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CFS is the result of "the nocebo effect"

Cheshire

Senior Member
Messages
1,129
I just came across this book

The Nocebo Effect: Overdiagnosis and Its Costs
Stewart Justman (august 2005)

Here is a particularly impressive extract (p. 96)

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I just had a rapid look at the rest of the book, and it's not better.

https://books.google.fr/books?id=dGBOCgAAQBAJ&pg=PA41&lpg=PA41&dq=The Nocebo Effect Overdiagnosis and Its Costs Stewart Justman chronic fatigue syndrom&source=bl&ots=Spp3ZBQe-i&sig=6J-2vAAjraG_sKiE1ZMPbeWUE48&hl=fr&sa=X&ved=0CCQQ6AEwAWoVChMIpe21jZPJyAIVBtQaCh0e7gzH#v=onepage&q=chronic fatigue syndrome&f=false

Enjoy!
 
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A.B.

Senior Member
Messages
3,780
Can a diagnostic label intensify symptoms? Or can a diagnosis get the patient to think more about their symptoms and report them more often? Or are doctors seeing a phenomenon that isn't real but merely the result of their own biases and expectations?

And who exactly is harmed by the diagnosis? Could it be a particular branch of psychiatry that fears medical explanations could take their monopoly over some patient groups away?
 
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sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
Just out, too. And only £68 in hardback. That's Christmas taken care of, then.

Edit: cancel that. Just thought, if I read this book can I catch overdiagnosis?

First six years I was ill I refused even to consider that I was ill. I avoided doctors in case they did give me a diagnosis. Tried to carry on as normal, started a business, kept trying to work ... and ended up housebound. But think how much worse I would have been if I'd had a diagnosis!! Lucky escape there.
 

user9876

Senior Member
Messages
4,556
Can a diagnostic label intensify symptoms? Or can a diagnosis get the patient to think more about their symptoms and report them more often? Or are doctors seeing a phenomenon that isn't real but merely the result of their own biases and expectations?

And who exactly is harmed by the diagnosis? Could it be a particular branch of psychiatry that fears medical explanations could take their monopoly over some patient groups away?

There is another thing where giving a diagnosis along with questions or an explanation of symptoms can give patients a language to express their symptoms which would otherwise go unsubscribed or lumped into a general illness feeling which gets translated in a doctors description as 'fatigue'.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Given the that the book is mostly speculation without high quality studies to back it up, one could argue that if the author is claiming it is more than a hypothesis, then he must himself be a victim of circular thinking.

Oh and apart from SW, he also cites Showalter's Hystories extensively (another book you should avoid reading).

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3767217/
Yale J Biol Med. 2013 Sep; 86(3): 323–331.
Published online 2013 Sep 20.
PMCID: PMC3767217
Focus: Research and Clinical Ethics
Deceit and Transparency in Placebo Research
Stewart Justman
Abstract
Studies designed to elicit the full strength of the placebo effect differ from those in which the placebo effect represents a nuisance factor to be accounted for in order to establish the efficacy of a treatment. In the latter, informed consent is the rule; in the first, while consent may be informed in some narrow sense of the word, deception is common. However, the trickery of placebo experimentation goes beyond straightforward lies to include the use of crafty ambiguities, half-truths, and deliberate omissions in scripts read to the subjects of these studies. As words come to resemble therapeutic agents in their own right, it is only to be expected that researchers would methodically exploit verbal effects to evoke the responses they are looking for. Even experiments in which placebo is disclosed as placebo have used language in leading and misleading ways. Such studies are conducted in the hope of yielding results that might translate into clinical practice, but it should be noted that good clinical practice has a placebo value of its own — that is, confers a benefit over and beyond the specific effects of treatments — even if nothing like a sugar pill is administered.


See also
http://jme.bmj.com/content/early/2012/12/17/medethics-2012-101057
J Med Ethics doi:10.1136/medethics-2012-101057

Placebo: the lie that comes true?
  1. Stewart Justman
Abstract
Over the decades of experimentation on the placebo effect, it has become clear that it is driven largely by expectation, and that strong expectations of efficacy are more likely to give rise to the experience of benefit. No wonder the placebo effect has come to resemble a self-fulfilling prophecy. However, this resemblance is considerably exaggerated. The placebo effect does not work as strongly as it is advertised to do in some efforts to elicit it. Half-truths about the placebo effect are now in circulation, reinforced by a number of other equivocations that it seems to attract. As the deceptive use of placebos has fallen into discredit, the use of half-truths and exaggerations—neither of which is technically a deception—becomes an ever more inviting possibility. However, there are risks and costs associated with the half-truth that the doctor possesses the power to make his or her words come true by the alchemy of the placebo effect.

How about: the 'placebo effect' is just a consequence of several biases that affect the reporting of symptoms, yet has no effect on the underlying disease or injury. This is why we have placebo-controlled trials. This is why measures of functioning, activity, and biomarkers are so important.
See also, meta review of placebos: http://www.cochrane.org/CD003974/COMMUN_placebo-interventions-for-all-clinical-conditions

Side note:
http://www.cas.umt.edu/hs/faculty-list/faculty-details.php?id=639
This guy isn't too popular with his students:
http://www.ratemyprofessors.com/ShowRatings.jsp?tid=821500
 
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John Mac

Senior Member
Messages
321
Location
Liverpool UK

beaker

ME/cfs 1986
Messages
773
Location
USA
Of course, the IOM report thinks it is grossly under diagnosed. I think they hav e mote cred. then this person.
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I could only see a few extracts. But actually I have a (little) bit of sympathy with what is written about the over-pathologising of normal human experience.

Eg the rush to diagnose someone as 'depressed' when they are just justifiably sad. And as a consequence the patient is given drugs that change brain function when they may just need someone to talk to and reassurance. The author points out that once given a diagnosis of depression and having recovered, you are much more likely to be given another diagnosis of depression later. Perhaps because you have a tendency to become depressed, but perhaps also because the GP has seen your history and is biased when evaluating later symptoms.

Or, as another example, the 'oppositional defiance' label for kids that are misbehaving because they are having a really difficult childhood. The diagnostic label pathologises the child and justifies sedating drugs instead of work to fix their environment.

And those abstracts given above - actually they make some valid points. Think about CBT in the PACE trial.
As words come to resemble therapeutic agents in their own right, it is only to be expected that researchers would methodically exploit verbal effects to evoke the responses they are looking for.

However, there are risks and costs associated with the half-truth that the doctor possesses the power to make his or her words come true by the alchemy of the placebo effect.

Obviously though, he doesn't know much about ME/CFS.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I could only see a few extracts. But actually I have a (little) bit of sympathy with what is written about the over-pathologising of normal human experience.

Eg the rush to diagnose someone as 'depressed' when they are just justifiably sad. And as a consequence the patient is given drugs that change brain function when they may just need someone to talk to and reassurance. The author points out that once given a diagnosis of depression and having recovered, you are much more likely to be given another diagnosis of depression later. Perhaps because you have a tendency to become depressed, but perhaps also because the GP has seen your history and is biased when evaluating later symptoms.

Of course. The ethical way (based on the statistics/distribution of risks vs benefit effects of interventions) is to under-treat mildly effected patients and over-treat severe patients.

He is assuming (without any evidence) that the patients who are showing up and getting diagnosis of clinical depression, CFS, Fibromyalgia, PTSD etc are not really impaired, but are simply making exaggerated claims about mild symptoms and day to day experiences.

That is where I take exception - the idea that many/most of these patients are not debilitated by these illnesses.

And those abstracts given above - actually they make some valid points. Think about CBT in the PACE trial.

He is claiming that the strength of the placebo effect depends on how you do it. He is still claiming that it has important clinical effects and is worthwhile to be used in clinical practise. (rather than merely biases in reporting symptoms due to change in cognitions)
 
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me/cfs 27931

Guest
Messages
1,294
The Nocebo Effect, Placebo’s Evil Twin
Because of over screening and the diagnosis of contrived or harmless ills, the so-called nocebo effect is wreaking havoc on otherwise healthy people.


It's all in your head

In The Nocebo Effect, American essayist Stewart Justman writes about the devastating effects of nocebo in diagnoses as varying as anorexia, chronic fatigue syndrome, depression, dissociative identity disorder, hyperactivity, and cancers of the breast and prostate.


http://www.worldcrunch.com/tech-science/the-nocebo-effect-placebo-s-evil-twin/c4s19930/