Left out (Norwegian documentary on ME)

It is worrying that the "placebo" was not recognised as a treatment.
Many people with ME report significant relief from saline infusions.
The study appears to have made no allowance for the treatment effect of the so-called placebo?

That does not detract from the tremendous integrity, compassion and commitment of the researchers, nor the power of the documentary.
 
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I am glad these researchers are now in the process of another study where a group of ME patients will be wearing an activity tracking device for a period of time without receiving any treatment interventions or placebo.

I don't think this has been done before? It will be interesting to see if there are large fluctuations, and whether this ought to be taken into account in future clinical trials.
 
Penelope McMillan said:
Many people with ME report significant relief from saline infusions.
The study appears to have made no allowance for the treatment effect of the so-called placebo?
Click to expand...

Don't those self-reported benefits only last a very short amount of time though?

The director mentions in the Youtube comments "[with] placebo responses lasting more than 30 weeks, it's very difficult to suggest that a few saline infusions would have given this long lasting improvement."
 
Penelope McMillan said:
It is worrying that the "placebo" was not recognised as a treatment.
Many people with ME report significant relief from saline infusions.
The study appears to have made no allowance for the treatment effect of the so-called placebo?

That does not detract from the tremendous integrity, compassion and commitment of the researchers, nor the power of the documentary.
Click to expand...

You get saline with the rtx, too.
 
adambeyoncelowe said:
Perhaps the ritux has such (comparatively) bad side-effects it might undo the benefit of saline and/or a placebo.
Click to expand...

Possibly. I didn’t get any side-effects. The saline and the cortisone I got with the rtx helped tremendously in coping with the stress of the treatment (full or half days at the clinic) and especially the long trip home (by plane). But those effects would always come to an abrupt stop a few hours later and my partner would need to carry me to bed and spoon feed me.

IV saline is lovely, it feels like a glass of cold water on a hot day but for your veins. But it doesn’t last very long.

Did the placebo group also get cortisone?
 
That was exactly my issue. IV saline cannot be seen as placebo for ME/CFs when is one of the tools recommended for OI.
They should of use sugar pills ( say one treatment is IV and the other pill form or saline shots.
 
Just a thought (came up on another thread https://www.s4me.info/threads/lightning-process-discussion-thread.5809/page-10#post-482503)

I wonder if the makers of this film might consider doing one on Phil Parker and the Lightning Process, not necessarily only in relation to ME?

I also found this production company whose founder is Norwegian but now mainly works in the UK.
(I saw one of their documentaries 'The Mormons are coming' on BBC2 fairly recently).
https://www.peggypictures.com/about

I have no idea how these things work in terms of pitching ideas etc so will leave to more media savvy people, hopefully with contacts.
 
I just watched this and it was quite good. Dr. Fluge features a lot and is a pretty funny guy. There were good examples of the suffering of ME/CFS, showing people who need to be in dark bedrooms for days.

From the first half, it seemed to me almost like this movie was made to be an advertisement for Rituximab for ME/CFS before the results were even known, where it was showing patients saying how excited they were for this medication and showing a person who had taken it running a 10K.

I was happy and surprised to see that the film didn't end before the results were known. Like the others in this thread said, watching the opening of the negative results was bittersweet. Heartbreaking watching their hopes crushed in a minute. But great that they allowed the world into that moment and that Dr. Fluge was responsible enough to be able to immediately say "this was a negative result" instead of trying to fit the data to what they wanted to see.
 
I realise that I was in the Alps with limited internet when this came out - wondering if I was going to get to fly home with the Covid outbreak on the news (no worries, the government didn't wake up for another month, our real problem was a freak storm closing airports).

I have not listened through in detail but it is clearly an excellent portrait of Drs Fluge and Mella. Oystein's gentle humour is there, together with his commitment. Olav is a quieter character but his original determination to get ME/CFS taken seriously shows through. This is what real scientific collaboration is about. No window dressing, just some regular guys who know how to keep going, and then keep going.
 
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