Childhood sleep and adolescent CFS/ME: evidence of associations in a UK birth cohort (2018) Crawley et al.

[Amw66]

FWIW my 16 year old daughter has had chronic sleep problems since she was born. We even had a year at a sleep clinic to resolve these and were signed off about 2 months before she got EBV and started showing symptoms of ME (in particular PEM). We've always felt that her chronic sleep deprivation did contribute to her ME in some way in that she was physically under a great deal of stress at the time and we think it meant that she was less physically equipped to recover from EBV. Almost like her body said "right, that's enough, now I give up!"

She also has underlying anxiety and perfectionism which makes it very hard to discuss all this with her psychologist as Emma does in many ways fit with the picture they're telling us about children with ME. I make it very clear that I don't think these things are the reason she got ME, but I do privately think they go some way to impeding her recovering. eg. anxiety means she uses up a lot more energy on certain activities than they might in someone without that anxiety. So this means that with her reduced energy levels, it makes it harder for her to include these activities in her daily life and doing so subjects her body to more stress than they should otherwise.

The thing we struggle with the most is the sleep aspect though, as she needs a strict sleep routine for her sleep disorder but that's at odds with her need to sleep with the ME. So we've stuck to the sleep routine as we observed that she was actually a lot worse if she slept outside her prescribed sleeping hours anyway, and instead she just rests during the day instead of sleeping. This seems to be working for her. We've had to do all this on our own though as the sleep clinic has no idea about ME and just stuck to the party line.

My daughter is 16 too, and shares the glandular fever onset. (we don't do serology here to know if EBV/CMV)

Sleep was not an issue pre illness although the teenage shift had an impact. Now the phase has shifted by about 5 hours and " resetting" the bodyclock does not address this - it just means less sleep is had.
Lack of sleep exacerbates symptoms significantly- it can also affect immune status.

Aetiology does have the perfectionist/ high achiever aspect perhaps best summed up by Dr Bansal. Anxiety was present pre ME ( bullying issues may have reinforced any underlying anxiety)
Interestingly we feel that there is a high functioning ASD aspect - and this does seem to be part of some adolsecent female presentation which is not picked up. From looking at issues with sulfur methylation ( from problems with metabolism of some compounds particularly noticeable after chickenpox and glandular fever) and aspbergers we seem to fit this picture- this does make things much more difficult as ASD is certainly set up for male predominance. If you have not considered this it may be worthwhile - it explains why CBT for anxiety for my daughter pre ME never had a chance. We are trying to see how we check out this hunch without CAMHS involvement.

 

[Cheshire]

 

[chicaguapa]

That's interesting @Amw66 as my daughter has always been borderline high functioning ASD too but never diagnosed (just taken into account informally). The psychologist is aware of this from our time at the sleep clinic (which is in the same child psychology unit), so I wonder how that impacts on the CBT she's getting. I'll have to ask.