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

http://www.sleep-journal.com/article/S1389-9457(18)30017-0/fulltext?cc=y=

Simon M. Collin, Tom Norris, Paul Gringras, Peter S. Blair, Kate Tilling, Esther Crawley

Abstract
Objective
/Background: Sleep abnormalities are characteristic of chronic fatigue syndrome (CFS, also known as ‘ME’), but it is not known whether sleep might be a causal risk factor for CFS/ME.

Patients/Methods
We analysed data from the Avon Longitudinal Study of Parents and Children (ALSPAC) birth cohort. We describe sleep patterns from age 6 months to 11 years in children who were subsequently classified as having (or not having) ‘chronic disabling fatigue’ (CDF, a proxy for CFS/ME) between ages 13-18 years, and investigate associations of sleep duration at age 9 with CDF at age 13, and sleep duration at age 11 with CDF at age 16 years.

Results
Children who had CDF during adolescence had shorter nighttime sleep duration from age 6 months to age 11 years, and there was strong evidence that difficulties in going to sleep were more common in children who subsequently developed CDF. The odds of CDF at age 13 were 39% lower (odds ratio (OR) = 0.61, 95% CI 0.43, 0.88) for each additional hour of nighttime sleep at age 9 years, and the odds of CDF at age 16 were 51% lower (OR = 0.49, 95% CI 0.34, 0.70) for each additional hour of nighttime sleep at age 11. Mean nighttime sleep duration at age 9 was 13.9 (95% CI 3.75, 24.0) minutes shorter among children who developed CDF at age 13, and sleep duration at age 11 was 18.7 (95% CI 9.08, 28.4) minutes shorter among children who developed CDF at age 16 (compared with children who did not develop CDF at 13 and 16, respectively).

Conclusions
Children who develop chronic disabling fatigue in adolescence have shorter nighttime sleep duration throughout early childhood, suggesting that sleep abnormalities may have a causal role in CFS/ME or that sleep abnormalities and CFS/ME are related to a common pathophysiological cause.

Full text at link.

(Yes, the usual mob, but they seem to be accepting the possibility of a physical cause)

 

Even if this study was done on properly defined children (unlikely in this context, but too weak to read the whole shebang to find out) it's just so banal. Like we didn't already know this stuff decades ago.

EDIT: ie that sleep is affected in ME. I think most most people with ME know the route of transmission, that it's a consequence of the disease and not a cause... which might be something the PIs of this pathetic study might wish to take to heart so they don't have to waste any more money on more futile projects.

 

So the problem stems from not sleeping enough when younger???



R i i i i i ght.

 

So reduced nighttime sleep duration in the preceding years predicted development of chronic disabling fatigue, but Crawley and colleagues recommend that once these kids have chronic disabling fatigue, their sleep should be reduced in order for them to recover their health. Seems unlikely, no?

If the reported link between reduced sleep duration and developing chronic disabling fatigue were replicated in a cohort of non-depressed, non-anxious kids with ME/CFS, and then the same association were to be replicated in adults, then we might predict that reducing the sleep of kids with ME/CFS would make them more likely to relapse as adults.

Sleep advice for children with "CFS/ME" from Brigden et al incl. Crawley's 2017 review:

"The most important strategies
are to reduce excessive sleeping as this will improve sleep
architecture. Clinicians should agree the maximum number of
hours the young person will sleep and then set a wake-up time.
The going to sleep time can be calculated by subtracting the
maximum time from this."

Compare to sleep advice for children with ME/CFS from Rowe et al's 2017 paediatric primer:

"Conventional sleep hygiene measures for insomnia in otherwise
healthy people can be ineffective in young people with ME/
CFS, but the following measures can be helpful:
• Balance daytime activity with rest (pacing of activity), to avoid
post-exertional symptom exacerbation, which can interfere
with sleep (see Fatigue, Post-Exertional Symptoms, Exercise
Intolerance).
• Eliminate caffeine-containing beverages in the late afternoon
and evening.
• Avoid television, computers, and electronic devices before
and after bedtime, (light from electronic devices can aggravate
insomnia and fatigue).
• A carbohydrate snack at bedtime might be helpful (96).
If insomnia or sleep reversal is profound, sleep medications,
can be started at a low-dose. The risk of adverse effects needs to
be balanced with the gains from a better night’s sleep and sleeping
the same hours as other family members. The medications
chosen should be safe for long-term use and should be taken early
enough to be effective at bed time. Non-pharmacological remedies
can include herbal teas, such as Chamomile. Commonly
used medications are listed in Table 7. For more severe problems,
Zolpidem and trazodone can be used with caution. Controlling
pain (see Pain) will often help sleep." https://www.frontiersin.org/articles/10.3389/fped.2017.00121/full

And let's hear from a kid/adolescent themselves:

http://www.tymestrust.org/pdfs/ttbannedfromsleeping.pdf

 

Some bits I found interesting:

• CDF is based on parental report at 13yo, parental/child report at 16yo and at child report at 18yo and...

• That's a pretty gigantic red flag IMHO. Taking the stats above, very few of the CDF patients can be demonstrated to not have their fatigue caused by a depressive disorder (if I'm reading it right). Given that today ME/CFS is still really a diagnosis of exclusion, one cannot use this data if one hasn't, y'know, actually excluded other explanations for the fatigue.

• The authors do at least pay lip services to there being a possible physical explanation for the correlation (albeit that the red flag above calls the whole correlation - at least as it applies to ME/CFS - into question):

• ...but also give a psychological reason based on sleep preference... (emphasis mine)

• ...and, as noted above, if you don't exclude depressive disorder from your study group then, yes, you might be able to explain the association due to depression! That tells you diddly-squat about ME/CFS though.

Overall, it's a shame. This methodology coupled with a proper selection of ME/CFS patients - rather than using a group of patients with less well defined fatigue symptoms and from which you've not excluded cases of depressive disorder - could actually yield some interesting data. As it is, with the UK/BPS approach of blurring ME/CFS and general fatigue, it gives us very little.

 

Chronic Disabling Fatigue was defined differently depending on what age the child was. I've separated this into chunks for easier reading, but the remainder of this post is a direct quote from the paper being discussed in this thread:

"Children were classified as having CDF (of >6 months’ duration) based on information provided by parents at age 13 years [12, by parents and children at age 16 years [13, and by children at age 18 years [14.

CDF at ages 13 and 16 was defined as fatigue (feeling tired or lacking in energy) of >6 months’ duration that was associated with absence from full-time school or that had prevented the child from taking part in activities ‘quite a lot’ or ‘a great deal’, excluding fatigue possibly related to sport, snoring and other illnesses [12.

At age 16, children could only be classified as having CDF if they scored ≥19 (out of 33) on the Chalder Fatigue scale [[16], [17]].

At age 18, teenagers completed the Revised Clinical Interview Schedule (CIS-R) [18, and were classified as having CDF if they had been getting tired or had been lacking in energy during the past month and then responded ‘yes’ to >2 of the following 4 items:

1) felt tired or lacking in energy for 4 days or more in the past 7 days;
2) felt tired or lacking in energy for more than 3 hours in total on any day in the past 7 days;
3) felt so tired or lacking in energy that they had to push themselves to get things done on one or more occasion in the past 7 days; and
4) felt tired or lacking in energy when doing things they enjoy in the past 7 days.

Teenagers were not classified as having CDF if the tiredness or lack of energy had lasted for <6 months, or was caused by exercise or medication, or if the teenager felt better after resting or did not feel exhausted the day after exercising. Children who met CDF criteria at age 16 or 18 years but who were reported by parents to have had problems with alcohol or drugs (crack, solvents, heroin, or cocaine) or a diagnosis of anorexia nervosa were classified as not having CDF.

Our definitions of CDF at each age did not exclude children who had co-morbid depressive symptoms. Approximately 30% of children with CFS/ME in specialist services have comorbid depression, and it is unclear whether co-morbid depressive symptoms are a predictor of, or secondary to CFS/ME [19. Therefore, we think it would be unreasonable to reclassify or exclude all children with CDF and comorbid depression, and this would also substantially reduce the study power (halving the prevalence of CDF at some age points)"

 

Is there any research group in UK actually capable of both diagnosing and carrying out research on children/ adolescents with ME?

Extrapolating any of this gobbledegook is dangerous.

More ominous is the new category of CDF which by claiming proxy status ( which it cannot be according to illness definition) will hoover up the little research money there is .....

 

No you see, they are telling us that 'sleep' might be a causal risk factor for 'cfs/me'

I can confidently tell them that every person diagnosed with 'cfs/me' did at some point 'sleep'. If in fact it was not the case, the person would have died.

I shall soon be publishing my landmark paper showing that 'drinking water' is a causal risk factor for serial killing. It's a 100% accurate predictor too.

 

No, EC and the rest of the BPS crowd have ruled the medical narrative for so long and so pervasively, that there is no research money for anything else. So mainly, only charity raised research funds can be used for research into the biomedical science relating to ME.

One interesting exception is Prof Julia Newton in Newcastle. Her distance from London, Oxford and Bath probably helps. It seems that her research into ME started alongside research money for PBC (Primary Biliary Cirrhosis). This an autoimmune disease, which has fatigue as a major symptom. She runs a fatigue clinic, where she also diagnoses many people with POTS!
It seems she gets a fair amount of stick at some fatigue study days, where she concentrates on the physiology/biochemistry of fatigue, but many others attending have a psych background.

Dr Bansal did manage to publish a paper on different subsets of B cells in ME a few years back. Not sure how this was funded.
He is retiring later this year, which is a huge shame for the ME community. However I can't blame him, as for a long time he has been one of a handful of Consultants who accept that ME does not have a psychogenic origin.
Bashing your head against the BPS wall can only be continued for a limited time, without long-term heath consequences.

 

At what point does the emporer discover that there are no clothes?

 

When he gets a nasty sunburn from being exposed to direct sunlight?

 

Language is a funny thing, isn't it?

"Chronic disabling fatigue" must be so much worse than mere "chronic fatigue".

Oh, I see. They call it that because "children in our study were not examined by a physician". That explains it.

One can even see some potential virtue in these findings. Let them explain how these findings relate to ME in adult patients with sudden post infectious onset, who suffered no sleep problems prior to the onset.

 

Title: "Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort"

How the fuck do they get to study Not-CFS and declare it a proxy for ME/CFS? Seriously, who lets people get away with casually declaring something which doesn't meet even the broadest criteria for a disease is the same as that diseases? And even put ME/CFS in the title?!?

 

@Valentijn this is not the first paper to adopt this " definition". There may be a relabelling and repositioning going on.

I struggle as to how these kind of papers get published.
Perhaps we need an analogy with another chronic illness ( replace CDF with something else) to illustrate the farce that this is.

 

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.

 

Just some thoughts from a random stranger. PoTS (Postural Tachycardia Syndrome) can look and feel a lot like anxiety, and I've often wondered if an explanation for perfectionism, depending on how it manifests, could be an attempt to limit energy expenditure - do something right first time means you don't have to expend any more energy on whatever you are attempting. Personally I would say that both of these things have applied/do apply to me, but I have neither medical training or medical confirmation.

 

Sadly there are a very high percentage of 'scientific' papers published that are rubbish. A few people claim to be trying to weed them out.