Discussion in 'Latest ME/CFS Research' started by Dolphin, Mar 24, 2012.
*I gave each sentence its own paragraph
Is it the wording or I don't get the point of this?
What were they trying to prove?
I think it's saying we aren't fakers or (deliberately?) exaggerating symptoms.
Isn't it consider discrimination to do such a study?
Thanks, Dolphin, that's useful.
Yes, that's it. A Dutch study I recall tried to claim otherwise but I wasn't convinced by its methodology.
Shocking! On both counts
Do you mean van der Werf et al 2000? (http://www.ncbi.nlm.nih.gov/pubmed/10910092) : "Compared with the MS group (13%), a larger proportion of the matched CFS group (30%) obtained scores indicative of reduced effort."
I have read it and have some notes on it questioning it so I think that might be it.
As I may have said before, a useful way to get a lot of these Dutch psychological papers is to look for a PhD involving them. The full text of this is in the Van der Werf PhD: http://dare.ubn.kun.nl/bitstream/2066/19231/1/19231_deteancoo.pdf (link from: http://dare.ubn.kun.nl/handle/2066/19231)
thanks, Dolphin. I saw a write-up on this at ProHealth, but when I searched by title I didn't find an abstract or anything (and didn't even find this page from the search engine, which is unusual, but I suppose I should have tried more than one search engine). So glad to find this. :Retro smile:
I don't understand how a fifty minute functional test can detect CFS. I am pretty sick but I can function somewhat mentally and physically for 50 minutes if forced to do so. I still have two arms and two legs, I can move around for periods and I can think for periods of time. I think this test would be worthless for me. CFS is so much more complicated that what someone can do in an hour. I don't understand why this is important research for CFS.
I am also noting that a majority of the CFS studies posted in this section regard CBT, GET, pysch babble. Anyone that really has this disease knows these things are virtually worthless, so is there a point? Sorry if this sounds aggressive but it is frustrating to see all these worthless studies.
pine I quite agree - many years myself unable to move very much nor think, recall, locked into a half world - you fight all this and the psychobabblers bent on measuring this or that when the problem of the day is making the bathroom, keeping clean or remembering to eat. No room for CBT, GET.
Just because they're posted, doesn't mean most or even the majority of the posters agree with them. Papers are analysed indepth. Some people go on to write letters to editors challenging the papers. Few people in the whole world do this. Some of us think this is an important activity.
Unfortunately there aren't lots of biological studies published in the field. But there are certainly plenty of people, probably most people, interested in those findings also.
Nobody is forced to read the threads they are not interested in.
Lots of people follow stuff I'm not interested in. However, I wouldn't consider it good manners to go into other subforums or other forums on other subjects and ask individuals publicly why they spend so much time on something I'm less interested in or choose to spend less time on (unless it was having some effect on me).
We don't live in a police state where one is restricted in how much one is allowed read on particularly topics.
A lot of us are stuck dealing with healthcare systems where these piss-poor studies are considered the authority on ME/CFS. Knowing what they are saying makes it a lot easier to cope, and allows us to respond intelligently to accusations of depression, malingering, deconditioning, conversion disorder, etc.
These papers generate quite a bit of discussion here, almost all of it aimed at dissecting the protocols used and the interpretations of results. Thanks to reading those analyses, I could probably list multiple problems with the most prominent psych research papers off the top of my head. This information also helps in dealing with family members that read the latest article about CBT curing ME/CFS, not to mention insidious self-doubt.
I also find it fun, maybe even therapeutic, to read and join in with the trouncing of these papers
The standard neuropsych battery in the USA according to a presentation at CFSAC (I think 2010?) goes for three hours. It is highly specific and heavily focussed on processing delays. This paper was not testing CFS or ME; they were testing the validity of patient claims. Its a lie detector test. Bye, Alex
Yes, the point of this paper, from the abstract at least, is not to point out what the deficits in CFS are but rather that the deficits displayed by CFS patients are not exaggerated or done intentionally to deceive. It's similar to the exercise studies done by the Pacific Fatigue Lab using certain biological parameters to prove that subjects were exercising to their maximum ability yet were still doing poorly compared to healthy controls. ME/CFS patients get accused all the time by family, friends, healthcare workers, society, etc. that they are "faking" or "exaggerating" their symptoms and just "not trying hard enough."
Such a paper can be used to counter these claims for example when one is trying to obtain financial/ health insurance assistance through the government (e.g. in the US, Medicare and SSDI). Thank your lucky stars that these researchers were concerned enough to investigate this topic.
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