#MEAction: PACING AND MANAGEMENT GUIDE FOR ME/CFS

DigitalDrifter said:
Good except:

I think they should leave that bit out, it might give people the impression that ME is psychosomatic.
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I can see how including this might give the perception that ME is psychosomatic.

At the same time, "emotional energy" does seem like an important factor in one's energy envelope (that could be overlooked since it is not physical or exercise). I think it might have even been one of the categories Stacey Stevens mentioned in the Workwell presentation last week (and that list even had a bullet point for something described as "spiritual energy"). It does seem to come up, anecdotally, as something that can be draining.

Maybe there is a better way to phrase it? Or some way to incorporate it into one of the other categories?

I had not heard the following statement before regarding delayed PEM. Are they suggesting that the lag between exertion and PEM gets larger the longer you've had the disease? I am also confused by what they mean by delays increasing on a circadian cycle? If there is simply a delay between one thing and the next, what does it have to do with a circadian cycle?

ME Action said:
Post-exertional malaise may be delayed...Anecdotally, these delays are more common in long-standing disease and may increase on a circadian cycle with greater and greater distance between the triggering event and PEM.
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I think we should steer clear of being too specific on the basis of anecdotes. Both the emotional energy and circadian idea sound like hokum to me. I would prefer something as important as a pacing guide to stick to practicalities.
 
I think this is really good - clear and covers all the important areas.

I personally don't find the phrase 'emotional energy' problematic. I definitely find that anything that requires emotional energy is more draining. A confrontation, disagreement or a worry that gets adrenaline flowing can cause PEM. Something traumatic or shocking can put me into a really bad crash. I think the phrase is a bit vague but I can't right now think of a better one.

One bit that I would perhaps change if it was me is the bit that says, 'planning on soothing, low-energy activities like shows to catch up on can mitigate the fallout after necessary exertions'. For me, watching TV or anything with a screen is the worst thing I can do after activity and it aggravates symptoms. Watching Bake Off can be my activity for the day rather than the recovery period! I recognise though that this is just a suggestion and that for some people watching TV is probably restful.
 
Tia said:
One bit that I would perhaps change if it was me is the bit that says, 'planning on soothing, low-energy activities like shows to catch up on can mitigate the fallout after necessary exertions'. For me, watching TV or anything with a screen is the worst thing I can do after activity and it aggravates symptoms. Watching Bake Off can be my activity for the day rather than the recovery period! I recognise though that this is just a suggestion and that for some people watching TV is probably restful.
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Couldnt agree more. I realise this wont be the case for those at the milder end perhaps, but for me the notion of watching tv as something to include in a recovery period, rather than an exertion that has to be recovered from in itself, is a wild fantasy.
From some recent activity diaries i identified too much (ie hardly any by a healty persons standard but still 'too much') tv as what was likely tipping me over into PEM.
 
I have just read through the whole document. I appreciate the effort that has gone into it, and much of it is very good, but I hope Jaime will be open to suggestions for improvements to any second edition.

Here are my suggestions:

Pacing is a self-management strategy for activity. Patients who pace well are active when able, and rest when tired. They may plan extra rest ahead of strenuous activities
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That sounds far too like what a healthy person does. Most pwME need to completely avoid, and are completely unable to participate in 'strenuous activities'. And to be honest the suggestion that it is 'tiredness' that makes us need to stop is just plain wrong.

Here's my version.
Pacing is a self-management strategy for activity. Patients whose health and circumstances enable them to pace effectively learn to take rest breaks during and after activities, stopping when symptoms start to increase. They may plan extra rests before and after activities that are likely to be more demanding than they can usually manage.

While graded exercise may be useful in patients who are deconditioned after surgery or a severe illness, graded exercise does not address the metabolic changes and atypical reactions to activity that lead to symptoms in people with ME.
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I think attempting biological explanations for why GET is wrong for ME is a bad idea. We don't yet have certainty about the biology. Better, I think, to focus on the know fact that GET doesn't work and many patients report it makes them sicker, which she does in the next paragraph.

Exertion is defined here as anything that stresses or strains the system. Some stressors are within the patient’s control and some are not. Identifying triggers for post-exertional malaise is vital to a person with ME’s physical and psychological well-being.
Potential triggers include:
Physical (exercise)
Orthostatic (standing for long periods of time)
Cognitive (long conversations, scholarly reading/writing)
Sensory (loud, repetitive noises, bright or flashing lights)
Emotional (challenging interactions, tragic events)
Environmental (proximity to allergens, changes in weather, seasonal changes)
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I'm not a fan of redefining terms. As far as I'm concerned, exertion means anything that requires effort and use of energy, which to me means physical and cognitive activity, and activities that combine them like social activity. It is true that other factors in the environment can trigger symptoms, but I don't like them being included in PEM. I think it muddies the water. They are, as far as I am concerned, a separate, though for some very important, category of triggers of worsening.

Anecdotally, these delays are more common in long-standing disease and may increase on a circadian cycle with greater and greater distance between the triggering event and PEM.
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As said in an earlier post, I don't think this is helpful.

Cut activity in half Decreasing activity by half to start with can help the person with ME find a baseline -- with the understanding that the baseline can become better or worse over time. While some people with ME have a progressive disease course, many may increase their baseline by avoiding PEM
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Not sure there is evidence for the distinction between 'some' and many 'here'. Do we have any evidence that more people improve than worsen, as this seems to imply?

The basic idea of cutting activity in half as a starting point for trying to find a baseline seems fairly sensible for those with mild ME. Some people go straight into moderate or severe ME, and only cutting preME activity in half wouldn't get anywhere near low enough to find a baseline.
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Overall impression. Fairly good, but seems designed for people with mild ME. Totally unrealistic and misleading in many ways for people with more severe ME. It reads to me a bit like someone learning to slow down a bit, not a realistic guide for people who struggle to have a shower, or whose life circumstances make demands they can't meet.

To be honest, as someone with 31 years experience with levels from mild to severe, and who has throughout had no option but to push myself physically beyond my limit repeatedly just to keep my life functioning, I find it quite depressing.
 
wingate said:
It does seem to come up, anecdotally, as something that can be draining.
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Draining implies energy consuming; given it counts as cognitive in some way, then I agree it probably does consume energy. But maybe better to clarify it being the cognitive energy drain that is significant, to avoid conflation with "being emotional", and the psycho-babble connotations of that.
 
I agree with Trish and what others have said above about some of it not being relevant to severe ME.

But I would also add that the bit about emotional distress / challenging situations is important. It is one of the weirdest parts of the illness. When someone snaps at me, or someone hurts me or a doctor talks to me in an angry tone of voice, I actually become physically unwell even when I have done nothing else. The emotional distress really does trigger PEM for me and is one of the things actually which I need to be most careful of. My symptoms come on, PEM comes on. I had a massive flare a few years back just from a text msg finding out a friend was in hospital, I literally became unable within seconds to get to the toilet even in a wheelchair even though before that I was able to. And it lasted for weeks.

Infact my ME specialist has written somewhere in this report for ME that cognitive and physical exertion but also emotional exertion (can’t remember if he used the exact words), can affect ME deeply and cause PEM, and need to be taken into account when pacing. I’ve found that to be the single most important piece of advice from the past year, as well as the resting part.

It is much worse, almost on an exponential graph, the worse my ME is. I’m sure I’m not the only one? I’ve always been “sensitive” but this physical deterioration is new.
 
Trish said:
The basic idea of cutting activity in half as a starting point for trying to find a baseline seems fairly sensible for those with mild ME. Some people go straight into moderate or severe ME, and only cutting preME activity in half wouldn't get anywhere near low enough to find a baseline.
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In which case cutting in half repeatedly would soon get down to a much lower level, each reduction being done as soon as obvious the level currently reduced to is unsustainable. Whether that would be every day, every few days, I don't know. But it's a classic way of rapidly homing in on a starting point in many contexts. If it is found you then go too low, you then go back up, but only halfway back up towards the previously level. And if that is too high then go halfway back down towards that previous level. Binary chopping.
 
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Barry said:
Draining implies energy consuming; given it counts as cognitive in some way, then I agree it probably does consume energy. But maybe better to clarify it being the cognitive energy drain that is significant, to avoid conflation with "being emotional", and the psycho-babble connotations of that.
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I don't think emotional energy expenditure has to be related to cognitive activity. The body responds physically to emotions - heart pumping, muscles tightening etc., it takes energy for your body to mount that response. The response equates to activity like any other activity can cause PEM.

I know this is hugely simplifying the relationship between emotions and physiology but that's how I think about it.

I'm not sure that having the line about emotional energy in the document does imply that it is just 'being emotional' but rather might explain why it could appear that way?
 
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