Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

[Dolphin]

https://bmjpaedsopen.bmj.com/content/8/Suppl_5/A47.1.abstract

Royston A, Rai M, Brigden A, et al. OP-103 Severe ME/CFS in children: a British paediatric surveillance unit study BMJ Paediatrics Open 2024;8:doi: 10.1136/bmjpo-2024-EPAC.102

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Oral Presentation

OP-103 Severe ME/CFS in children: a British paediatric surveillance unit study
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1. Alexander Royston1,
2. Manmita Rai2,
3. Amberly Brigden3,
4. Sarah Burge1,
5. Terry Segal4,
6. Ilaria Idini5,
7. Katharine Pike1,
8. Esther Crawley1

Abstract
Aim

Severe myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a poorly understood condition which significantly impacts education, development and quality of life in children and young people. We conducted a population-wide surveillance study to determine the prevalence and incidence rate of severe ME/CFS in children aged 5–16 years over 13 months. We aimed to describe the demographic features, symptoms, impact on activities of daily living, school attendance and time to diagnosis, along with exploring the screening investigations, referral pathways and management of cases of paediatric severe ME/CFS.

Material and Method

Prospective surveillance study conducted by the British Paediatric Surveillance Unit. Paediatricians across UK and Ireland were asked if they had assessed a child with severe ME/CFS (screening definition was given, applying National Institute for Health and Care Excellence (NICE)-recommended criteria to assess severity of ME/CFS). Questionnaires describing demographics, symptoms, function and treatment were completed.

Results

285 cases were reported, of which 33 were confirmed severe, 4 probable severe and 55 possible severe (figure 1). Prevalence was 3.2 per million children (95% CI 2.2 to 4.5). Including possible/probable severe ME/CFS gave 8.9 per million children (95% CI 7.2 to 11). For 16 possible cases incomplete investigation to exclude alternative diagnoses prevented confirmation of a severe diagnosis. Only 64% of confirmed severe ME/CFS cases had been referred to specialist services. The management provided varied considerably between patients and four received nothing at all. The commonest management approaches were medication (67%), activity management and physiotherapy (61%).

Conclusions

Although the prevalence of children with severe ME/CFS was low, all were very disabled. In addition, the majority receive little or no education. Full investigation is frequently incomplete and recommendations for referral and management are poorly implemented. The needs of housebound children are very likely be poorly met. Paediatricians need to consider how to provide rehabilitation and education for these disabled young people.

https://twitter.com/user/status/1812844016016244890

 

[Sean]

Paediatricians need to consider how to provide rehabilitation and education for these disabled young people.

What rehabilitation? Hence, how is education going to take place?

They still think it is just a management problem, and they know how to teach us to manage it.

 

[Amw66]

When severe is classed as still being able to attend school ( 1 hour / week) , the definition itself is problematic .

I'm assuming this educational parameter is " in person" and not online, as access to online provision still seems patchy at best.

 

[bobbler]

So, this is a study of care providers using a now defunct guideline who show no useful knowledge of ME, severe or otherwise.

So this is by definition only patients who are under someone's care, which is a minority, and they are overseen using a harmful care model that was deprecated between the time they started the study and publication. It's not accurate to say that 2/3 severe patients are under specialist management, it's only 2/3 who were seen using this clinical pathway by this group. From people who overuse statistics this much, they don't seem to understand that accurate denominators are important when calculating percentages.

CBT was deprecated. GET is contraindicated. No drug is approved or recommended under either NICE guidelines.

Somehow the lead investigator of the study is one of the main actors responsible for this disaster, and even they can't spin this in a positive way. But she'll get more funding regardless, once again presenting a new approach that is the same as the old approach.

This is a level above being a study of failure, it's a study of people who fail so miserably they don't even realize they are failing. It's failure studying itself, and failing to see that it is failing. Remarkable, in all the worst possible ways.

I think* on the drug front that melatonin might have been for cyp?