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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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ThanksI am tagging @Hufsamor because she might be interested in this.
Thank you for posting. I will watch this later.
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.
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 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?