• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Rituximab Trial - SMC Expert Opinion?

ash0787

Senior Member
Messages
308
hope they unblind it soon, I remembered it must be around now

psychobabblers are going to be really annoyed since theres no way they can dispute such a test
 

A.B.

Senior Member
Messages
3,780
hope they unblind it soon, I remembered it must be around now

psychobabblers are going to be really annoyed since theres no way they can dispute such a test

They can argue that CBT/GET are more cost effective and should remain treatment of choice for most patients. That's the pessimistic prediction.

A more optimistic one is that they will come under increasing pressure and scrutiny and finally be held accountable in some way. A positive result will give courage to those who would like to speak up but did not yet feel safe enough to do so.
 
Last edited:

Cinders66

Senior Member
Messages
494
Given that it's just one phase 3 trial study and that I think quite strict criteria and selection was in place and likely benefitting a portion only (if it's successful) I'm guessing the uk pour cold water approach of the SMC will be that :

it needs more confirmation,
we need to know more who it helps it can't be applied generally to the more broad CFS population and
it's cost and side effects mean that the uk approach of non medical treatments in the form of exercise and CBT (which have proven benefits according to them) should continue in the main.

Although they would have to have some people mumbling semi-good things about the science and it being interesting etc.

If it's a negative paper, which I don't expect, they will have a field day trashing it.
 

Graham

Senior Moment
Messages
5,188
Location
Sussex, UK
I struggle to understand your cynicism over the Science Media Council. Their position will be quite clear: the control group will be inadequate: the reliance on subjective assessment will be deemed unreliable: the lack of positive improvement with objective testing will show a failure to demonstrate real results: and the researchers will have been biased by their commitment to profit from a positive outcome. Who knows, perhaps even a substantial proportion of the patients will not even have ME? No, on second thoughts, that would be ridiculous, wouldn't it?

Anyone supporting the proposal that a Stanley Unwin replacement be found is welcome to provide me with a glass of wine, then put my name forward. And don't forget Ogdens' Nut Gone Flake: I still have a copy. (Those who don't understand the reference are indecently young.)
 
Messages
85
Why not get Stanley Unwin. He could explain nicely how the tuximabbers goes trickly how down to the bumblybees, and all a popping goes!! And if he is dead, which I think he is, Dr De Meirleir could probably do a Belgian version of much the same thing, with some help from that Beiger chap.
I'm going to put that Stanley Unwin 'quote' on a sweatshirt.
 

msf

Senior Member
Messages
3,650
Why not get Stanley Unwin. He could explain nicely how the tuximabbers goes trickly how down to the bumblybees, and all a popping goes!! And if he is dead, which I think he is, Dr De Meirleir could probably do a Belgian version of much the same thing, with some help from that Beiger chap.

Looking back, I find it a bit sad that Prof. Edwards didn't think it necessary to come on here and explain why Rituximab, which he had spent so much time on here talking about, did not prove effective (unless he did it elsewhere on this forum, in which case I apologize). I am not trying to stir up trouble between forums, I just mean that it would be nice for the people on here who used to put a lot of faith in his pronouncements to hear why it didn't work out.