Study/article about patient rated self improvement but still sick!?

[xrayspex]

Fellow cfs-ers and frequenters of PR, help me out.......what thread did I read, yesterday I think it was, about a study where the CBT had brainwashed essentially the CFs patient into rating themselves as "recovered" but in reality they weren't........I need that to give to an MD who sent me this study:
http://www.familypracticenews.com/article/S0300-7073(10)70850-1/abstract
Volume 40, Issue 13, Pages 52-53 (August 2010)


Fibromyalgia: Tailored Tx Proved Successful

BRUCE JANCIN


ROME A tailored combination of cognitive-behavioral therapy and physical exercise training has achieved the largest treatment benefit ever reported for fibromyalgia in a randomized, placebo-controlled clinical trial.

 

[Mark]

I think it's this link on 3 dutch studies you're referring to:

http://www.forums.aboutmecfs.org/sh...crease-activity-levels-in-3-Dutch-CFS-studies

Being CBT studies, insane and illogical conclusions are still present in the abstracts, but the actual evidence demonstrates clearly what it obvious to so many: in the study they found the normal improvements in "fatigue" as reported by patients trained to pretend they are OK when they are not; however the measurable actometer data showed that their activity levels had not increased.

From this they conclude that "The effect of CBT on fatigue in CFS is not mediated by a persistent increase in physical activity".

You have to laugh or else you'd cry.

Anyway, since the reasons behind these results, and the logic of what is really going on, should be obvious to anyone with an ounce of common sense, I agree with you xrayspex (assuming this is the study you are referring to) that this actual data is some of the most vital evidence I've ever seen rebutting CBT for CFS.

I really think we should make much more of it, as I've discussed with a couple of people.

The results show that
(a) If you train people to say "I'm fine thank you" whenever anybody asks how they are, then a few months later a significant proportion of them answer "I'm fine thank you" when offered questionnaires asking if they're still fatigued.
(b) Actual measurements of these patients' activity levels prove that nothing has really changed.

The most interesting angle is all the previous CBT studies that started out by measuring actometer data and then mysteriously gave up on using that data halfway through the studies...questions have to be raised regarding how scientific or indeed how ethical it is to throw away the results that don't suit your own theories.

So I hope people will follow up on this and post some more details and references about all these studies because it does seem to me that, with this data, there is now a very strong case to be made in support of the bleedin' obvious...

 

[Mark]

This page of Tom's should be handy too:

http://sacfs.asn.au/news/2009/09/09_20_adverse_reactions_to_get.htm

Quick scan shows results finding that more patients found CBT harmful than found it helpful, which is typical of similar patient surveys I've seen in the past.

 

[xrayspex]

Mark
thank you, those are helpful, can use those too, as well as the points you articulately made.

I would also like to find the thread that was still dated with comments yesterday or sunday, some people made similar comments in the thread of what you wrote above, they get confused and report they are ok when they really aren't.

I am confused on my why my PC guy is sending me this article, I have cfs and fm dx both but I don't really see myself as FM and don't know why he sees me more that way than CFS, I think I function higher than some of his other typical CFS folks so he doesn't put me in that category. I am real vigilant about my pacing and I also was in tip top shape when I got afflicted 21 years ago so I dont know if thats why he thinks I am higher functioning but that vigilance I have about my boundaries is also something they use against you in studies and in the one he sent me like its an anxiety fearfulness and not really needed.......sigh, how can you prove your subjective state is based on objectivity........I just got my frickin' xmrv test back positive, what more can I do........? i sure hope him sending off that study to me was before I told him I was XMRV pos otherwise i can tell you that docs working in the mainstream, well they are not getting the message about xmrv or the studies are not being reported accurately to them and the meaning of the studies........its very discouraging

have to go off line for awhile but will check back later

peace
xrs

 

[xrayspex]

I cannot find it! its driving me nuts, anyone remember that, thought it had posts yesterday, might be the study Mark refers to up there but some people from here wrote in the thread about the phenomena of reporting you feel bad because of the psychological conditioning or you never knew or forgot what its really like to feel normal, they were reported they were "recovered" when they were not.

 

[xrayspex]

YAY!

http://www.forums.aboutmecfs.org/sh...Bell-2010)-(inc-follow-up-of-pediatric-cohort)

 

[*GG*]

It's very easy to lead patients to report themselves better, even when they're not doing CBT. I find this happening with the CFS researcher I am seeing.

I also read some of the "CFS recovery" stories you can find if you Google. One of them says she's 70% recovered. Then she lists her activities for the day. She practically does nothing! If you're around 10%, lower your expectations of what is healthy by 90% and you will reach recovery!

I also wonder if this is a general thing with CBT as I have a friend who was abusive claim she has been transformed by CBT, but as far as I can tell she is just as abusive if not more than before. She just thinks she's better.

Sounds reasonable to me, we adjust to our new reality(s)!