On fatigability and rationing as improved terminology over fatigue and pacing

[hallmarkOvME]

it's just a much better analogy.

Totally. For me it takes it out of the analogical altogether. It's what we're truly doing. Pacing implies a steady rate over time, as if each activity is expenditure rate.

 

[Sean]

Pacing implies a steady rate over time, as if each activity is expenditure rate.

Not my understanding of it.

I take it to mean matching activity levels to current symptom levels. Which may or may not be a steady rate, depending on how stable and predictable symptoms are.

For at least many patients, particularly early on when first learning how to apply pacing, they are not stable and predictable and the pacing response has to be continually or frequently adjusted.

I suggest that even most long-term patients with plenty of experience still have to deal with some degree of instability and unpredictability. It is just in the nature of the condition, and has nothing to do with incompetence or ignorance or unwillingness on the part of the patient. Just an inherent limit on what can be done with pacing.

 

[Hutan]

I love the term 'activity rationing', it makes so much sense.
It is hard to imagine the rehab people being delighted with it. All the more reason to use it.

 

[hallmarkOvME]

Not my understanding of it.

I take it to mean matching activity levels to current symptom levels. Which may or may not be a steady rate, depending on how stable and predictable symptoms are.

Symptom levels factor in, but they're contrasted, not matched. Pacing matches activity levels to energy levels and educated guess about how much you want for reserves, in case something unexpected demands your attention. Symptoms states, for instance on Visible (which I used for six months), also seemed to me to be an "afterthought" o, or subsequent to predictions some from longer term aggregations.

 

[Mij]

It's full stop when I start slurring my word.

 

[MrMagoo]

I saw a blog promoted on socials the other day by Tom Kindlon, but I can’t find it now.

Anyway it was an OT who explained that pacing is “harm reduction” (or should be) that it’s not compatible with real life to expect you can do it brilliantly but each bit of pacing you do well reduces the later harms.

I thought that was a great attitude to take, realistic and non-victim blaming. If only the rest of the ME/CFS HCP’s took that view.