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

Mmm there are some changes in emphasis but it very much refrains from any explicit criticism of the NHS approach.

I don’t have the energy or inclination to highlight detailed criticism at this point.

I feel it is weak on heart rate monitoring basically leaving it to the NHS guy to say it isn’t that helpful and bizarrely saying you should seek help from a specialist when it’s known that the NHS doesn’t offer any help with heart rate monitoring.

Sleep stuff is usual hygiene waffle.

“Pacing up” aka GET is danced around. Increase by maximum of 10%. There is too much use of walking as an example activity which could be perceived as thinking walking is a good idea.
The section about pacing at work doesn’t give any depth about how trying to keep working can be counterproductive and how many/few people with ME are able to keep working.

lts got more caveats than the old version but it isn’t a major overhaul.

no mention of Workwell

My grumpy reaction is 4/10 you can do better than this AFME

 

I haven't read it yet. I'll try to soon, if I can face it. Two initial impressions - the picture of three individuals on the front page suggest it's for people with mild ME - why no pictures of people resting or in bed?

Second impression - it's very long. I can't imagine why it takes 64 pages to explain pacing.

 

Far too much about planning ahead. As far as I'm concerned, planning ahead is setting myself up to fail.

And the rejection of heart rate monitoring and no mention of step monitoring is lazy. Why not investigate it properly instead of rejecting it out of hand? They seem convinced that diary keeping and forward planning is better than listening to your body, assisted by a mix of past experience, how you feel right now, and feedback from heart and step monitors.

I know of no evidence to support this assumption. It looks to me to be too heavily influenced by the experience of the physio who works in an ME clinic and is used to their standard diary based methods that they've been teaching patients for years, and feedback from patients who like that method (or pretend to).

And far too much about 'pacing up' which they insist is not the same as GET, and which they present as a patient choice (implying in at least one place that those who don't 'choose' to pace up are not trying hard enough). The SMART thing on page 49 I find repellant - a mix of management speak and oversimplistic blandness. It doesn't feel like it has anything to do with real life.

I haven't the energy to read the whole think in detail. It is an improvement to see emphasis on only increasing activity if it's sustainable, ie staying in the energy envelope even when 'pacing up'.

My general impression is that they have made a huge mountain out of what could be explained in a couple of pages, while not actually offering the full range of strategies people find helpful, such as step and heart rate monitoring.

As far as 'pacing up' is concerned, all that really needs to be said is that some individuals may find that their ME improves a little over time, and their energy envelope expands a little, and advice to be careful not to push up activity too fast when this happens.

 

64 pages.

Nuff sed.

 

The previous version was written by someone not sure if the same person from NHS clinic. It seems rather than do something based on patient experience they’ve dabbled with the existing material and had it reviewed by some patients.
I think they’ve missed an opportunity to meet the need for a succinct guide to pacing by people with ME in favour of not offending previous partners.
The manual I got from the CFS clinic is shorter than this and covers the same ground much of the content is similar.
Content on the lines of @Keela Too s blogs would have been a much better starting point than the old booklet.

 

There are some good bits, but then, with 64 pages to fill, it's almost inevitable that some of it will be.

Adding this to the list of problematic bits:

How do they know that reducing sleep length increases 'sleep quality' in people with ME? How do they know that a person with ME sleeping for 14 hours doesn't need that amount of sleep for their body to do all that a healthy body can do in 8 hours? Producing the chemicals the body needs for the day ahead is work, just as much as unloading the dishwasher is. To me it's not surprising that sometimes or all of the time a person with ME takes longer to achieve that than a healthy person would.

The month when my son slept for 20 hours a day coincided with a growth spurt. He still needs at least 12 hours.

This is from the first webpage about sleep that came up in google:

But according to the Pacing manual advice, those healthy teenagers sleeping for an average of over 9 hours should be cutting back in order to increase sleep quality

And this - Don't worry if you feel worse when reducing your sleep! Push through! It wlll probably all be better in the end!
Where have we heard that before?