Discussion in 'Latest ME/CFS Research' started by Dolphin, Sep 1, 2017.
Although the abstract does not make it clear, they found the grand total of two papers one of which was by the corresponding author.
So instead of asking pwME, or those responsible for their care, or the physicians treating them, they "googled" it - and this is research?
Wouldn't a graduate student be found guilty of plagiarizing under the current rules for this sort of thing?
They did a systematic review and found no one has done the basic research that someone should have done 30 years ago.
Like, when it rains things outside get wet
There is not good evidence that I can think of that too much rest is a significant problem for people with ME/CFS
More criticism of patients:
Minor point: I dislike that the word "recovery" is used when it is a rare outcome.
I don't find this very interesting. Some people could be passive because they are more severely affected. Also there is a big range in the group who could be described as "fluctuating active".
It is used in some Dutch CBT. The group who are said to be "fluctuating active" are allowed stabilise/reduce initially to find their baseline while those who are passive are told to simply increase from the start.
The study found that the three questionnaires/instruments were no good at accurately assigning people to either group based on the results of the actometers
Main results from the other study:
True, though one could always use more than one at the same time in the meantime.
True, though I imagine most patients with ME/CFS wouldn't be able to increase their activities for a sustained period.
It still bothers me that they never bother to ask patients what we think would be most reliable. It's still all about the convenience of the researchers.
Yep they're doing far too much talking, slap a couple of devices on PWME and healthy controls for a week, one on the ankle, one on the wrist and get some flipping data.
A fair number of the researchers, given actiometer data, would relegate it to supplemental figures, and report only on how the number made the patient feel.
Yes, it's interesting that the excuse of "it's too hard for the patients" has morphed into "we're too damned stupid to figure out how to use them."
You can also try a Google Site Search
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