'Pacing for people with M.E.' Action for ME booklet - revised and updated January 2020.

One in three is a useful result? Dear me

 

I’ve read the latest research on sleep, it’s not hard. There’s not a lot of it! But the conclusions are clear and they are if your body needs sleep, it’s telling you something that you gain nothing from ignoring it. I was not impressed when my “specialist” pursed her lips when I told her I was sleeping 8-9 hours plus naps. It’s part of the denial game. And she claimed to be a sufferer herself.

 

We have now finalised our pacing booklet, and shared it on our website.

https://www.actionforme.org.uk/news/updated-resource-pacing-for-people-with-me/

Thank you again for your feedback. If anyone would like to see our “You said, we did” summary regarding stakeholder feedback for this resource, please drop me a line at clare@actionforme.org.uk and I will share it with you.

We will share an ETA for revised drafts for our next publication updates over the next few weeks, and invite users to share their thoughts, as some of you have so kindly offered to do.

Would it be useful for us to post on the “Introduce yourself” board and use that as a “hub” for this process, or would it be better to have one thread per resource here on the Living with ME/CFS > Lifestyle Management board?

Clare
Action for M.E.

 

It would be useful to see the previous version. Is it archived online anywhere, because I just get a 404 error now?

 

Having attempted to read the booklet my first response is that there must surely be a way of offering the advice briefly and clearly. It surely doesn’t require so much explanation? I seriously doubt I could bring myself to read through all that in the hope of finding something useful.

 

At 60 pages I won't even bother. Sorry. Should be cut by 80-90%. Effective communication is about reducing the superfluous and keeping only what is necessary (and avoiding redundancy (while also not repeating yourself too much)). This isn't a nuclear reactor design, it does not need this much detail.

 

Yeah, this is a massive document @Action for M.E. .I'll try to dip in and out but.. There's no way I'm reading all of that.

I've just dipped in - page 15 - mentions avoiding sleep during the day as it might disrupt sleep at night.

For a good number of ME patients this is completely wrong. Personally, I drove myself into an awful state by avoiding sleeping when I desperately needed to during the day. As a result I was completely "wired but tired" at night and couldn't fall asleep. For me, taking that hour or two that I needed during the day meant better sleep at night. Note - although my condition was classed as moderate at this time so within the target group for this booklet.

This also refers us to page 28 the section on sleep. The information here is pretty much generic sleep advice. I note the mention of emotion preventing sleep - I wonder how much of this is "emotion" and how much is due to patients following generic advice and not sleeping during the day, thus their brain being overstimulated? I'm betting a fair few.

The summary of the Sleep.section also says quality of sleep is better than quantity of sleep..... Really? Are you taking the .....? Decent quality sleep is the Holy Grail for many ME patients, no matter what they do. Your sleep guide should help them do what they can to achieve that, not just suggest that's what they do.

By the way - the better I sleep the worse I feel and I'm sure I'm not alone in that. It's part and parcel for many ME sufferers and your handbook should be honest about that.

 

Most sleep 'advice' feels wrong in the same spirit as the recommendation to exercise to health. Same 'common sense' driven dangerous irrelevance.

Detached from the illness reality and experience of pwME who actually stabilise themselves and/or halt decline.

 

Couldn't agree more. It's such a complicated and often central part of the disease, it can't just be dealt with in a few lines of generic advice. Poor sleep advice has made people's illness much worse. I also tried to curtail my daytime sleep in the early stages and it was awful.

I know their sentiment is meant well but it has to be recognised how harmful sleep hygiene can be to people with M.E.

They didn't want to wade into the heart rate monitor issue because it was complicated. I would argue that sleep is the same with regards to M.E. You can't use normal rules.

 

This
Sleep hygeine at early stages of illness caused significant decline and this seems to be a common theme.
It dosnt generally work. It can be harmful.
For us, an initial improvement - in bringing sleep back to s more normal time - stalled. There was a time which didn't budge, and no daytime sleeping permitted. Then things got worse.
It is general advice , and like so much advice, works for other illnesses. That's what makes it dangerous - you feel it should work .

Tymes Trust have an info leaflet on sleep which I wish we had seen - sadly most look for info once things have gone pear shaped.

It is one of the most " smile and nod" ( ie don't subsequently follow advice but pretend you do ) info on parents forums.

Where does this advice come from ?

ETA personal relevance

 

Have created a separate thread asking for feedback on my notes:
https://www.s4me.info/threads/feedback-please-draft-info-sheets-pem-pacing.13712/ (members only)

 

I'm pretty sure it's the influence of psychological research. Much of psych research is based on what happens in healthy individuals when exposed to stressors and how to then reverse that effect. It often ignores the fact that having a serious disorder will produce a completely different effect that will likely be resistant to such attempts.

So, if someone is suffering from sleep problems as a result of poor sleep hygiene (shift work, work stresses, etc), the way to address that is to address the sleep hygiene issues. However, if there is a serious disorder underlying the problem, simply addressing sleep hygiene won't work, because it isn't the cause.

There are also some serious questions being raised about whether sleep hygiene was ever efficacious for anything: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4400203/

 

For more on sleep, this is the book you want. Good audiobook too Why We Sleep: The New Science of Sleep and Dreams https://www.amazon.co.uk/dp/0141983760/ref=cm_sw_r_cp_tai_frstEbSWEWDJA

 

I was talking to someone about this recently as they were telling me that they hadn't slept at all the night before because they were worrying about a relative coming to stay. Yet they were still able to function quite normally , go to a yoga class, and various other things during the day, visit me and talk non-stop for an hour.
I tried to explain that when I can't get to sleep most often it's not because I'm worrying about anything or other things associated with inability to sleep, it's like trying to get to sleep with the light on.... in my head.
Before I had M.E. I could sleep anywhere, anytime if I needed to, including naps in the smoking room at lunchtime, and on the bus on the way to work and going home.
That simply is almost impossible now; even in a dark room, in a bed without the everyday stresses of working.

 

It would be interesting to pin down exactly when the ludicrous idea of sleep hygiene became significant in ME. Early discussion seems to have centred around Moldofsky's work on fibromyalgia. At the Ciba conference his paper and subsequent discussion did not appear to point (Edited for typo) to anything significant in ME.

Even the Wessely Hotopf sharpe book from 1997 does not make any outlandish claims, so far as I can see.

 

It was certainly bandied about when I first became ill. I wonder if there was a policy behind it, or if it was just seen as common sense advice that couldn't harm anyone. Like exercise.

Then the BPS crew set about convincing everyone that we weren't credible witnesses to own condition and so any feedback from us has simply been ignored.

 

@TheBassist
I don't think that link works. At least I can't get it to open.