Bob
Senior Member
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- England (south coast)
I haven't read this thread is close detail, so I apologise if I'm repeating stuff or if I've missed important bits of discussion.
I agree with the general sentiment that ME symptoms are near-impossible to quantify.
The symptoms can fluctuate daily, and as soon as you participate in the slightest over-exertion, then all hell breaks loose, and so a fairly mild day can be followed by a drastically bad day. So, single-point measurements are poor indicators of health.
And each patient experiences a different of battery symptoms, or might label different symptoms as their most challenging or most disabling (e.g. exhaustion, pain, light-headedness, or cognitive dysfunction).
It's also the case that some of us can choose to do more activity at the cost of increased symptoms, or we can choose to do less activity with the benefit of controlling our symptoms. So a measure of either activity or symptoms may not be a helpful reflection of health status, as many of us spend our lives balancing the two (activity vs symptoms). However, I think that most of us probably increase our activity levels, at least to some degree, as symptoms permit, even if it's only having an extra shower, of cooking an extra meal, or shuffling around the home a little extra.
Subjective questionnaires struggle to measure subtle or unconscious changes in health, or gradual changes in health.
I consider the CPET test to be dangerous, for many patients, and I would never volunteer to participate in one. A one-day CEPT test would drastically harm me for the long-term.
A tilt table test would only be relevant for a subset of patients - not all ME/CFS/SEID patients have obvious or disabling OI problems. I've rarely experienced any OI issues myself, to my knowledge.
My preferred approach, to assess health of ME patients, would be for actigraphy, because I think this would be a fairly accurate indication of average fluctuations in health for most patients. We pace ourselves, so we control our activity, but I think we would all find it difficult not to do at least a bit extra activity if health permits. And with obvious improvements in health, we adjust our activity accordingly. Average activity is a far more accurate measure of our health than a single-point measure. Also, actigraphy would measure unconscious increases in activity, such as extra walking around the home. It's difficult to mentally record how much activity we are doing around the home. We only really notice large or obvious changes such as when we can cook an extra meal, or when we can make it to a local shop.
Also, as others have suggested, i think that regular cognitive tests would be a good indicator of cognitive function, which is a very challenging aspect of the illness for many. However, i think that the degree of cognitive impairment varies drastically between patients, and it may not be a major challenge for all patients. If using cognitive tests, only some types of tests demonstrate impairment in ME/CFS patients: For some tests we have near-normal results. We demonstrate impairment only with the speed of processing for certain complex tasks including multi-tasking. I can never remember the exact details, but they're easy to find if needed.
I agree with the general sentiment that ME symptoms are near-impossible to quantify.
The symptoms can fluctuate daily, and as soon as you participate in the slightest over-exertion, then all hell breaks loose, and so a fairly mild day can be followed by a drastically bad day. So, single-point measurements are poor indicators of health.
And each patient experiences a different of battery symptoms, or might label different symptoms as their most challenging or most disabling (e.g. exhaustion, pain, light-headedness, or cognitive dysfunction).
It's also the case that some of us can choose to do more activity at the cost of increased symptoms, or we can choose to do less activity with the benefit of controlling our symptoms. So a measure of either activity or symptoms may not be a helpful reflection of health status, as many of us spend our lives balancing the two (activity vs symptoms). However, I think that most of us probably increase our activity levels, at least to some degree, as symptoms permit, even if it's only having an extra shower, of cooking an extra meal, or shuffling around the home a little extra.
Subjective questionnaires struggle to measure subtle or unconscious changes in health, or gradual changes in health.
I consider the CPET test to be dangerous, for many patients, and I would never volunteer to participate in one. A one-day CEPT test would drastically harm me for the long-term.
A tilt table test would only be relevant for a subset of patients - not all ME/CFS/SEID patients have obvious or disabling OI problems. I've rarely experienced any OI issues myself, to my knowledge.
My preferred approach, to assess health of ME patients, would be for actigraphy, because I think this would be a fairly accurate indication of average fluctuations in health for most patients. We pace ourselves, so we control our activity, but I think we would all find it difficult not to do at least a bit extra activity if health permits. And with obvious improvements in health, we adjust our activity accordingly. Average activity is a far more accurate measure of our health than a single-point measure. Also, actigraphy would measure unconscious increases in activity, such as extra walking around the home. It's difficult to mentally record how much activity we are doing around the home. We only really notice large or obvious changes such as when we can cook an extra meal, or when we can make it to a local shop.
Also, as others have suggested, i think that regular cognitive tests would be a good indicator of cognitive function, which is a very challenging aspect of the illness for many. However, i think that the degree of cognitive impairment varies drastically between patients, and it may not be a major challenge for all patients. If using cognitive tests, only some types of tests demonstrate impairment in ME/CFS patients: For some tests we have near-normal results. We demonstrate impairment only with the speed of processing for certain complex tasks including multi-tasking. I can never remember the exact details, but they're easy to find if needed.