"Left Out" documentary on ME/CFS research in Norway
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That was very well done, including VERY suspenseful...... as I am sitting there myself...recalling that these Phase III Rituximab trials did not turn out...and here it is. (and my mother-inlaw, now passed, was from Bergen...so I like seeing this as well).
And the woman goes and runs this marathon. WOW. (one of the few positive responders, was in fact saved).
And the young gal Goes to the High School Graduation...WOW. Cost her 22 days.
What would make this documentary perfect is: an update at the end indicating we actually have UPMTEEN Diagnostics- we just NEVER seem to get anywhere with any of it.
My fingerprints are still gone.
is Stanford University still there? maybe it slipped off the Pacific plate, and we missed it.
And the woman goes and runs this marathon. WOW. (one of the few positive responders, was in fact saved).
And the young gal Goes to the High School Graduation...WOW. Cost her 22 days.
What would make this documentary perfect is: an update at the end indicating we actually have UPMTEEN Diagnostics- we just NEVER seem to get anywhere with any of it.
My fingerprints are still gone.
is Stanford University still there? maybe it slipped off the Pacific plate, and we missed it.
@Rufous McKinney
Im not sure I'll pull myself together enough to see it...
May you please tell a little bit more?
Is the movie about me patients being well by the use of rituximab?
Im not sure I'll pull myself together enough to see it...
May you please tell a little bit more?
Is the movie about me patients being well by the use of rituximab?
It's about the largest rituximab trial, about the science, but also the lives of people with ME. I think it's important that people see it, healthy people. Most of us with ME probably knows most of what it has to say already.
We do get to follow one person who got well on rituximab. And one young person waiting for the science to come in as she gets worse - it's rather heartbreaking to see her hope when we know how it will turn out.
There is a scene where they open the code to the study to count up who got placebo and who got the rituximab, which felt very suspenseful, even knowing the result.
I know I wasn't who you asked, @Hufsamor, but I figured I would answer anyway, hope that's alright.
We do get to follow one person who got well on rituximab. And one young person waiting for the science to come in as she gets worse - it's rather heartbreaking to see her hope when we know how it will turn out.
There is a scene where they open the code to the study to count up who got placebo and who got the rituximab, which felt very suspenseful, even knowing the result.
I know I wasn't who you asked, @Hufsamor, but I figured I would answer anyway, hope that's alright.
It seems it hasn't been proven, that Rituximab is consistently helping people. The results were probably no better than random chance.
But that woman who WAS helped by it -is now able to run a marathon ! But it was so sad to hear of the other young woman whom it didn't help at all.
But that woman who WAS helped by it -is now able to run a marathon ! But it was so sad to hear of the other young woman whom it didn't help at all.
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Great Summary!
that scene was really intense...so very interesting....something we just DON:T See.
Your a major scientist, you have invested tremendous time and attention into Phase III trials and you have so much HOPE, and then you get these Crushing Results.
And yet it helped someone.
Watching it not knowing the outcome of the Phase III trial is probably a bit different from watching it knowing that.
I"d like to go back and figure out....isn't this also the case for LDN? It helps some percentage...it helped me and I would not wish to give it up...but it didn't help a larger percentage..
And also curious about patient criteria the used...
that scene was really intense...so very interesting....something we just DON:T See.
Your a major scientist, you have invested tremendous time and attention into Phase III trials and you have so much HOPE, and then you get these Crushing Results.
And yet it helped someone.
Watching it not knowing the outcome of the Phase III trial is probably a bit different from watching it knowing that.
I"d like to go back and figure out....isn't this also the case for LDN? It helps some percentage...it helped me and I would not wish to give it up...but it didn't help a larger percentage..
And also curious about patient criteria the used...
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My grown daughter is watching it....(norway hooked her Scandanavian genes)....
Why is there so much ME in Norway...she asked?
I responded- there are estimated 65 M people world wide..and nothing special about Norway....and what about our 90% undiagnosed rumor?
Its interesting that...several Norway web sites about ME...still present Rituximab as- the NEW CURE. They are quite outdated...and its disappointing ....nobody has bothered to- Update Oslo University for instance!
https://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug/
This one is dated 2011.
The lack of dates on blogs, articles..is surprising.
Why is there so much ME in Norway...she asked?
I responded- there are estimated 65 M people world wide..and nothing special about Norway....and what about our 90% undiagnosed rumor?
Its interesting that...several Norway web sites about ME...still present Rituximab as- the NEW CURE. They are quite outdated...and its disappointing ....nobody has bothered to- Update Oslo University for instance!
https://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug/
This one is dated 2011.
The lack of dates on blogs, articles..is surprising.
Maybe this has been brought up before, but how could they use saline as the placebo?? Low blood volume is a known problem in ME and saline would significantly help to correct that. Also, many ME patients also have POTS and POTS patients can have life changing improvement from saline infusions. They need two new trials--one with saline as the main target and the second with rituximab vs a placebo that is not blood volume or saline boosting. It's a great film but a frustrating watch as I hadn't know saline was the placebo until I watched it.
I found this documentary fascinating. I was particularly interested in the way the role of Lactic Acid or lactate in the blood was connected with post-exertional malaise. I will start a new thread on this topic.
I really thought they did a good job of showing what it is like to live with ME. I think it is a good introduction for people who don't know much about the disease.
I really thought they did a good job of showing what it is like to live with ME. I think it is a good introduction for people who don't know much about the disease.
I had the same reaction to that. Using something that's actually used as a treatment as the placebo - whaat? I get that it's a very standard placebo to use, but surely not the best in this case?
Not sure what alternatives they would have, though - perhaps normal, filtered water wouldn't be safe? Or maybe even that would influence it. And it would have to look (and smell) identical for the study to be truly double blind.
Not sure what alternatives they would have, though - perhaps normal, filtered water wouldn't be safe? Or maybe even that would influence it. And it would have to look (and smell) identical for the study to be truly double blind.
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Thats a good point...saline may not be BENIGN and doing nothing in our particular bodies.
I think you can't just give people an IV of water......THat would be a problem...saline= ocean=the salinity that is typical of our blood...so putting fresh water in there would in fact probably be harmful.
I think you can't just give people an IV of water......THat would be a problem...saline= ocean=the salinity that is typical of our blood...so putting fresh water in there would in fact probably be harmful.
What is quite strange is that some people made significant and lasting recoveries/improvements from the saline. Saline benefits are generally very short lived--a few days to a week, say. Or I guess the improvements could have been from something totally different. Not sure if patients were told not to try any other new therapies during the trial.