Physical activity intensity but not sedentary activity is reduced in CFS (Newton, 11)

[WillowJ]

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.

yes, their models are not internally consistent.

but I'm not asking to be an astronaut or a paratrooper, or a judge, or any such. :Retro smile: I would like to be able to, you know, go to work and/or school like a normal person, cook dinner (standing up the entire time and doing dishes after), go hiking, stuff like that.

 

[WillowJ]

although, I think some here have 5-star ability, not counting the illness, but the point is: disillusionment cannot cause physical disability; there is no mechanism available for that and they have failed even to produce a passably good model for how this might work (I say this for the world wide web), and most of us would be thrilled with 2- or 3- star function as compared to what we have now...

ETA: obviously I'm not agreeing anyone is/was disillusioned just that the model is pointless, besides being inconsistent

 

[Snow Leopard]

although, I think some here have 5-star ability, not counting the illness, but the point is: disillusionment cannot cause physical disability; there is no mechanism available for that and they have failed even to produce a passably good model for how this might work (I say this for the world wide web), and most of us would be thrilled with 2- or 3- star function as compared to what we have now...

I had 5-star ability and 4-star expectations.

To me it shows there is a clear self-selection bias with regards to the type of people who show up for treatment - higher achieving people are more likely to show up. In the case of adolescents, it is the parental ambitions that are the biasing factor.

Reminds me of the following studies:
http://www.kcl.ac.uk/content/1/c6/01/47/68/Godfrey2009IQinchildrenwithCFS.pdf
Unfortunately the IQ scales of both the patients and controls seems to be skewed (both well above average) and there was no prospective IQ test (before CFS) so we can't conclude that it is the parental expectations themselves are skewed, merely that adolescents in these clinics are more likely to have parents with higher expectations than the norm.

The following study found 17% of adolescents (with CFS) had IQs over 120 and 47% between 100-120. http://www.cfids-cab.org/rc/Sankey.pdf

 

[Simon]

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:
http://www.ncbi.nlm.nih.gov/pubmed/22032215

Worth noting one other study, Gallagher 2005 (n=41) that also used actometers to compare CFS patients wtih sedentary(ish) controls and found - contrary to their hypothesis - CFS patients spent no more time inactive than sedentary controls.

 

[Firestormm]

What's a sedentary control please? I mean what's the benchmark of sedentary, to whom we are being compared to. Thanks

 

[Simon]

What's a sedentary control please? I mean what's the benchmark of sedentary, to whom we are being compared to. Thanks

A sedentary control is whatever the researchers say it is . This varies a lot between studies, but in the case of the Gallagher study above:

The controls were healthy but sedentary
hospital staff responding to advertisements about the study.
The criteria for sedentary controls were that they thought
they ought to take more exercise, they performed moderate
exercise of 20 min less often than once per week, and they
never/rarely engaged in exercise long enough to work up a
sweat, get the heart pumping or get out of breath

 

[Firestormm]

Lol. 'sedentary hospital staff'. Well there's a (something or other) of terminology don't you think? Jees How can anyone who is able to work be considered 'sedentary' when comparing them to patients with ME? Bloody hell.

Of course you rarely see a hospital worker running for the needs of a patient do you? Working up a sweat? What a joke.

I despair... but thanks for that Simon. First laugh of the day

 

[biophile]

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.

Just like his/their understanding on the characteristics and pathophysiology of ME/CFS?

 

[Dolphin]

What's a sedentary control please? I mean what's the benchmark of sedentary, to whom we are being compared to. Thanks

In this case:

One hundred
and seven age-, gender- and BMI-matched
control individuals (n = 107) who did not take part
in regular exercise (<30 min exercise three times per
week) and did not have CFS were also recruited.

 

[Tito]

The following study found 17% of adolescents (with CFS) had IQs over 120 and 47% between 100-120. http://www.cfids-cab.org/rc/Sankey.pdf

The most revealing part of the study to me is:
"although 21 (75%) regarded themselves as fully recovered, they described symptom persistence of fatigue and headache, depression and sleep disturbance."

 

[WillowJ]

A sedentary control is whatever the researchers say it is .

lol

 

[Firestormm]

More seriously, I was wondering what might be considered a more realistic control and comparison for studies such as these but couldn't come up with anything. I guess it's not only the way in which you recruit and measure for a comparison but also the methods by which you compare that affect the results.

 

[WillowJ]

here's one (seems unpublished) which investigated whether "intellectual over-demanding at school" could cause CFS and found instead that CFS affects intellectual performance:
http://igitur-archive.library.uu.nl/student-theses/2012-0810-200452/UUindex.html

 

[PhoenixDown]

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.

What's the difference between depression & idiopathic fatigue? There's no test for depression so...

 

[Esther12]

here's one (seems unpublished) which investigated whether "intellectual over-demanding at school" could cause CFS and found instead that CFS affects intellectual performance:
http://igitur-archive.library.uu.nl/student-theses/2012-0810-200452/UUindex.html

Ta Willow. How did you find that? It would be nice to see the paper.

 

[alex3619]

The most revealing part of the study to me is:
"although 21 (75%) regarded themselves as fully recovered, they described symptom persistence of fatigue and headache, depression and sleep disturbance."

Hi Tito, does this mean that "recovery" is defined as no longer complaining of being ill? You can get that with brainwashing too ... oh, wait, isn't CBT brainwashing? Teens and children are also very vulnerable to pressure from authoritative figures. Bye, Alex

 

[alex3619]

here's one (seems unpublished) which investigated whether "intellectual over-demanding at school" could cause CFS and found instead that CFS affects intellectual performance:
http://igitur-archive.library.uu.nl/student-theses/2012-0810-200452/UUindex.html

Hi WillowJ, the full text is no longer available. Bye, Alex

 

[alex3619]

What's the difference between depression & idiopathic fatigue? There's no test for depression so...

Hi PhoenixDown, Komaroff developed a test with high sensitivity and specificity for distinguishing between CFS and depression. Its just not been replicated or used. Bye, Alex

 

[justinreilly]

More garbage. What a surprise.

 

[taniaaust1]

The most revealing part of the study to me is:
"although 21 (75%) regarded themselves as fully recovered, they described symptom persistence of fatigue and headache, depression and sleep disturbance."

Maybe my sister who's in early 30s was in that study (only kidding). but she likes to tell me how much better she's doing or that she's all good again (thou she's daily taking so many things and still trialing stuff) and she cant even do gym class.

Its about time studies went by EVIDENCE of if someone is better or not based on how much they are ACTUALLY ABLE TO DO .. not on what fantasies people have. It would be so easy for studies just to have a simple checklist of all things a normal person could do eg would you be able to do aerobics classes at a gym? Do you or could you work full time?
and have people check the boxes to find out if they truely are fully recovered or not.. and yeah also ask them simple quesitons on symptoms.

There needs to be CFS research standards put scientifically in place for studies to be forced to follow in what classifies as an actual recovered ME/CFS patient. This is something our big orgs should push for... some standards in ME/CFS research. Maybe ME/CFS patients should be pushing our orgs to be trying to do something about this...