• 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.

David Tuller: Trial by Error Cont'd: The New Fitnet trial for kids

Sidereal

Senior Member
Messages
4,856
If this is true it is of concern. The methodology from Norway is exemplary. Perhaps even more important the Norwegians are very happy to admit that their results may not show any true effect. They have pointed out that their primary endpoint was not met at phase 2 and that the phase 3 trial is an attempt to replicate a possible effect based on the 6 month analysis. They are entirely honest about their work. This is in stark contrast to the way research on CBT has been presented in the UK.

Yes, it's shocking that she would go after these careful and honest scientists. Their outstanding methodological rigour is something we almost never see in the ME/CFS field. Shame on her - if those comments are true.
 

Solstice

Senior Member
Messages
641
Yes, it's shocking that she would go after these careful and honest scientists. Their outstanding methodological rigour is something we almost never see in the ME/CFS field. Shame on her - if those comments are true.

I'm not even doubting it to be honest. For any other person I might, but for someone from that circle this is just another day at the office it seems. Lieing is their core-business.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
If this is true it is of concern. The methodology from Norway is exemplary. Perhaps even more important the Norwegians are very happy to admit that their results may not show any true effect. They have pointed out that their primary endpoint was not met at phase 2 and that the phase 3 trial is an attempt to replicate a possible effect based on the 6 month analysis. They are entirely honest about their work. This is in stark contrast to the way research on CBT has been presented in the UK.

One has to assume there is validity in this comment. The person concerned has put these assertions out in the public domain. I think it might be worth bringing them to the attention of Fluge and Mella so that they might formally ask Ms. Crawley what her views on their research is, given there is now this allegation of their 'dodgy' research in the public domain. Might make for an interesting response.... Anyone here willing to and in a good position to draw their attention to the comment?
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
One has to assume there is validity in this comment. The person concerned has put these assertions out in the public domain. I think it might be worth bringing them to the attention of Fluge and Mella so that they might formally ask Ms. Crawley what her views on their research is, given there is now this allegation of their 'dodgy' research in the public domain. Might make for an interesting response.... Anyone here willing to and in a good position to draw their attention to the comment?
Not sure it's a good idea to distract them from the valuable work they're doing and get them embroiled in the appalling politics of ME. In their postion they'll be being asked to comment on hearsay (I found the comment totally credible, but it's still just hearsay evidence from an internet forum as far as a third party would be concerned), even if EC doesn't deny it, they won't get a word of sense out of her anyway. She doesn't care about evidence and the difference between good and bad trial design is an irrelevance to her, she was just sticking the boot into what she sees as the opposition in a rather primitive and ill-considered way with no regard for the truth as usual, and if she gets called out on it she'll just do it another way and we'll have wasted Fluge and Mella's time. Best thing we can do is leave them in peace to get on with the science and let others deal with the filthy politics. I'd hate to think of EC getting to waste a minute of their time.
 

JoanDublin

Senior Member
Messages
369
Location
Dublin, Ireland
Not sure it's a good idea to distract them from the valuable work they're doing and get them embroiled in the appalling politics of ME. In their postion they'll be being asked to comment on hearsay (I found the comment totally credible, but it's still just hearsay evidence from an internet forum as far as a third party would be concerned), even if EC doesn't deny it, they won't get a word of sense out of her anyway. She doesn't care about evidence and the difference between good and bad trial design is an irrelevance to her, she was just sticking the boot into what she sees as the opposition in a rather primitive and ill-considered way with no regard for the truth as usual, and if she gets called out on it she'll just do it another way and we'll have wasted Fluge and Mella's time. Best thing we can do is leave them in peace to get on with the science and let others deal with the filthy politics. I'd hate to think of EC getting to waste a minute of their time.

I know you're right, of course. Im just fed up to the back teeth of that woman getting away with saying anything she wants without any consequences. So unprofessional. Your points are well made
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Except in this case, the methodology of the Rituximab trial was not flawed. So I think this is more a case of "Whoever smelt it, dealt it" :confused:
I think, if questioned closely, those supporting a BPS approach might make much of the phase one and phase two trials not being properly designed as a phase 3 trial, without ever mentioning that they were not phase 3 trials nor that a phase 3 trial is well underway and we expect to hear something within a year.