Clock changes disturbing sleep in ME/CFS

boolybooly

boolybooly

Senior Member (Voting Rights)
Twice every year I am forced to shift my circadian rhythm an hour and it messes me up for a week every time.

I have finally written to my MP to ask her if anything can be done to stop this anachronism and took a moment to help her understand ME/CFS a bit better and why this is a particular bug bear for me.

Dear Gen Kitchen,

Please can we stop the clocks shifting backwards and forwards between GMT and BST twice a year?

The Royal Society for the Prevention of Accidents advocates keeping BST all year round. I really don't care which we keep as long as we stop needlessly changing the clocks twice a year.

In addition to the adverse consequences of the clock changes for everyone else in the UK, I am diagnosed with ME/CFS and I and many people like me are particularly sensitive to sleep disturbance due to the complex neurological affects of ME/CFS on the circadian rhythm. This means my sleep is disturbed and unrefreshing and I am constantly tired but wired and in torment of needing to sleep but being unable to get refreshing sleep, which makes me abnormally tired even before the abnormal fatigue and danger of post exertion malaise (PEM) resulting from activity. Any disturbance to my sleep cycle makes the whole problem worse and this happens twice a year for no good reason other than a national habit.

This is why I am particularly keen to remove this anachronism from our nation's time keeping as the UK did in 1968 for three years. I wish we could continue with that brief episode of common sense. Can you and parliament do anything to bring this about?

Yours sincerely, boolybooly
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Interestingly the clocks going forward seems to disrupt me much more than the clocks going back. I always joke that I end up with jet lag.

It is strange that a relatively small change (1hour) seems to have a disproportionate effect, even for those of us like me that have no fixed timetable so can ignore the change in practical terms.
 
I don't notice them so much because I stick to the old morning times, until I reach the point where I realise I've adjusted. I never know what time it is in the afternoon and evening anyway, I lose track.

I would prefer it if we could just stick to BST all year round though.
 
Same. My body and circadian rhythms get really messed up and it can take a while to recalibrate. It's not easy when trying to have the minimal contribution to family life.

It's rubbish for families with young babies too.

We don't exactly send kids and everyone to harvest the fields and therefore need more light so why keep it up?!
 
Kitty said:
I don't notice them so much because I stick to the old morning times, until I reach the point where I realise I've adjusted. I never know what time it is in the afternoon and evening anyway, I lose track.

I would prefer it if we could just stick to BST all year round though.
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I would like it if I could sleep in but my sleep timings are easily upset by any cognitive events which involve planning, like deliveries etc which also includes changing the clocks. Unfortunately everyone in the world insists on reminding me the clocks are changing.

So this morning, after I went to sleep on time for BST last night, I needed to sleep until at least 8:30am but woke at 7:00am instead (GMT 6:00am) and could not get back to sleep as is sometimes the case. Basically missed out a sleep cycle and this always affects me badly. Feel lousy.
 
I agree, I have never understood why this condition has always made me much more inflexible when it comes to time zone changes or even trying to move my own sleep time back by even just half an hour... and trying to do something either physically, mentally or emotionally taxing at an earlier time in the day than I'm usually able can mess up the rest of my day so much! Ideally one wouldn't be so unwise as to try but as others have said we still need to cater to others' timetables. I always underestimate the magnitude of the impact as it doesn't make sense! I have always been a natural night owl but not inflexible when I needed to achieve things earlier in the day.

Interestingly @Peter Trewitt, I always found it easier to travel west around the world, now if I could just continually do that on a private but fully staffed ocean liner somehow, with stops along the way, I could escape the "jet lagged" sensations I get just living in the same place but having to change the clock. :sneaky:
 
boolybooly said:
I would like it if I could sleep in but my sleep timings are easily upset by any cognitive events which involve planning, like deliveries etc
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Maybe doesn't affect me so much because my sleep times vary so wildly anyway? I try not to schedule anything before 1pm, and it's later than that when possible—I have more choice over the time of supermarket deliveries than most things, so they're always after 4pm.

If you get to sleep some time roughly between 1am and 7am, you're already on a different schedule to the rest of the world. Maybe not surprising one hour doesn't make a big difference.
 
I'm similar to you @Kitty except my sleep time fairly regularly starts ~1am and I find that extra hour in the late afternoon while you are on the same time as others makes a big difference. I mostly don't function well enough for interactions until after 3pm and most carer organizations and other departments I am reliant on close at 4pm so when that extra hour doubles my functional time available for calls and other interactions. Often the schedule setting etc staff I need to contact finish at 2pm so 4pm is actually better than that at least.

Also, my friends are larks and as a night owl I hate DLS as it reduces my functional window for calls or visits.
 
boolybooly said:
Twice every year I am forced to shift my circadian rhythm an hour and it messes me up for a week every time.

I have finally written to my MP to ask her if anything can be done to stop this anachronism and took a moment to help her understand ME/CFS a bit better and why this is a particular bug bear for me.

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From what I understand, time changes can be really awful for people with narcolepsy --- I wonder if it might be worth seeing if an org related to narcolepsy would get on board with helping...?
 
I wish I had enough grip on what time of day to the nearest hour it is to be affected.
I presume those people bothered by the time change aren't affected as the days shorten and lengthen by an hour over the few months that it happens normally.
 
Exact same here! I've been saying this to my GP for years. Any time change really messes me up. Even having to wake up a half hour earlier than normal for an appointment would make me feel like I got run over by a truck (which is saying something, considering how bad I would feel normally).

I have some pet theories about this that I've been trying to see if I can measure experimentally. Turns out that mitochondrial and cytosolic NAD/NADH ratios are directly connected to circadian rhythm regulation.
 
oldtimer said:
I presume those people bothered by the time change aren't affected as the days shorten and lengthen by an hour over the few months that it happens normally.
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Not with the normal cycle or shift no. I do have trouble in the summer, some of which is the impact of the earlier morning sun but also the warmer weather, both of which negatively effect sleep.
 
I gave myself extra work this evening adjusting the time on the two clocks in the house. A hour later I realised I had moved them both forward a hour instead of back. Down they came again and had to wind and wind them back two hours.

I can't wait for the day when everyone decides to keep one time all year.
 
AliceLily said:
I gave myself extra work this evening adjusting the time on the two clocks in the house. A hour later I realised I had moved them both forward a hour instead of back.
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Err, I'm sorry to say but ...

Clocks do go forward in Spring and back in Autumn. I always remember the mnemonic "Spring forward then Fall back". If I ever get terribly confused at clock change time I carry my phone around with me, or check the time on the TV, or I check the time on my PC, because all three change automatically when the clocks change.

Edit : I don't know where you live, so perhaps the rules are different where you are.
 
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