Pacing - definitions and sources of information

Agreed but In the prognosis section it does at least cover the finding which is as I understand it the best available information that only around 5% make something that looks like full recovery. It covers that the first five years is when that’s more likely to happen. It also says that people can get worse as well as make some improvement or stabilise + which I don’t recall being mentioned in so many words any of the AFME materials other than reporting patients experience of trying different management approaches/therapies/supplements


But I’ve not got rose tinted spectacles about ME Association. - for example i disagree with their funding model of charging for leaflets. I remember looking at both AFME and ME Association right at the start and I went with the AFME ones because there were booklets that seemed to be comprehensive useful information I could use and send to my employer. With the ME Association ones as well as having a slightly bewildering list of topics and not knowing how much of it I would need to read there was also the faff of ordering them paying and having to get an email link and you couldn’t see any details of what was covered.

Only later I discovered that there are chunks of the Purple book available on the website under what is ME. So because ME Association website was off putting i went with the AFME materials and returning to work. I’ve not had chance to review the reworked version of the pacing booklet. Not sure if the AFME work one has been tackled yet.

 

I don't understand your point.

Are you saying ME patients should be given free anything the MEA produces? That would be one model, but it's not the one the MEA operates. They make a significant amount of their income selling their information sheets, membership which includes the magazine, and the 'Purple book' for doctors and patients. I assume this money is used to cover the costs of producing all these materials. The money has to come from somewhere, and sadly fundraising for ME in the wider public is an uphill battle.

Action for ME seems to work on a different funding model. Their information, such as it is, is free on their website, but they also employ about 4 fundraising staff and have a larger income than the MEA.

 

You have my sympathy. I'm in a similar state. Don't waste energy trying to explain a passing remark, it really doesn't matter.

 

The Emerge content on pacing is very good. It's short and to the point and says what it needs to say.

Minor issues:

Pacing is not really 'a management strategy designed to help people with ME/CFS live within their energy envelope and minimise PEM' - that makes it sound like a much more defined and established thing than it really is and as if there is some 'Pacing' product designed by others that you can take off the shelf and use. Pacing is more 'a collection of approaches that people with ME/CFS use to live within their energy envelope and minimise PEM'.

There are quite a few references to 'patients', whereas, especially when the audience is both people with ME and health professionals, 'people with ME' is preferable.

I disagree that rest 'should mean absolutely minimal activity'. Rest can mean any reduction in activity. I might do the dishes and then lie on the sofa to watch tv. Then I might hang out the washing, and then have a cup of tea with my feet up reading forum posts. Yes, of course, if in a crash absolute rest can be important, but there's no need to make life worse than it needs to be. I think this advice runs the risk of making people with ME feel guilty and I don't think there's an evidence base for it across the various severity levels.

I also disagree with this:
'If possible, patients should not attempt more activity until their PEM has reduced.' PEM has various levels, from feeling rather worse, with fatigued muscles, to a full-on crash that has you shivering in bed unable to think and aching all over. For the latter type, yes, resting is really the only sensible option. For the more general 'feeling worse', most people will need to keep doing some activity in order to meet obligations and keep themselves alive. It's just that it should be a lot less activity than is normal.

I think that statement is too unequivocal and directive to apply to such a poorly defined/variable state as 'PEM'.

I don't like the word 'triggers'.

I think PEM is typically the result of a combination of activities that together add up to too much energy expenditure. To me, 'triggers' sounds too much like a word that someone who believes ME/CFS is psychosomatic might use, with suggestions of PTSD. It's odd to apply the rather binary word 'trigger' to the very broad sweep of activities that use energy. Listening to my aunt on the telephone for 30 minutes can be fine when I'm feeling ok; listening to my aunt on the telephone for 30 minutes when I'm already exhausted can cause PEM. It's not accurate to say that my aunt on the telephone is a thing that is a trigger.

But, as I said, the Emerge material is very good.

 

Attached is a 3 page Activity Management document that I've drafted for my local patient support group. It has slightly more information than the Emerge document and fixes those few points that I thought could be improved.

The planned audience for the document is new members of our group. We have a meeting on Activity Management coming up this week where the document could be distributed and it will probably go on our website too. We also plan to give something like this to health professionals (mainly allied health professionals such as counsellors, physios and occupational therapists) at an education event later in the year.

We already have a pamphlet on ME/CFS which introduces the diagnostic criteria and defines orthostatic intolerance; the website covers those things too. The wider context is that we now have an updated HealthPathway in our region, so the health authority's online information for doctors broadly aligns with the messages in this draft, although it has much less detail about activity management.

I'd appreciate your feedback.
Edit - note new version in subsequent post

 

Very good. And nicely fitted on 3 pages. Which makes me reluctant to suggest changes. But you know me, I'll nit pick anyway. Feel free to ignore all my comments.

Introduction:

I wonder whether you can start the document by summing up the point of activity management before you dive into PEM. Maybe bring the broken battery bit to the top rewrite it, shortening the battery analogy. Something like this.
__________

Why energy management?

ME/CFS, unlike most illnesses, reduces our ability to do anything that requires energy, including normal daily activities like personal care, thinking and socialising. This means we need to make major changes to the way we live our lives, cutting back on energetic activity and taking frequent rests.
The biggest mistake many of us make is not resting enough. You cannot exercise your way back to health.

Some people find it helpful to think of it as like having a faulty battery that flattens very quickly and doesn't recharge fully when we sleep. Others find the idea of an energy envelope helpful, aiming to stay well within their daily envelope. Some recommend only doing 60% of what you feel able to do each day.
_____________

I'd leave out this sentence. Doesn't work for me. Not sure we have evidence to support it.

______________

A few other minor niggles:

Given that most people will already feel they have 'put their life on hold' just by having ME, I'm not sure that phrase is helpful here.
'Regardless, PEM is very unpleasant and can force you to rest completely while it lasts.'

Add heart rate.

That makes a big assumption that a daily routine is possible. I would not put it that way. It seems too rigid and does not allow for fluctuating energy levels.
I guess you cover that later, so maybe don't need to spell it out here.

I think it's worth adding the converse 'tired but wired', being unable to sleep, is also a sign of doing too much.

Do we know that? Any data? I think adding in 'and chronic fatiguing illnesses' confuses the picture.
Perhaps - Some people diagnosed with ME, CFS or post viral fatigue find their symptoms resolve within a couple of years. The recovery rate for ME/CFS lasting longer than 2 years is very low, so...

I'd change the heading of that section. Too easy to misread, as I did, leaving out 'any', so it reads 'Make increases in activity levels gradually', which sounds like GET. And we don't know whether the last sentence is true or not.

I would change this section to something much more cautious - basically the message of the whole document is, stay well within whatever your energy envelope is in recent times, adjusting down on bad days. If you're going through a bad patch, cut back to that new low level, if your health feels like it has improved and you can do a bit more, go carefully, don't try to push the envelope. Maybe a heading more like 'Don't push the envelope'.

I can't see any mention of severe or very severe ME. I think it's important to at least acknowledge that for some people complete rest is the only option and they will need help with personal care. For people with severe ME, reading things like being able to do gardening feels so outside their experience there's a danger they may feel excluded.

 

Thanks very much Trish! Very useful comments.

There are the Dubbo studies and Jason's Chicago study, and I think others, that suggest that 10 to 20% of people can have a post-viral fatigue illness after certain infections 6 months after illness onset, and that reduces over the first two years, to something like 2%. The people who recover before 6 months don't qualify for an ME/CFS label. And yes, many doctors would label an ME/CFS-like illness that resolves before 2 years as post-viral fatigue. I like your wording, with the reference to 'people diagnosed with'.

I think it's true that the easiest way to minimise PEM is to have a daily routine. It won't necessarily avoid PEM. And it's not necessarily the best way (it's boring), or a way that is possible every day. But I'll review.

Yes, the acknowledgement of the range of severities can probably be made more explicit. The other example, after the gardening one, is 'reading , followed by lying down in a quiet room'.

I'll make another draft taking your comments into account.

 

Here's the new draft.

 

Very good!

 

Thanks very much @Ravn

You may be right, but we have the HealthPathway in our region now that suggests that doctors have their patients keep a diary as part of the diagnosis process, so that they can check for PEM. And we are trying to inform health professionals in our region about the HealthPathway.

I think this isn't in the latest draft. But yes, it was the cumulative thing and I guess, although it wasn't expressed quite right, also the idea that if your routine is set a bit below the level that causes PEM, you might be ok on the days when the washing machine floods the laundry (or whatever example of an emergency is right for your severity level).

Resting up before a big day does seem to create some reserve that can protect against PEM - as opposed to rushing around trying to do stuff. Or perhaps rather than having something in reserve, it's just that we aren't going into the big day already in energy debt?

Oh, for some solid biological facts to underpin all of this.

 

hi @Hutan this reads well to me. My only suggestion is that information to bring a new topic to a general audience is best pitched at quite a basic level of reading and understanding. You’ve got some uses of the passive voice in there and some terms where you could try using simpler words instead, especially when you’re bringing in new ideas. Some people might understand pretty well but might struggle to read more complex words. For example instead of talking about physical and cognitive energy demands you could say something like - energy is needed for using your body or your brain.

 

Thanks Nellie, that's a nice phrase 'energy needed for using your body and your brain'.