DOWNLOAD the list of publicly available documents from this link: MattheesTrib OPEN LIST OF DOCUMENTS https://valerieeliotsmith.files.wordpress.com/2016/05/mattheestrib-open-list-of-documents.pdf
-
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.
QMUL v IC + Matthees (PACE Trial) Part 2: Documents, Open Justice and Open Data -Valerie Eliot Smith
- Thread starter Dolphin
- Start date
DOWNLOAD the list of publicly available documents from this link: MattheesTrib OPEN LIST OF DOCUMENTS https://valerieeliotsmith.files.wordpress.com/2016/05/mattheestrib-open-list-of-documents.pdf
Esther12
Senior Member
- Messages
- 13,774
Looks like QMUL went strong on the 'dangerous-evil-patients' line.
The British judiciary don't have a great reputation for scepticism of unfounded claims coming from those in authority. That, combined with the strange going-ons on reporting from the tribunal, give me a bad feeling about this. If this decision goes the wrong way it could mean a few more years of fighting to get the truth out.
The British judiciary don't have a great reputation for scepticism of unfounded claims coming from those in authority. That, combined with the strange going-ons on reporting from the tribunal, give me a bad feeling about this. If this decision goes the wrong way it could mean a few more years of fighting to get the truth out.
If CBT and GET were even the least bit effective, wouldn't it make sense that the PACE trial would have some small cohort of patients (not just a patient here or there who temporarily convinced themselves to do more and who eventually paid the price for doing so) stepping up to defend the PACE findings?
Wouldn't you think that the authors might be able to find a small group of patients who would be willing to step up and describe the nature of what they suffered from and defend the treatment that changed their lives?
I know that I'd feel as though I'd betrayed Dr. Montoya and my endocrinologists if I stood aside while they were being accused of manipulating data. My doctors stood up to significant pressure from various corners to not treat me as they saw fit. It would be dishonest of me to not testify to the significant and sustained improvement I've enjoyed because of the creativity and strong character of my present team of doctors.
Where is this same group of people, patients who owe significant improvements in their health to the PACE trial doctors, and who have benefited from CBT and GET? Why does it seem that the only people defending the PACE trial are the authors and the university administrators and the Lancet editors who have their reputations (not their lives) on the line?
All I see in their defense of withholding the PACE trial data are claims of threats (not even the specific threats - only the implied " go to hell") in response to the significant damage their recommendations - based upon manipulated data? - have caused for many patients.
Wouldn't you think that the authors might be able to find a small group of patients who would be willing to step up and describe the nature of what they suffered from and defend the treatment that changed their lives?
I know that I'd feel as though I'd betrayed Dr. Montoya and my endocrinologists if I stood aside while they were being accused of manipulating data. My doctors stood up to significant pressure from various corners to not treat me as they saw fit. It would be dishonest of me to not testify to the significant and sustained improvement I've enjoyed because of the creativity and strong character of my present team of doctors.
Where is this same group of people, patients who owe significant improvements in their health to the PACE trial doctors, and who have benefited from CBT and GET? Why does it seem that the only people defending the PACE trial are the authors and the university administrators and the Lancet editors who have their reputations (not their lives) on the line?
All I see in their defense of withholding the PACE trial data are claims of threats (not even the specific threats - only the implied " go to hell") in response to the significant damage their recommendations - based upon manipulated data? - have caused for many patients.