Left out (Norwegian documentary on ME)

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!

https://www.youtube.com/watch?v=JEQjjYVZzxk

 

The documentary also gives insight in the RituxME study. The director Paul Schaathun followed the researchers for two years as well as some patients. The documentary was sent on national TV in Norway May 2018.

 

Thanks for posting. I had not seen this. Really well put together film.

 

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

 

Im sure there is! Curious myself

 

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

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

 

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.

 

really nice documentary!

 

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.

 

Was interesting to see them opening the results to the Rituximab study at 40 mins with a couple of significant responders to the placebo.

 

That scene is heartbreaking

 

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 !

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.

 

discussion here:
https://www.s4me.info/threads/rituximab-and-placebo-response.9704/

 

Thanks Sly!

 

Really great documentary!

 

Was just about to post a link for this. Fantastic documentary

 

This is great to share with interested frinds and family

 

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.

 

I watched it the other day and also thought it was a fantastic documentary and showed the impact of ME so well. It was also great to see such dedicated doctors studying this illness.