 7 or 8 pupils all with a diagnosis of ME; at the time, this was considered an usually large cluster within one school.

But around 8 per 1000 across all 12 to 17+ year old school pupils sounds a little high. But I've not read the paper yet and perhaps this includes pupils who were able to attend for most lessons or had periodically patchy attendance but were not so affected that they required one to one home tutoring.

 

No EWOs (Education Welfare Officers) chasing up frequent non attenders, then?

 

Good points, Forbin. And teachers are also exposed to hundreds of children in a day. I've come across a lot of teachers with ME - former nurses, too.

Here in the UK, primary schools still hold morning assemblies where the entire school plus teaching staff are all huddled together in one room.

 

Quite high. 2 to 4% rings a bell. But this would need checking.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3244656/?report=reader

Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics
Esther M Crawley, Alan M Emond, and Jonathan A C Sterne

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Not sure if this is the paper.

 

Potentially, but the EWOs aren't teachers or students, so it doesn't necessarily follow that kids and teachers would always be aware of kids with ME.

I can fully imagine people in understaffed, overcrowded schools quite easily ignoring/forgetting/overlooking the kids who never turn up.

 

out of 140+ identified as having missed too much school for unexplained reasons, she diagnosed 20+ as having the illness. That's from memory--I haven't double-checked.

 

Remission should be used in situations like this, given they might become ill again.

Taking these figures at face value, they show that recovery is quite common in children, though it depends how it was defined.

 

From the PDF of the paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3244656/pdf/bmjopen-2011-000252.pdf

"In school-based clinics, 28 of the 2855 (0.98%) children aged 11-16 years were missing ≥ 20% of school and were diagnosed as having CFS/ME. Of these, only 3 of 28 (10.7%) had received a diagnosis and accessed specialist treatment. The duration of symptoms in those identified through clinics was comparable to those referred to via health services, but they were not as severely affected. Outcomes following treatment were encouraging."

Key messages

- 1.0% of enrolled children missed ≥ 20% of school because of CFS/ME.
- Fewer than one in five children with CFS/ME had received a diagnosis and been offered treatment.
- Children with CFS/ME who were detected through school-based clinics were less severely affected than children referred via health services and appeared to do well once treated.

Strengths and limitations of this study

- Children were offered assessment regardless of how their absence had been classified.
- All children given a diagnosis of CFS/ME were screened for other medical and emotional causes of fatigue and were prospectively characterised and followed up.
- School clinics were conducted in three schools in the south west, which has a well-established specialist CFS/ME service.

Results may not be generalisable to regions without a CFS/ME service or to regions with different socioeconomic factors that impact on school attendance.

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I still have a memory of Crawley claiming 2% prevalence in a study conducted locally to her area (possibly before the pilot SMILE Trial). But I'll have to search for this.

 

A 2018 Crawley paper:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5919160/

Crawley E. (2018). Pediatric chronic fatigue syndrome: current perspectives. Pediatric health, medicine and therapeutics, 9, 27–33. doi:10.2147/PHMT.S126253



"The prevalence of CFS in children and adolescents is between 0.11% and 4%.14–19"

(...)

"Incidence

"There is little known about the incidence of pediatric CFS/ME. The estimated incidence of pediatrician-diagnosed CFS/ME in the Netherlands is 0.01%17 but this is likely to be lower than the true incidence as not all children with CFS get a diagnosis.19 In the UK, an incidence of 0.36% in a 4–6 month window has been reported but the number of cases was low (4/1096)23 and therefore, the true incidence of CFS/ME remains uncertain."

 

Prevalence: Jason versus Crawley

I have gone through the Esther Crawley paper and its findings are very much in line with the Lenny Jason one, showing relatively high rates of ME/CFS in young people. The finding that the cases from this surveillance study were less severely affected than those diagnosed normally in the clinic also supports the discussion on this thread about this approach picking up milder cases.

However, there are some significant differences between the studies that probably has a bearing on the prevalence rates they calculated.

The Jason study takes the normal approach of assuming that people lost along the way (did not attend et cetera) are the same as those who did and calculating prevalence accordingly. The Crawley study completely ignores them, effectively assuming there were zero cases (and they lost up to 1/3 of relevant people along the way). Recalculating the prevalence from the Crawley study on the same basis that as the Jason one gives a prevalence of 1.4% versus 0.75% in Jason.

On the other hand, the Crawley study diagnosed using the NICE criteria, which are considerably looser than those used by Jason, which will lead to higher prevalence study.

Interestingly, of the people assessed in the clinic, and the Crawley study 55% (23/42) were diagnosed as having ME/CFS, compared with 25% (42/165) for the Jason study. This supports the idea of Jason using stricter criteria, though the two figures are not directly comparable because the studies use different screening criteria.

Allowing for the looser diagnostic criteria in the Crawley study, its 1.4% prevalence figure is probably pretty similar to the 0.75% found by Jason.

Crawley study: school cases versus specialist service cases

People diagnosed in the school surveillance studies were considerably less disabled than those in the clinic (and both appear to be less disabled than for adult studies I've seen).

SF 36 physical function score: school 77.5; clinic 49
(the study actually used a 10-30 scale for SF 36, I have converted to the more normal 0-100 scale)
Chalder fatigue score: school 20/33; clinic 24.4
School attendance: School 66%; clinic 39%
Number of symptoms: school 6.6; clinic 8.5

 

Code:

https://twitter.com/sjmnotes/status/1229767925180977159

https://twitter.com/user/status/1229767925180977159

 

This is great and deserves as much exposure as it can get.

This study from Professor Leonard Jason et al is invaluable because through common sense epidemiology it provides an accurate narrative to help counter the confusion of preceding decades.

The hope being that if decision makers have a clear picture of what is going on they will make the right decisions and have a hard time justifying it if they don't!

 

I suspect some of the younger kids get misdiagnosed with ADHD. Everyone knows about ADHD... few are looking for ME/CFS.

As David S. Bell writes:

 

3/4 of 1% seems high, that's higher than the incidence in adults. What are the criteria, and what is the severity threshold?

From personal experience I believe there is - OK, there may be - a pre-ME warning stage, where one gets "weird" episodes of brain fog and lethargy for no reason but without the post-exercise/post activity crash which is a hallmark of ME. A way to Dx during the just-a-hint stage could perhaps head off many cases of the full wretched disaster that is M.E.

 

For comparison, a recent estimate based on medical claims data and machine learning gives a predicted prevalence of .857% in the US.

Estimating Prevalence, Demographics and Costs of ME/CFS Using Large Scale Medical Claims Data and Machine Learning
https://www.s4me.info/threads/estim...ne-learning-2018-valdez-proskauer-et-al.7279/

The recent Levine/Hanson paper abstract states that "The latest worldwide prevalence rate projects that over 65 million patients suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)". But I'm not sure where this paper gets the worldwide prevalence from.

65 million / 7.7 billion people = .84%.

Comprehensive Circulatory Metabolomics in ME/CFS Reveals Disrupted Metabolism of Acyl Lipids and Steroids: Levine, Hanson et al 2020
https://www.s4me.info/threads/compr...-and-steroids-levine-hanson-et-al-2020.13222/