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'I knew they were sugar pills but I felt fantastic'. The rise of open-label placebos

SamanthaJ

Senior Member
Messages
219
My first thought - "Why does the Guardian keep publishing this stuff?" Then you see some of the comments - people lap it up, fancying themselves knowledgeable, being fashionably sceptical about other people's health problems.
 
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ladycatlover

Senior Member
Messages
203
Location
Liverpool, UK
Please don't be angry with the messenger (not that anyone has been nasty to me in any way) - I think we really need to know about this Bad Science. :rolleyes: Hopefully it will come over to most people as being weird and useless. But I do believe we need to know what's in mainstream newspapers. OK, lots in UK wouldn't count Grauniad as being mainstream, :oops: :lol: but I'm sure you know what I mean! :rofl:
 

SamanthaJ

Senior Member
Messages
219
Please don't be angry with the messenger (not that anyone has been nasty to me in any way) - I think we really need to know about this Bad Science. :rolleyes: Hopefully it will come over to most people as being weird and useless. But I do believe we need to know what's in mainstream newspapers. OK, lots in UK wouldn't count Grauniad as being mainstream, :oops: :lol: but I'm sure you know what I mean! :rofl:
Thank you for posting, we do need to know what people around us are reading about ME and related conditions. It's more that the Guardian disappoints me when they are capable of better, and are supportive of sick/disabled people in other contexts, such as benefit cuts. It's frustrating that some of their science/medical coverage seems to play on prejudices. We do need to keep posting this stuff, thank you for doing so.
 
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Please don't be angry with the messenger (not that anyone has been nasty to me in any way) - I think we really need to know about this Bad Science. :rolleyes: Hopefully it will come over to most people as being weird and useless. But I do believe we need to know what's in mainstream newspapers. OK, lots in UK wouldn't count Grauniad as being mainstream, :oops: :lol: but I'm sure you know what I mean! :rofl:
Knowing what misinformation/bad science is out there is half the battle. You probably won't get many likes on your post but hopefully people will realise that in posting you aren't necessarily supporting the content. A number of us tend to comment "Not a recommendation" or similar when posting things like this so as to be clear.
 

Dmitri

Senior Member
Messages
219
Location
NYC
When I get IBS flares, eating something sweet can slightly calm the symptoms. Probably from the effects of sugar stimulating digestion and not attributable to any mind-body woo.
 

RogerBlack

Senior Member
Messages
902
Yeah - the Guardian.
https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis
Which published this wonderful piece.
similar hate campaign was triggered by a study published in the Lancet earlier this year. It suggested that a psychological technique known as cognitive behavioural therapy could help some sufferers. This produced furious attacks on the scientists involved, including Michael Sharpe, professor of psychological medicine at Oxford University. He had already been stalked by one woman who was subsequently found to be carrying a knife at one of his lectures.
"The tragedy is that this tiny group of activists are driving young scientists from working in the field," said Sharpe. "In the end, these campaigns are only going to harm patients."
That is still causing problems (wikipedia simon W).
 

A.B.

Senior Member
Messages
3,780
The first was led by Professor Ted Kaptchuk, of Harvard Medical School, who gave 80 IBS patients, including Buonanno either no treatment or open-label placebo pills. He found those who took placebos for three weeks experienced greater improvements in symptoms, including less severe pain. Sadly for Buonanno, when the study ended she was unable to obtain further effective placebos and her symptoms returned.

Kaptchuck concluded that placebos can improve symptoms even without deception, in other words even when patients are told that they will be given a placebo. The problem is that patients were told beforehand that placebos trigger a powerful healing effect, so the researchers are still creating the expectation of improvement in the patients, who will then self-report symptoms accordingly. The deception is still there but in a different form.

There isn't much reason to believe that healing effects are being recorded in placebo studies like this one when the methodology introduces substantial positive reporting biases.

In better designed studies with objective measures of illness and health, placebos don't work.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
In better designed studies with objective measures of illness and health, placebos don't work.

Maybe you are not aware, but placebos do work to a certain degree. That is the very reason why they are used in randomized double blind clinical trials in the first place. Them moment a new pharmaceutical has stronger effects than placebo, it's considered that much more effective.

And it's even getting stronger in the last decades, more so in the US :

Increasing placebo responses over time in U.S. clinical trials of neuropathic pain.



Or the small differences in effects from drugs compared to placebo for example in depression:

wps0014-0294-f1.jpg

Mean percentage symptom reduction in unblinded and blinded treatment arms from published depression trials compared to data from pivotal registration depression trials as reported by the U.S. Food and Drug Administration (FDA) (adapted from 13). Striped bars represent unblinded trial arms; black bars represent blinded trial arms; the grey bar represents placebo control arms from published non-registration trials; checkered bars represent data from pivotal registration trials. The mean percentage symptom reduction was weighted by the number of assigned patients. Error bars represent 95% confidence intervals
 
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A.B.

Senior Member
Messages
3,780
Maybe you are not aware, but placebos do work to a certain degree. That is the very reason why they are used in randomized double blind clinical trials in the first place. Them moment a new pharmaceutical has stronger effects than placebo, it's considered that much more effective.

And it's even getting stronger in the last decades, more so in the US :

Placebos are used to measure cumulative impact of the many non-treatment effects that influence results so that you can tell whether the treatment has any effect. Many illnesses tend to improve on their own over time. Without a control group, almost any treatment would falsely appear to be effective. Patients also tend to rate themselves as improved after being given treatment regardless of whether it's working or not. So placebos are used because they're ineffective (if a study accidentally includes a placebo that is not inert then it's flawed).
 

pamojja

Senior Member
Messages
2,384
Location
Austria
So placebos are used because they're ineffective (if a study accidentally includes a placebo that is not inert then it's flawed).

Look at above graph. FDA placebo was about 30% effective (in subjective wellbeing, which is the aim of anti-depressants), FDA drugs was about 40% effective, so the drugs in the final analysis could be marketed as 10% effective in absolute percentage, but they would probably market it as 25% more effective in relative numbers compared to placebo. You are so right that placebo is not just one, but actually many moroe unknown confounders. Which in this graph with those on the waiting list obviously missed, and ended up with only about 30% of effects compared to placebo.

So about 25% effect just while waiting (..anticipation of treatment), an other 50% for an inert substance (placebo), and then the actual drug with 25% additional effects.

To be honest, if I suffered depression - in the known of the long-term worse outcome with drug-treatment - I rather would do with anticipation and an inert substance reaping already 3/4 of the effect the drugs could give. Without any bad side-effects or worse long-term outcome. :)
 

Snowdrop

Rebel without a biscuit
Messages
2,933
Maybe you are not aware, but placebos do work to a certain degree.

There's a difference between reporting feeling better and actual healing taking place. It's no surprise that we can con ourselves into feeling better for a time.

Over the long term I would expect it cannot hold.

I wouldn't call that placebo efficacy so much as placebo temporary distraction from sickness symptoms.
 

pamojja

Senior Member
Messages
2,384
Location
Austria
So about 25% effect just while waiting (..anticipation of treatment), an other 50% for an inert substance (placebo), and then the actual drug with 25% additional effects.

I wouldn't call that placebo efficacy so much as placebo temporary distraction from sickness symptoms.

To you have any scientific source for claiming that? For example in the case of antidepressants, the 10% drug effect being more 'real', but the 30% placebo effect being 'temporary distraction' only, ie. less real? Dispite actually being 3 times as strong?