Left out (Norwegian documentary on ME)

Marky

Marky

Senior Member (Voting Rights)
This magnificent documentary on ME is now available on Youtube with english subtitles. Watch it, and send it to whoever needs to see what ME is.

Edit: Please share this documentary! I think its one of the few that can actually help people understand us!

 
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InitialConditions said:
Would be interested to know how the placebo response rate compares with that in other studies. Is there anyway of comparing this?
Click to expand...

This paper is old but would have collated responses in papers published before it was finalised:

https://pdfs.semanticscholar.org/7785/a5598c128500213a46969883880c6312ad40.pdf

Psychosom Med. 2005 Mar-Apr;67(2):301-13.
The placebo response in the treatment of chronic fatigue syndrome: a systematic review and meta-analysis.
Cho HJ1, Hotopf M, Wessely S.
Author information

Abstract
OBJECTIVE:
The placebo response is conventionally asserted to be high in chronic fatigue syndrome (CFS) because of the latter's subjective nature and obscure pathogenesis, but no systematic review of placebo responses has been undertaken. We report such a study. Patient expectation is known to be important in the placebo response. It is also known that CFS patients attending specialist clinics often have strong physical attributions regarding causation and hence skepticism about psychological or psychiatric interventions. If so, the placebo response in CFS may be influenced by the type of intervention according to its perceived rationale. We aimed to estimate the summary placebo response in clinical trials of CFS and to determine whether intervention type influences the placebo response in CFS.

METHODS:
We searched Medline, Embase, Cochrane Library, PsychInfo, and the references of the identified articles, and contacted experts for controlled trials (randomized or nonrandomized) of any intervention on CFS patients reporting the placebo response as a clinical improvement in physical or general outcomes. Data were extracted from the articles and validity assessment conducted by one reviewer and checked by a second. Meta-analysis and metaregression were performed.

RESULTS:
The pooled placebo response was 19.6% (95% confidence interval, 15.4-23.7), lower than predicted and lower than in some other medical conditions. The meta-regression revealed that intervention type significantly contributed to the heterogeneity of placebo response (p = .03).

CONCLUSION:
In contrast with the conventional wisdom, the placebo response in CFS is low. Psychological-psychiatric interventions were shown to have a lower placebo response, perhaps linked to patient expectations.

PMID:
15784798
DOI:
10.1097/01.psy.0000156969.76986.e0
Click to expand...
 
Dolphin said:
This paper is old but would have collated responses in papers published before it was finalised:

https://pdfs.semanticscholar.org/7785/a5598c128500213a46969883880c6312ad40.pdf
Click to expand...
Not that I would put any credibility to the actual numbers (with freaking decimal precision to boot, seriously?) but at least those can be compared to one another, even if flawed as absolute values. That the "placebo" response is lower is not surprising given the severity of impairment. Maybe that's why there ended up being so much obsessive dependency on questionnaires, it's the only way to create a placebo "effect". And even at that it failed. So much for "conventional wisdom", i.e. what Wessely believes.

It's kind of funny that he puts this bit about skepticism over psychological explanations, when in truth most of us never gave a single second of thought to this other then when people try to impose it on us and bizarrely insist so. Completely irrelevant comment. I do not ignore or dispute astrological relevance of my illness because I am skeptical of it, I literally never even considered it as being applicable in the slightest and apply the same to psychological impact. It's simply not relevant. Wessely always frames things according to his own perspective when talking about his patients' perception. Not often, literally always. It's... weird.
 
This is very good!

If I hadn't had massive respect for the ritux research team already I would have developed it after watching this. A great example of taking both the suffering of patients and the scientific method seriously. Empathy and integrity. Thank you.

Also impressed by how the Norwegians manage to make documentaries where they follow people for several years, it adds depth to the story.
 
I think it's a brilliant video with its mix of excellent science in action and showing how sick people really are, and the impact on them of trying to do any 'normal' activities.

The Rituximab unblinding scene was amazing. The honesty and integrity of the researchers and their genuine disappointment when it showed there was no between group differences was a mix of sad and inspiring - showing how much they cared about the patients, and that they were still willing for it to be shown in the film, even though their moment of triumph turned to dust.

I couldn't help thinking of the contrast between this scene and the scenes I imagine when the PACE trial researchers realised that wasn't going to be the big success they had planned, and they responded so dishonestly by lowering the outcome thresholds to get the result they wanted.

Well done to all involved in making the film.
 
This is a brilliant film, so well made.

I second everything that @Trish just said and would try to rephrase it in my own words but too exhausted to do so and Trish said it so well! Just wanted to add my voice to the praise for the film and the science, just in case anyone involved sees this :emoji_clap::emoji_clap::emoji_clap: !

I have a lot of respect for Fluge and Mella et al for their dedication to the science. I'm sorry for them that they didn't get the outcome they wanted, it seems a shame that scientists only get celebrated if you get a positive result. I'm grateful to them for taking an interest and doing the trial.

I hope that future research will shed some light on why some people seemed to respond, it may be placebo or they could be a small sub-group I guess.
 
The stunning scenery and research coverage managed to make the patient narratives less depressing so the film can pack punches whilst being widely watchable and seeing the research in the context of patients waiting on it was very powerful. I gave hundreds to that study and likewise waited on it, primarily because it was all there was treatment wise, And don’t regret it because I find the researchers very deserving in professionalism and compassion.


My own teens and deterioTion had similarities to Emilie, watching that painful half life , so blatantly cut off from peers zinging with energy was poignant. And then emilies health just slipping away to nothing was Also powerfully captured due to it covering years as ravn said. I wish we could get this viewed by all those who need educating re. Urgency For research and it not being benign fatigue etc such as at the CMRC conference, as it has a strong research focus maybe it could be ?

I did think the battery graphic at the start was very powerful and wondered if the film makers would allow that minute to be extracted and used for general explanatory awareness. Ive seen in m.s little animated graphics or videos for the public to better understand, I think that this Could be useful.
 
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