Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 19, 2011.
Latest paper by Julia Newton
So 21% did.
I think I've seen more sedentary groups.
This is the most detailed/best I've seen in ME/CFS research
The following is interesting:
The CBT School of thought say we spend too much time resting/in bed. This shows we spend no more time being sedentary than others (it's just that for the rest of the time, our activities are less intense).
They talk about this in the discussion section:
I'm not sure what they are getting at here. I wonder is the ceiling effect in the fatigue scale i.e. the moderate and severe patients score similar (high) scores.
I find this bit annoying:
I think the evidence from other programs is weak. For example, Wiborg et al. (2010) found that there was no increase in activity levels over the control group from the three supposedly-successful CBT programs involving CBT.
And I don't like them using "sedentary behaviour" here when their own study found the CFS patients weren't anymore sedentary.
News flash: ME/CFS patients have reduced levels of physical activity. No duh.
So their research demonstrates that low levels of physical activity are attributable to a decrease in physical activity intensity. Brilliant.
This is what they're spending precious research dollars on.
Geesh ... Why do they keep doing ridiculous studies like this ? I'd like to have access to their bank accounts for just one day .... ugh .... x
No, it's pounds... (no surprise)
Did they test another bunch of non-PWCs? Maybe a group of poorly managed depressives?
Agreed, I think that overall the findings are interesting and important, despite some of the unsubtantiated conclusions. As they say, the fact that they used large and well matched sample as well as control groups make these findings more reliable than those from other studies:
As Dolphin implies, this undoes the 'pervasively inactive' theory of the biopsychosocialists.
My once concern is that this study found no correlation between fatigue and activity levels, which is suprising. One possiblility is that the CFS particpants were all Pacing, modifying their activity levels to control fatigue.
Another possibility is that few, if any, of their subjects had CFS, but instead their cohort was a mixed bag of idiopathic fatigue and depression patients.
the paper states that the patients were all diagnosed according to Fukuda criteria so it would be suprising if 'few, if any' had CFS, but the fact that 21% met the WHO guidelines for 10,000 steps a day suggests that as a group they were not exactly severely affected.
I'm curious as to what this citation 20 is.
20. Vercoulen JHMM, Bazelmans E, Swanink CMA, Fennis JFM,
Galama JMD, Jongen PJH, et al. Physical activity in chronic
fatigue syndrome: assessment and its role in fatigue. J of
Psychiatric Research 1997; 31:66173.
thanks :Retro smile:
My post was inspired by oceanblue's comments rather than a direct response to them. Newton et al 2011 found that low levels of overall physical activity are attributed to a decrease in physical activity intensity rather than high levels of sedentary activity. Like others here, I don't like how the findings refuted one piece of behaviour-babble (patients spend way too much time resting or in bed) only for the authors to replace it with another ("potentially modifiable perpetuating factor" = CFS patients just need GET to successfully increase the intensity of physical activity).
There are good reasons why patients avoid physical activity of higher intensity. Years ago I wondered if low intensity GET didn't work then maybe I just needed to do shorter bursts of more intense activity, let's just say it didn't work out either. ;-) The authors themselves mention a few possibilities, a "functional deregulation in the muscle or autonomic function" or patients avoid activity because of "perceived negative consequences such as post-exertional malaise or increased pain".
Recently however, another group of researchers (Meeus et al 2011) not only found their CFS patients to be more sedentary than healthy sedentary controls but found that patients who were less active and more sedentary with better "activity dispersion" reported fewer symptoms and variations on the same and next day. Here is the results in the abstract, some but not all of the findings seem to be opposite of Newton et al 2011:
As for the lack of correlation between fatigue severity and physical activity in Newton et al 2011, it may depend on how fatigue is measured, perhaps it is the decades of researchers' overemphasis on fatigue which may make this finding surprising if we are used to the paradigm that ME/CFS is primarily about fatigue, but I'm not that surprised and there are a number of possible explanations.
In my own experience a later decline of function compared to the earlier years has been less about baseline fatigue and more about other symptoms or complications and the body's inability to sustain normal output without worse consequences, especially at higher intensities of activity. I also remember reading an article about the stages of ME (from Cheney or Ramsay?) where baseline fatigue or whatever often improving but long-term patients often remain even more impaired than before because of the toll on the body and additional symptoms etc.
As oceanblue's comments suggest, those with more severe illness leading to lower physical activity may have already adapted their activity pattern to control the fatigue. Whereas some high functioning patients in the earlier stages of illness may have higher than expected levels of fatigue because they are in a constant state of post-exertional fatigue due to pushing through symptoms to attempt normal living while their body still can. There are countless anecdotes of such patients who were able to do this in the beginning (contrary to all the simplistic decondition-babble) only for it to eventually take a massive toll on them in the long-term.
Newton et al 2011 wrote on the lack of correlation: "We would suggest that this is explained by a ceiling affect in the symptom assessment tools i.e. a relatively low symptom burden leads to significant impact upon physical activity levels." Are they saying, as Dolphin suggested "the moderate and severe patients score similar (high) scores", or are they saying patients are just over sensitive to minor increases in symptoms?
There is also two recent systematic reviews to consider:
i for one take on board that my percieved risk of negative consequences has limited my physical activities in a detrematal manner, so I'm off to hold a picnic in the fast lane of a motorway, after all how many people actually suffer harm doing this, the risk is clearly totally imaginary.
I have not read the full paper, but again it appears that issues with severe and very severe patients are ignored. Most studies appear to be for mild patients with a few moderate patients thrown in. Severe or worse would require the study to be done in their own homes. So again how relevant is this to severe ME? If it is not relevant for severe ME, how can we be sure its relevant for mild ME and not erroneous?
From my own experience I am as active as I can be without crashing. It took many years for me to learn to pace myself, but mostly I can succeed now. Ummm, scratch that, I am a stubborn cuss and believed in the value of exercise for a very long time, it took way over a decade from the commencement of mild symptoms (less than 50% functional capacity) before I finally realized I was never going to make it work.
Sorry to hear that.
I remember reading (I think it was in a book by Dr. Anne Macintyre or Charles Shepherd) about somebody sprinting for a bus and "knocking themselves out" for 3 months.
I managed for five years undiagnosed - four years fairly highly functioning (full-time education, high level). How I think I survived was a bit fortuitous: I sprained my hamstring early in the (undiagnosed) illness (hamstring is muscle/tendon at back of leg). I was sports mad before the illness so after occasionally playing and finding it would flare up, I tried to nurse it, lots of stretches, etc. - I would "beat myself up" if I have started sprinting or even going fast as my hamstring would flair up. So by avoiding sprinting, I think it enabled me function at a high level (I even got my exercise up to a level of 6 mile cycle/1000m swimming every two days for a year (before relapsing) (swimming did involve 30 second break every 50m - I found I got out of breath). Anyway, my experience along with the anecdote in the book, etc. makes me thinking high intensity activities don't suit this illness.
My ergotherapist told me to do less when I'm consistently doing activities that I perceive to be of moderate intensity, such as cooking or brushing my teeth, or occasionally doing high intensity activities like cleaning.
Then two weeks later, my physiotherapist looked at my activity results from a SenseWear arm band (coincidentally taken during a crash brought on by briefly tensing muscles as a relaxation exercise), and said I'm not doing enough moderate intensity exercise when I was consistently doing brief light intensity activities (included in the same category as not moving at all) to avoid another crash.
Depending on how the next visits go, I'm thinking of locking them in a room together until they sort it out. Possibly with the relaxation therapist and psychologist thrown into the mix for good measure
& that would include me. i didn't know. Even now that I know, I still may do more than I "should", because I need to (to perform basic self-care, to be minimally responsible towards my family, and to better the situation of myself and my compatriots with ME & similarly neglected/maligned conditions; I refuse to sit by and allow the status quo to continue unchallenged).
Whoever thinks we are underperforming, fleeing the pressures of the work-a-day world, seeking secondary gains from illness, etc., has never carefully considered us without an a priori determination of what they would find.
Of course, we seem to be in a no-win situation: some say we are action-prone while then we supposedly under do it. Wessely (?) said something like 2 star ability, 5 star ambition - yet he was one of the people most pushing the CBT model largely based on us underdoing it.
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