UK ME Association documents on pacing

Moved posts

In light of recent discussions on 'pacing' and 'energy management',
here https://www.s4me.info/threads/bias-...myelitis-cfs-2017-goudsmit.32906/#post-470664

I've had a look at the 2020
ME Associations leaflet on 'Energy management' and the other on 'Pacing', both in a pdf here

https://meassociation.org.uk/wp-content/uploads/ENERGY-MANAGEMENT-PACING-FEBRUARY-2020.pdf

Am I the only one who finds it contradictory and confusing?

(the key messages are lost among the 'boom bust' cycle stuff)

 

What they refer to as 'the vicious cyc1e' (see infographic) is (to me at 1east) what the very nature of ME/CFS is. That is, activity (inc1uding for the severe the very basics of staying a1ive) induces PEM and an increase in symptoms that requires substantia1 rest and time to dissipate (not just 'post-exertiona1 fatigue'). Not on1y that, it often on1y starts after a night's s1eep or 24-72 hours after the activity. So it's impossib1e to avoid negative 'consequences' if you have this medica1 condition. You'd have to be extremet1y mi1d and have a perfect environment and be fu11y supported by other peop1e to have any chance of doing so. Even if 'mi1d' it wou1dn't be possib1e not to suffer PEM at regu1ar interva1s, even with the best se1f-management. Pacing is just about trying to minimise symptoms as much as individua11y possib1e. I hate that the PEM PwME suffer is imp1ied to be the resu1t of their behaviour and them not managing their i11ness.

 

We are damned if we do and damned if we don’t. We are blamed for doing too much and judged for not doing enough.

 

And accused of focusing too much on our symptoms, whi1st their 'treatments' and 'management' approaches demand we focus on every minute of our dai1y 1ives and symptoms...Then accused of not being amenable to them if we refuse to engage in this oppression.

 

Updated booklet: Pacing
May 25, 2023

downloadable here
Updated booklet: Pacing | The ME Association

(I haven't read it yet)

 

I agree with @Trish, this is an important issue. For many people, if not most, any feeling better will be absorbed by daily living things that we were not able to do. This will be particularly so for anyone who is moderate or severe.

It may be that for people who are mild, bearing in mind that even mild ME involves 50% or less of premorbid activity levels, some improvement may allow limited exercise as a leisure activity. However it is important to remember a spontaneous improvement may still come with an ultimate activity ceiling and certainly comes without any assurances that it will be permanent. My experience has been that periods of apparent improvement has led to me increasing activity as much as possible, which has been associated with a subsequent relapse, leaving me more disabled than before.

It is important to be cautious about any increases in activity levels, and, despite our societies ideological commitment to exercise as an unqualified good, we know that there is no evidence that exercise helps ME, but rather risks worsening it. This means activities like yoga or swimming should never be offered, even by indirect hint as here, as therapeutic, but rather be regarded as a leisure activity only to be contemplated if they can be fitted within the individual’s current overall activity limits.

 

I suspect we lack reliable data on this, as if I am anything to go on, when I was investigated over the last thirty years of my ME would give very different answers to the question of the overall course of my condition.

In the first five or so years of my ME I generally improved over time, over the next ten or so years I would still say despite relapses my ME was after each relapse stable or improving, however on the longer term it has become apparent that with each subsequent relapse I develop more symptoms and experienced less subsequent remission. So now over the total the thirty year time scale on average my ME has deteriorated and currently I am not far off the worst I have been including immediately after the initial onset.

 

It is possible given this is a self selected sample that it underrepresents people who are improving or recovered, as it is possible that people more optimistic about their long term prognosis may be less likely to be picked up by the study or less likely to see a need to respond, however it does indicate that any source suggesting the improving to vary degrees is the norm needs to provide alternative data if they wish to be taken seriously.

Given the DecodeME sample contains a large number of people who have had ME for more than ten years this also may skew the response on the course of the illness, though alternatively as in my case the length of my illness has revealed an overall deterioration not obvious in the first ten years.

 

I have read it now and it is a great improvement on the previous literature. Glad that there is no mention of boom and bust.
But it says

and unfortunately as things stand a lot of these services version of pacing is the 'boom and bust' variety.

I'm not sure about this bit

(there is a charge for the new info leaflet on relapses).

My usual gripe; although there is a section on severe and very severe ME, yet again mild and moderate are clubbed together.

 

On the other hand, if I'd filled it in at a couple of points in my illness, I'd have said 'improving' or 'recovered'. I had fluctuating ME, which like investments can go up and down over time!—but even after several years of illness, I didn't yet understand that. For people like me, it'd be a case of overrepresenting those categories.

It'll probably just come out in the wash, TBH, and not really affect the results.

 

Also, the symptoms may appear to settle over time because the patient learns to control them, to an extent, by reducing activity levels to almost nothing. I was much more symptomatic with daily huge crashes early on because I had no understanding of what was going on and was overdoing it. Try increasing activity levels now and the symptoms would come flooding back.

 

(Just read it and would never pass it on to anyone) Whoever wrote this does not understand that anyone has ever deteriorated as a result of GET. I think this is dangerous and misleading because it completely fails to communicate that this is a safety issue.

 

I have problems with several of these items.

• Find a stable baseline before trying to increase your activities.

This is ambiguous.
Is it suggesting that such a thing as a stable baseline can not only be found but that it stays stable, and that once found it's OK to start trying to increase - which is pacing up or GET?
...
This is the part of the NICE guideline I have most trouble with.
Why frame it as 'you are making progress' which seems to imply it's an achievement down to the individual's actions, and why base it on 'you may want to increase...'? We all would love to increase activity. This seems to imply it's a matter of choice.
Why recommend adding activity at all? Why not simply recognise that when people are feeling a bit better they inevitably start doing a bit more, and add warnings about taking it slowly...

I agree completely. I'd read this leaflet as being an advert for the kind of pacing that is basically disguised GET. It's unbalanced, unsafe. I would really love to support this organisation and really want this leaflet to 'work', but I just don't see safety being stressed or even mentioned. It's like suggesting people look before crossing the road to save themselves the inconvenience of having to go to hospital if a car happens to be approaching and not have time to stop. No, just - no.

 

"If you have severe or very severe ME/CFS any increase in physical activity will have to be carried out in very small amounts, preferably..."

Increase in activity?! I have to ration the numbers of times I brush my teeth. It's a nitpik, and there are good points... but it still feels a bit incoherent. Bed rest isn't the answer? But try to avoid bedsores? If your primary concern is avoiding bedsores I don't think that avoiding bed rest is a viable alternative.

 

When is a flare up "Drop your activity levels, but do not go right back to the beginning unless really necessary."

So.. when I am too weak to feed myself and my mother has to spoon feed me, I will definitely try not to revert to the zygote stage!

 

'unless really necessary' shouldn't they learn that in the hands of the current cultural environment you can't provide that ambiguity (and then combine it with the ambiguity of not having severity-specific advice) to those who will be around pwme, who will be the ones who can frustrate judgement of those who might genuinely get it. There is sadly some weird inbuilt tendency for them to think the default of 'as little adjustments as possible' a la the silly deconitioning theory gotten out of hand into disability bigotry (they always ask for more than they need, and just need to be encouraged to meet half-way) will 'be the best compromise' when the opposite is true for ME.

If someone were to somehow get 'too much rest' it just means they'll recover more surely or even more swiftly than they would have without enough, and then they'll start doing more naturally, but the other way around is disastrous and means they'll be under par for longer - that really is the message that needs to be the punchline for all of this 'when someone has overdone it' stuff. The tone still feels 'careful their natural instinct is to lie down and give up if you let them' with that sort of thing.

Did they use the word flare up? I hate that term too, well particularly when it is just called 'a flare' as it seems to be a Crawley invention designed to minimise and patronise and really distracts from anyone understanding the condition if they think it is like when your ezcema calms down a bit then there is a change of seasons etc. It also seems to be used to merge a crash with a 'relapse' (which really just means crashed for longer time/worse e.g. months or more but is another term I hate because it is used for 'getting worse for a longer period of time, with no guarantee that you'll recover to where you were, and certainly nothing to do with you having recovered to be where you were in the first place').

I do think all of these different allies who might produce documents need to work together to get the language straightened out because vocab matters and I don't understand why there need to be reinventions of the wheel (which might lead to people grabbing old docs) when you want the advice to be specific and consistent too. But it would help if the words logically made sense to the generally points that need to be conveyed.

 

Spot on. Those pwme who can do anything see it as a privelege and do it because we'd all like to but we can't because our health is affected by it. So what is with the old school tone? I thought these presumptions about pwme might at least be vanquished in allies post Workwell and the new guideline.

And if they have been in a crash are more than likely already sitting on a list of overdue 'essential tasks' that they are trying to work out how to catch up on at the same time as not quite being back to the point where they can even fully look after themselves in the limited way they were before. So some external thinking they can now demand 'more' to be visible is silly as people will have enough on their plate trying to get to that emergency dentist appointment they had to forgo when they were so ill they couldn't move at all.

I find this obsession with exercise so misleading, I believe there are some other conditions where they just say 'don't exercise' so I can't help but wonder what is actually going on behind the scenes with ideology when people are wanting to cram in this subtle message of 'exercise is good and a cure and prevention for all' that has pervaded the medical profession without actually that much evidence at all. Muddied messages help noone. Mentioning it too much is distracting - speaking to laypersons they think the main thing with the new guideline was just 'about exercise' so it is a terrible message for anyone to now even be undermining that one. It was actually about activity and exertion.