Andy
Retired committee member
Open access at https://www.hindawi.com/journals/prm/2018/5801510/
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Physical Activity and Sleep in CFS and Fibromyalgia Syndrome: Associations with Symptom Severity in the General Population Cohort, 2018, Joustra et al
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ladycatlover
Senior Member (Voting Rights)
1% is high - 0.1-0.2% is the more usual estimate I think?
So they only used a self report questionnaire to choose participants.
Plus it's about FSS.
So the usual 
Snow Leopard
Senior Member (Voting Rights)
No really! Certain other Dutch researchers (think Nijmegen...) claim that actigraphy is not an important outcome measures because patients often have the same activity levels as healthy controls!!!!
Secondly, although they claim that patients with very low and very high amounts of sleep were associated with higher symptom burden, a higher amount of sleep was associated with lower symptom burden in controls, so claims that patients who sleep a lot need to cut down on sleep to reduce their symptoms may be on shaky evidence...
James
Established Member (Voting Rights)
Poor sleep quality rather than quantity (Judith Rosmalen a large clue towards bias)
http://simmaronresearch.com/2017/08/sleep-reduced-immunity-vicious-circle-mecfs-fibromyalgia/
http://simmaronresearch.com/2017/08/sleep-reduced-immunity-vicious-circle-mecfs-fibromyalgia/
Jonathan Edwards
Senior Member (Voting Rights)
This would not surprise me. People with arthritis may well have the same activity levels as controls.
My guess is that a simple quantity of activity is not the important measure. If all people have been doing with actometry data is measuring the number of wiggles per day I am not surprised it tells you nothing. Normal people quite often do very little. I suspect quite a lot of PWME struggle to do as much or more because they have to in order to get by.
I am interested in the idea that what needs to be identified is some sort of 'motor fatigue signature' for ME. They are doing this for Parkinson's disease. My impression as an observer at meetings where PWME mix with 'normal controls' is that just like people with RA, PWME have learnt activity conservation strategies that you can see in action. The number of movements is not necessarily less but the movements are made economically.
For RA I used to make use of learned movement strategies for objective assessment of pain levels and for teaching students. For instance, when assessing the ability of someone to upturn the hand to take change the RA patient with wrist pain involuntarily moves the elbow inwards to minimise the wrist movement. For those with shoulder pain the upper arm rotates before lifting the arm to put the weight on a different muscle group.
I think the conservation strategies for PWME are probably quite different because they do not relate to specific joint pain problems but to a need to avoid certain types of muscle usage. I may be wrong but I am not aware that anyone has really tackled this aspect. It was suggested to me be @Esperanza and it keeps coming back to me as potentially important.
Daisybell
Senior Member (Voting Rights)
Like trying to dry your hair....that’s a learned movement strategy now, it’s head lowered as much as possible and try to never have to lift your elbows up, because involving upper arm muscles, shoulder muscles etc is much more tiring. I can do my hair but only if I’m very careful how I do it - and it takes 2 minutes.
There may be something to this train of thought, not only regarding movement but generally how hard it is to measure our dysfunction properly.
E.g., I got sick during my last years of school and dropped roughly one level on my grades. But before, I was not trying that hard because nothing apart from the final exam mattered much and I knew I could ramp up when I wanted - based on my experience it would not have been entirely unrealistic to expect me to go up a level just by increasing the effort I put in (there was plenty of room to do that, at least in my estimation).
Instead I got sick, started to have to try really hard and still dropped down in my measured performance - but no one could factor in the effort it took to not drop further by looking at my grades, let alone know I 'should have improved'!
It also would not have taken into account how much else I wasn't doing anymore, obviously.
I don't know how good modern actometers are, but I toss and turn a lot when I am in pain when lying down and wiggle about a ton when I sit. Unless those devices somehow control for quality, we may actually get false readings pretty easily.
E.g., I got sick during my last years of school and dropped roughly one level on my grades. But before, I was not trying that hard because nothing apart from the final exam mattered much and I knew I could ramp up when I wanted - based on my experience it would not have been entirely unrealistic to expect me to go up a level just by increasing the effort I put in (there was plenty of room to do that, at least in my estimation).
Instead I got sick, started to have to try really hard and still dropped down in my measured performance - but no one could factor in the effort it took to not drop further by looking at my grades, let alone know I 'should have improved'!
It also would not have taken into account how much else I wasn't doing anymore, obviously.
I don't know how good modern actometers are, but I toss and turn a lot when I am in pain when lying down and wiggle about a ton when I sit. Unless those devices somehow control for quality, we may actually get false readings pretty easily.
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That’s because they do research on a group that doesn’t actually have me/cfs.
Other than that, it doesn’t really matter how much a sick person does and how much a healthy control does, the diffrence is that the healthy control COULD do more if they wanted to.
Actigraphy is a very good measurement if you take an average over months. Last year when I was moderate I did 3000 steps on average. Now I’m way better and I do 6000 steps on average.
There might be healthy people who just do 6000 steps a day, but the difference is that I can’t do more without getting worse.
Barry
Senior Member (Voting Rights)
What value do actometers actually measure (rather than any inferred measure)? Is it energy expended over time? Or something else?
And it may also be that if actometers are not always different from controls versus PwME, then that just might indicate misdiagnosis?
And it may also be that if actometers are not always different from controls versus PwME, then that just might indicate misdiagnosis?
Are actometers worn all the time? From a previous thread relative to paediatric EC studies i seem to remember that their use was intermittent ( could be wrong) . In which case what is being measured is a key question.
The link to activity and misdiagnosis is interesting and may be another reason why they are not used / data is dropped.
A recent thread in adolescent and parental descriptions of PEM had a quote from a child that he/ she didn' t have symptoms other than being tired. Clearly this is not ME.
Sadly this child was under the Bath CFS / ME service ( as were the others). If a centre that purports to be a centre of excellence for paediatric ME cannot diagnose it , then apart from obvious impact on the research side, we have a child, who has something else which is neither being explored nor treated.
Michelle
Senior Member (Voting Rights)
@Jonathan Edwards
How did you measure improved function in RA trials? I mean, as you are aware, you could measure, say, B-cells or whatever, and see improvement in that metric, but if the patient wasn't able to actually exercise more or work more or etc., it wouldn't be exactly clinically meaningful.
In Fibromyaglia studies, this is a real issue where treatment effect is based on screening tools like the Visual Analog Scale or the Chronic Pain Grade Scale or Brief Pain Inventory for severity and pain interference. But as a patient, I haven't found any of them particularly helpful in truly measuring whether I can move more or be more independent (to say nothing of their all being so inherently subjective as to be nearly meaningless -- particularly for chronic pain; and, of course, the trials are not randomized, or blinded, or well-powered, and we never get scatter plots to know what's happening in the tails and what, exactly, does "validated" screening tool mean? and how the hell does one diagnose fibromyalgia anyway? But I digress...).
I do use a pedometer but it also has some of the drawbacks already mentioned in this thread. I've found that there are some days where my cognitive symptoms are bad and I end up wandering around my apartment more, racking up more steps as I go. So while there are more steps, I don't think we would count that as improved function (and it certainly doesn't last as I'll see a drop two days later when PEM kicks in). I've also had the odd day where at some point I had to pee badly so I jiggled my leg a whole bunch, which got picked up as steps on my pedometer. I could also see a fair argument to be made that if someone where attached -- consciously or unconsciously -- to a particular outcome, he or she might change his or her behavior (move/walk more or less, as the case may be) to help achieve the desired outcome.
That said, as a long-term measurement of function, it's the best tool I've been able to work out to quantify improvements and declines. Imperfect to be sure, though much of those imperfections tend to be outliers. Given what we currently have at our disposal, actigraphy or pedometers seem superior to the alphabet soup of "validated screening tools" currently being used. But then, I would think you would have rather a lot of practical experience with this issue. How did you handle it in your RA trials?
How did you measure improved function in RA trials? I mean, as you are aware, you could measure, say, B-cells or whatever, and see improvement in that metric, but if the patient wasn't able to actually exercise more or work more or etc., it wouldn't be exactly clinically meaningful.
In Fibromyaglia studies, this is a real issue where treatment effect is based on screening tools like the Visual Analog Scale or the Chronic Pain Grade Scale or Brief Pain Inventory for severity and pain interference. But as a patient, I haven't found any of them particularly helpful in truly measuring whether I can move more or be more independent (to say nothing of their all being so inherently subjective as to be nearly meaningless -- particularly for chronic pain; and, of course, the trials are not randomized, or blinded, or well-powered, and we never get scatter plots to know what's happening in the tails and what, exactly, does "validated" screening tool mean? and how the hell does one diagnose fibromyalgia anyway? But I digress...).
I do use a pedometer but it also has some of the drawbacks already mentioned in this thread. I've found that there are some days where my cognitive symptoms are bad and I end up wandering around my apartment more, racking up more steps as I go. So while there are more steps, I don't think we would count that as improved function (and it certainly doesn't last as I'll see a drop two days later when PEM kicks in). I've also had the odd day where at some point I had to pee badly so I jiggled my leg a whole bunch, which got picked up as steps on my pedometer. I could also see a fair argument to be made that if someone where attached -- consciously or unconsciously -- to a particular outcome, he or she might change his or her behavior (move/walk more or less, as the case may be) to help achieve the desired outcome.
That said, as a long-term measurement of function, it's the best tool I've been able to work out to quantify improvements and declines. Imperfect to be sure, though much of those imperfections tend to be outliers. Given what we currently have at our disposal, actigraphy or pedometers seem superior to the alphabet soup of "validated screening tools" currently being used. But then, I would think you would have rather a lot of practical experience with this issue. How did you handle it in your RA trials?
MSEsperanza
Senior Member (Voting Rights)
edit: I wrote this considerably brain-fogged. Apologies for my clumsy wording.
This sounds very interesting. Also good to see that you still think that motor fatigue could be of relevance, @Jonathan Edwards.
I think you meant me (I'm not Esperanza, but another Esperanza
)
Apologies for going off topic a bit, but I would like to add that the type of motor fatigue that I have now first occurred not before the 10th year of being ill with ME. I experienced this type of motor fatigue first in my hands and then in my legs. I never would have described these impairments as motor fatigue. I experienced temporary stiffness, weakness and spasms in my hands and legs. But two docs said this was severe motor fatigue when I showed them a video documenting my strange gait (my partner had filmed this).
The most debilitating symptoms in the first years of my illness were not motor fatigue or muscle weakness, but 1) vertigo induced by fast movements or longer exercise and 2) delayed PEM which always felt as having a relapse of Mono (but wasn't).
My temporary impairments in moving or coordinating movements that I developed during the first years of being ill occurred in different types of fatiguability, either only few minutes after doing fast movements, or after longer exercise. I could still go for walks or cycling for up to 45 minutes, sometimes longer, before severe vertigo and cognitive issues occurred. Muscle stiffness or muscle weakness did not regularly limit my activities those days, perhaps because vertigo stopped me before they would?
However, I experienced phases of stiff legs or feet and sometimes pain or clumsiness or a kind of numbness in different limbs at different times over several days or weeks, always remitting completely. I don't recall any trigger for these phases in the first 10 years of being ill, except once, when I couldn't move my left arm properly after a gastrointestinal infection and having a high temperature.
So, in retrospect I am not sure when I began to develop motor fatigue or whether this would have been measurable in the first years of my illness. I surely had coordination problems with some movements when doing these repeatedly or fast, but I did not react with muscle stiffness or sometimes complete inability to move as I do now.
My neurologist still seems to think I could have some weird neurological or neuromuscular condition other than ME, after I was suspected to have MS over two years and high dose cortisone pulse therapy helped me significantly, but MS finally was found to be less probable. But this is another story I hope I will able to tell someday.
All I wanted to add is that, although I think motor fatigue could be an important part of ME, itprobably perhaps is not always present in ME or not in every stage of the illness? Maybe other impairments will limit activity before motor fatigue could occur?
However, I think that some typical ME symptoms like muscle weakness or stiffness might get confused with motor fatigue sometimes (edit: I mean that these impairmens might actually occur due to motor fatigue).
This sounds very interesting. Also good to see that you still think that motor fatigue could be of relevance, @Jonathan Edwards.
I think you meant me (I'm not Esperanza, but another Esperanza
)Apologies for going off topic a bit, but I would like to add that the type of motor fatigue that I have now first occurred not before the 10th year of being ill with ME. I experienced this type of motor fatigue first in my hands and then in my legs. I never would have described these impairments as motor fatigue. I experienced temporary stiffness, weakness and spasms in my hands and legs. But two docs said this was severe motor fatigue when I showed them a video documenting my strange gait (my partner had filmed this).
The most debilitating symptoms in the first years of my illness were not motor fatigue or muscle weakness, but 1) vertigo induced by fast movements or longer exercise and 2) delayed PEM which always felt as having a relapse of Mono (but wasn't).
My temporary impairments in moving or coordinating movements that I developed during the first years of being ill occurred in different types of fatiguability, either only few minutes after doing fast movements, or after longer exercise. I could still go for walks or cycling for up to 45 minutes, sometimes longer, before severe vertigo and cognitive issues occurred. Muscle stiffness or muscle weakness did not regularly limit my activities those days, perhaps because vertigo stopped me before they would?
However, I experienced phases of stiff legs or feet and sometimes pain or clumsiness or a kind of numbness in different limbs at different times over several days or weeks, always remitting completely. I don't recall any trigger for these phases in the first 10 years of being ill, except once, when I couldn't move my left arm properly after a gastrointestinal infection and having a high temperature.
So, in retrospect I am not sure when I began to develop motor fatigue or whether this would have been measurable in the first years of my illness. I surely had coordination problems with some movements when doing these repeatedly or fast, but I did not react with muscle stiffness or sometimes complete inability to move as I do now.
My neurologist still seems to think I could have some weird neurological or neuromuscular condition other than ME, after I was suspected to have MS over two years and high dose cortisone pulse therapy helped me significantly, but MS finally was found to be less probable. But this is another story I hope I will able to tell someday.
All I wanted to add is that, although I think motor fatigue could be an important part of ME, it
However, I think that some typical ME symptoms like muscle weakness or stiffness might get confused with motor fatigue sometimes (edit: I mean that these impairmens might actually occur due to motor fatigue).
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Snow Leopard
Senior Member (Voting Rights)
And most studies of CFS patients show on average, significantly lower activity levels as well as different activity patterns. CFS or ME patients are not arthritis patients.
There is some evidence for different motor control which may be related to both concentration issues as well as the hypothesised energy conservation. There might be more, but I've run out of time...
https://www.dovepress.com/gross-and...hronic-fatigue-synd-peer-reviewed-article-JPR
https://www.ncbi.nlm.nih.gov/pubmed/26745400
https://link.springer.com/article/10.1007/s00417-013-2431-3
https://www.ncbi.nlm.nih.gov/pubmed/19848558 (suggested higher energetic cost of walking!?!)
and related eye studies for anyone interested:
https://www.frontiersin.org/articles/10.3389/fpsyg.2018.01468/full
https://www.mdpi.com/2411-5150/2/1/2
https://www.tandfonline.com/doi/abs/10.3368/aoj.66.1.92
https://www.ncbi.nlm.nih.gov/pubmed/23689679?dopt=Abstract
Michelle
Senior Member (Voting Rights)
@Snow Leopard Very interesting links for ways we might measure function more directly rather than simply how one feels about his or her function. I suppose the 6-minute walk test might fall into this category as well? Sure didn't work out for the PACE folks in the way I think they expected it to!
While my first thought about the Dutch study mentioned above was to think they weren't studying actual ME/CFS patients, I suspect @Jonathan Edwards is probably correct that in mild to moderate ME patients, step counts probably won't differ all that much from sedentary controls. I see people here and at the old forum frequently mention step counts of 4000-6000 steps a day. Where step counts would probably really distinguish ME patients is in the more severe patients. As someone who is at about 400 steps a day (and I've improved since 2017 when it was 250-300/day), I can only fantasize about 4000 steps a day lol. Though, maybe saying I can only tolerate about an hour out of bed each day is just as effective at getting across my level of impairment? I dunno. Being able to quantify fluctuations in function seems to be helpful for my clinician, especially in getting across what might otherwise seem fairly inconsequential improvements (100-150 steps/day is, er, a certain percent improvement the math of which I can't really manage at the moment...
lol).
But this issue of measuring function more directly is, I think, a really important one when it comes to assessing treatment. And not just for ME. It's a big issue in Fibromyalgia with regard to medications, as well as GET.
While my first thought about the Dutch study mentioned above was to think they weren't studying actual ME/CFS patients, I suspect @Jonathan Edwards is probably correct that in mild to moderate ME patients, step counts probably won't differ all that much from sedentary controls. I see people here and at the old forum frequently mention step counts of 4000-6000 steps a day. Where step counts would probably really distinguish ME patients is in the more severe patients. As someone who is at about 400 steps a day (and I've improved since 2017 when it was 250-300/day), I can only fantasize about 4000 steps a day lol.
Though, maybe saying I can only tolerate about an hour out of bed each day is just as effective at getting across my level of impairment? I dunno. Being able to quantify fluctuations in function seems to be helpful for my clinician, especially in getting across what might otherwise seem fairly inconsequential improvements (100-150 steps/day is, er, a certain percent improvement the math of which I can't really manage at the moment... lol).But this issue of measuring function more directly is, I think, a really important one when it comes to assessing treatment. And not just for ME. It's a big issue in Fibromyalgia with regard to medications, as well as GET.