Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study 2022 Crawley et a

[dave30th]

Gah ! I've reached a point where Crawley/Chalder have merged into one !

Maybe they're identical cousins, like Patty and Cathy Lane on the Patty Duke Show in the 1960s? (For those who are not older Americans like me, Patty's hair was flipped out at the bottom to show she was cool, and Cathy's hair was flipped in to show she was sophisticated.)

 

[CRG]

If patients with severe ME/CFS don't see a pediatrician but another specialist instead or if the physicians don't diagnose these patients correctly, the estimate could be off by orders of magnitude.

In respect of this particular study there may be only very limited room for direction of young people to other specialisms without first going through paediatrics. There are two substantive limitations -

Firstly to be counted in the study the young person must be effectively absent from school which implies a specific legal status (UK Law requires full attendance for specified hours) so a child not attending school at all will have the involvement of Local Education Authorities - social workers etc, who will liaise with the GP and provide a bureaucratic impetus for involvement of paediatricians in the case.* Secondly the NHS is heavily stratified between adult and paediatric care and it would be rare for a GP to refer a person under the age of 16 to a Specialist service where there was lack of clarity about the diagnosis - and in the case of ME/CFS the few specialist services that there are, either see adults only or have a separate paediatric service for younger patients.

The combination of the involvement of schools and education professionals in cases of long term absence plus the extensive paediatric provision in the NHS means that the services the authors surveyed are likely to capture a high proportion of young people who have an ME/CFS diagnosis and who are permanently absent from school.

*This situation is not always welcome by parents who can face undue pressure re: return to school and/or bureaucratic psychologisation of their child's illness.

Clearly this is just a single study and it doesn't tell us about alternative diagnoses but the Education data sets limits to the significance of this, basically there's a limited number of young people permanently out of school for reasons of illness and it's hard to see where many more young PwME would fit in.

 

[bobbler]

In respect of this particular study there may be only very limited room for direction of young people to other specialisms without first going through paediatrics. There are two substantive limitations -

Firstly to be counted in the study the young person must be effectively absent from school which implies a specific legal status (UK Law requires full attendance for specified hours) so a child not attending school at all will have the involvement of Local Education Authorities - social workers etc, who will liaise with the GP and provide a bureaucratic impetus for involvement of paediatricians in the case.* Secondly the NHS is heavily stratified between adult and paediatric care and it would be rare for a GP to refer a person under the age of 16 to a Specialist service where there was lack of clarity about the diagnosis - and in the case of ME/CFS the few specialist services that there are, either see adults only or have a separate paediatric service for younger patients.

The combination of the involvement of schools and education professionals in cases of long term absence plus the extensive paediatric provision in the NHS means that the services the authors surveyed are likely to capture a high proportion of young people who have an ME/CFS diagnosis and who are permanently absent from school.

*This situation is not always welcome by parents who can face undue pressure re: return to school and/or bureaucratic psychologisation of their child's illness.

Clearly this is just a single study and it doesn't tell us about alternative diagnoses but the Education data sets limits to the significance of this, basically there's a limited number of young people permanently out of school for reasons of illness and it's hard to see where many more young PwME would fit in.

The one intriguing area to clarify is if 'alternative diagnoses' are being given to those with severe ME/CFS such as pervasive refusal/other psych etc. and now of course we can potentially list things like FND I guess.

Also if there is a tendency for pediatrics to refer to certain specialisms over others e.g. neuro vs rheumatology vs psych or whatever what likelihood does that have of meaning those with the most severe cases end up under something else - and has that changed over time as certain trends have waxed and waned?

 

[rvallee]

i don't understand the Item 1/Item 2 thing. If they have clinical diagnoses of ME/CFS, should meet the three Item 2 criteria. It doesn't make a lot of sense.

I didn't quite catch that, but they basically made up their own ad hoc definition, one that is obviously weird and inappropriate. Even though there are better definitions, which they reject because they are not accepted by... them.

Seems like something especially problematic in the course of a surveillance study. Maybe this is the clinic's criteria, but it still makes no sense that they would have their own private version of this.

Then again this is Crawley. If they didn't do this stuff it wouldn't have that special something they bring to everything they do.