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

Is this because it was written by someone drawing on their experience of ME/CFS service patients, which represent a very skewed sample of people with ME? When I was well enough to attend a specialist service my ME was much much milder than now. The specialist services forget that more severe ME exists.

Now as little 30 minutes to an hour not lying down can represent my daily maximum. As you get more severe, pacing becomes prioritisation, deciding which is more important getting washed or eating a meal. And that still ignores those that even the very basics of just going to the toilet or eating provoke PEM.

 

It reads like the plan of someone asked to come up with light duties for a day for a 'healthy' person.

It appears to be an important requirement that the person is kept moving as much as possible throughout the day i.e nothing that would be considered 'strenuous' (by a healthy person) but nevertheless continuous activity between getting up and going to bed.

It seems unlikely to me that this was done in consultation with anyone with ME, or probably any other chronic limiting condition.

For an ME charity to be coming up with this shows an unacceptable and complete misunderstanding of what ME is.

ETA - the weekly planner shows no understanding of, or evidence of knowledge of, PEM. They go as far to to seemly accept that people may need to rest before and after a demanding activity, for a few hours, but that's it. That is not PEM. It's not how PEM works. I, at least, can't simply schedule it in to a few hours at the end of a day. If I could then ME would be, relatively, a cakewalk.

 

The advice I was given on pacing, some years ago, through the Sheffield ME/CFS service, included frequent switching between activities: so say quarter of an hour reading, quarter of an hour walking, etc. The bigger the difference between activities the better. This involved the suggestion that doing things for relatively brief periods but frequently switching between activities would allow a significant increase in the total amount of activity possible.

To a degree at that point in the course of my ME this might not have been totally bad advice, though we lack basic empirical data to support this claim. In the short term my interaction with the specialist service resulted in an increase in my recorded daily activity level, though it was several months post discharge followed by a significant relapse.

It is possible that for some people activity switching such that no single activity reaches threshold for triggering PEM may result in increased activity levels overall, but we just do not know if this is the case or not. Now that my ME is more severe and orthostatic intolerance is an issue for me, such advice for me would be irrelevant and indeed unhelpful.

I would argue that clinicians currently should be supporting people to become aware of their own current thresholds and limitations, rather than, albeit indirectly, working towards rehabilitation. There is enormous potential for research trying to identify what are the relevant factors in managing activity levels, but given we know so little, clinicians should not be promoting acting on untested theories on the basis of ‘it sounds like a good idea’.

 

I second that.

 

Does pacing for people involve filling out all these activity diaries and so much planning in advance? That seems like a lot of cognitive work.

 

I do not. I listen to my body.

 

When I was referred to a specialist service, I was already recording everything I did in quarter hour chunks onto a data base. So I continued this whilst seeing the service. It was very useful getting automatic graphs of various activity, particularly in spotting patterns over days and weeks. It did help me begin to understand the idea of delayed PEM, before I had come across it in the literature. But it did use up a large amount of cognitive activity, and was only possible because I was only relatively mildly impaired at the time. (This was before such as Fitbits were readily available.)

Now, such record keeping would only be attemptable if I could cut out other activities such as eating or going to the toilet. (And it is very possible that I could now no longer be able to cope with creating the databases and reports required.)

 

I do plan, but not like AfME advises.

I have a 'list' of things that need to be done, and I can spend a 'while' determining how to do an individual task if it's not a routine task, often much, much, longer than the task actually takes is spent on 'planning'.

Not as long as I used to, as I no longer have to make everything cat safe in between stages, so I can normally just pick up where I left off rather than having to get everything back out again.

Most things take several days, both in planning and bringing everything together, before anything happens e.g before Christmas I started putting secondary glazing on 3 windows, I did one before Christmas, a second one was done today and the third will probably not happen, due to planning (I've probably decided that a different solution would be 'better' for the third window).

I've had all the stuff to do all 3 windows since before Christmas, but each window requires preparation, cleaning, handles removed and stored, magnetic tape measuring and fitting - all of which require bits and tools to be gathered.

I'm currently experiencing significant PEM, my physical and cognitive abilities are somewhat limiting both in scope and duration, and I can't have stuff lying around getting in the way - and I have to be functional enough to exist in the meantime, so timing is also an issue.

Getting anything done beyond bare survival requirements requires inordinate amounts of 'planning' and 'organisation', over a month for a trivial 15 minute job, so far.

So I do plan, it's just not the same thing as AfME describe.

ETA - not full windows - the piece of secondary glazing I put up today was 940 by 700 by 2mm, so I'm not talking about huge pieces of perspex. Basically the hinges on the double glazing are distorted a bit leading to gaps around the edges too big to fill with draft insulation seals - as my housing association isn't interested in replacing the hinges, and I can't, the simplest solution is just to completely cover that pane to stop drafts and spiders.

 

Have attempted to organise attending a couple of family funerals and failing dismally, I now have a rule of thumb that if the planning to do something is in itself triggering PEM, I probably should not attempt to do it.

Having said that, I currently have personal assistant time each week and she is helping with the planning stage, so more things become possible. Though I am aware very much that this risks increasing my activity levels such that a longer term crash becomes a danger. It is hard to use this opportunity to enable me to do the essential part of an activity without overall attempting to do more. Achieving things becomes addictive, so I keep wanting to do achieve more, rather than just being content with finding ways to be more effective with what I am currently able to do.

 

Have skimmed through it in bits, enough to notice that a) you'd need to be proficient in pacing before you can safely attempt to read about how to do pacing and b) that it's not worth reading in detail.

It reads like something collated by committee with everyone insisting their favourite piece of information (or opinion) be included and nobody in charge to ensure the whole thing is internally consistent. So we have some really good bits, some rather silly bits and some bits that are plain nonsense (to put it politely).

 

I thought the sample activity diary was out of touch with what I, as a person on the milder end who evidently does quite a lot already, can do. I would struggle to do the first half of that day, let alone all of it.

I also agree there are also unevidenced claims in there. I've heard the 'no more than 8 hours' thing, and have never seen solid evidence that it's a universal truth. My own understanding is that this is highly personal. When I was healthy, I routinely slept 9 hours and felt great afterwards. (The Sleep Council suggests 7-9 hours is normal for adults, and 8-11 for children of various ages: https://sleepcouncil.org.uk/how-much-sleep-do-we-need/)

Then there's the fact the whole thing is too long anyway... It's not all a wasted effort, but I think they need a more diverse set of patients to consult on these things. They shouldn't rely on ambulatory, mild patients only, which would be the impression from this.

 

I started reading the AfME document, but found it heavy going and decided I had more important things to read today.

Regarding @Peter Trewhitt’s comment on the advice he was given on activity switching... I think that advice is unhelpful. When I was at my most ill, I found that the act of switching between activities totally drained me of mental energy. Actually I still find it better to do one activity slowly slowly, with day-dream breaks, than to try switching to a new task. Switching is a form of multitasking, and frankly that’s difficult even when fully well, alert and functioning.

@dave30th asked about diary keeping. I did a couple of months of that early in my illness, and it was useful to show the doctor how little I was able to do, and how very much I was sleeping (at that time 2 hrs morning, 2 hours afternoon, and often 10 hours at night).

However, one sympathetic Dr I saw about 6 months in, advised me that I was probably wasting energy filling these charts in, and that it was time to let that activity go. He understood that dealing with ME was about dropping things from your life. He also said: to listen to my body; that allowing relapses was serious; and that I was always to do less than I thought I was able to do. Sadly he then retired.

However his advice, “Do only 60% of what you think you can do without producing symptoms” stuck with me! That was a real tough moment, as I was hoping I could push my limit up a little. Instead, I was advised to cut right back, and for a LONG period. He told me not to expect any improvement for at least 6 to 9 months! (I think he didn’t want to scare me by being honest and that this could be MUCH more long term than that!)

I should add here that I was also being given conflicting advice by other doctors, and one advised me that 3 short brisk walks a day was the way forwards. THAT of course was the advice I wanted to be the best!! I know now it wasn’t!

In my opinion, the toughest thing of all for an ME peep to do is to recognise when they are approaching their energy ceiling and to pull back in good time. My ceiling may be higher now, but it still dictates how much I can do by the minute, the hour, the day, week and month. I think where I’ll be this time next year, depends on both how well I respect that ceiling, and plain old luck.

We all exist in uncertainty. But I think we do instinctively know when our bodies are telling us to slow up. The difficulty is that neither society, nor ourselves, wants us to listen to those evolutionarily ancient warning signs.

Okay - that’s my musings for this morning over.

 

Thanks for the shout-out Nellie
The blog is currently hibernated for a while, but a few of the Pacing posts I wrote are linked from this page:
http://sallyjustme.blogspot.com/2014/08/index.html

 

Yes, I was told that too at one point. In retrospect this is bad advice, in my opinion, as it completely fails to take into account that physical activity causes deterioration in cognitive function and cognitive activity causes deterioration in physical function. Then you are so busy trying to get your head around your own plan, before you know it you're in real trouble. Also as the deterioration sets in you become much less efficient and tasks take much longer. You actually achieve more by doing less

 

I have not read the booklet yet, but it is my understanding that those with ME, such as @phil_in_bristol were involved in pulling it together.

Can @phil_in_bristol confirm how many people other than very mildly affected contributed?

My concern is similar to the Oxford Brooke's NICE consultation - the way this was initially framed there would have been no cognisance of moderate/ severe and severely affected pwME.

From the comments posted, it would seem that this continues to be an issue. And that becomes dangerous.

 

Anytime I have been asked to keep a record like this they have completely ignored any additional burden it might cause.

There is also no recognition that filling out these forms in such detail means that you are constantly having your limitations shoved in your face. I found these forms had a negative impact on my mental health and started to suck the joy out of doing an activity I might otherwise enjoy.

Also they can so easily be used against you.

Record that a task that should take 10 minutes took you 2 hours because your function was tanking and it's - oh great! You can do that for two hours!

Record honestly the downtime you need and "look! Great room for improvement!"

 

Complete the diary, but don't under any circumstances concentrate on the illness, symptoms or limitions imposed thereby. That would , of course, be counter-productive.

 

I second this. For a lot of activites it takes 15 minutes just to set up the things needed, remember where I last left of and get into the right mindset for doing it. Switching between activities that often would mean I would barely be able to do anything, and just spending all my mental ability on preparing for activities, and then the next one. I feel exhausted just picturing doing that, even as a healthy person.

 

This should be an eye opener for some. They're equating PEM with the 'bust' in boom and bust. This is total nonsense of course and shows how little they have listened to patients describing their experiences.

Does anyone relate to the following?

Because the above description has never described my experience.

What is notable is that ALL studies that have objectively measured activity levels show that patients most patients actually have more consistent activity levels with lower intensity peaks compared to healthy sedentary controls, suggesting that "boom-bust" is not a perpetuating factor for a large majority of patients.

Nope.

The idea that GET is built on a deconditioning model is a myth promoted by people who don't understand exercise physiology. Doing the same or a little bit more of a low intensity activity does nothing to reverse deconditioning. Doing somewhat intense activity for a short period of time then doing less intense activity for a few days, before doing intense activity again (slowly increasing that intensity over time) is how you reverse deconditioning.

GET is a type of cognitive-behavioural therapy that targets behaviour, rather than cognitions and tries to break behavioural patterns such as avoiding activity due to fear or kinesiophobia, break hypothetical boom-bust cycles and challenge (through behavioural activation) the cognitive expectations of experiencing symptoms after performing a particular activity. Whether those hypothetical behavioural patterns are common in CFS patients has never been demonstrated using objective evidence (e.g. actigraphy).