• 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 (FM), 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 spent £250,000 in legal fees to prevent the release of the PACE trial data

Seven7

Seven
Messages
3,444
Location
USA
Is there an ethic comeetee that this can be reported to? Any institution that can take this on?
 
Messages
2,087
No one here should celebrate QMUL 'losing' in that way. It will just help them to argue that vexatious PWME are the reason they had 'no choice' but to defend themselves blah blah. If anyone calls them on this (like their own student body), they'll blame us. Let's not give them any ammunition.

The fact that it was their choice to spend a ton of money on upmarket lawyers to oppose a petitioner with nothing like those resources is neither here nor there — spin will triumph over reason.
@sarah darwins, you are of course right, not a loss for us to celebrate.

And i think we can all agree, they chose to take that route, its very puzzling to everyone that they did so.

I think we need to stop thinking like this.

We have our rights.. We shouldn't worry about others labelling us as vexatious or otherwise. This is just an excuse used by the pseudo-scientists to keep us quiet.

We wont be kept quiet by these fraudsters and there is no need to feel bad about speaking up.

The more noise we can make the better. I am not an expert on these matters but generally my understanding is, if you want to be heard you have to speak up.

Lets celebrate every little little thing we can! We have nothing to fear! We have been downtrodden for long enough.
 
Messages
13,774
I think we need to stop thinking like this.

I don't want something I say to end up being misrepresented in a legal judgement that screws patients over. This has happened in the past, and there is a real danger that it will happen again. It's up to each individual to decide how much they want to care about that, but I think it's wrong to say that we have nothing to fear. We've got a lot stacked against us.
 
Messages
2,087
I don't want something I say to end up being misrepresented in a legal judgement that screws patients over. This has happened in the past, and there is a real danger that it will happen again. It's up to each individual to decide how much they want to care about that, but I think it's wrong to say that we have nothing to fear. We've got a lot stacked against us.

Everyone to their own.
I have been quoted out of context before by QMUL legal team, but it wont stop me from speaking up.

We may have a lot stacked against us but that does not mean we should fear speaking up.

ETA:

If the only reason to fear speaking up or celebrating a win, is fear of our oppressors does that add up ? It exactly what they want us to do. I believe we should celebrate every little victory by marching the streets if we physically could.
 
Messages
13,774
I'm not against speaking up, but I think it's worth trying to do so in a way that benefits patients, rather than benefits QMUL.
 

sarah darwins

Senior Member
Messages
2,508
Location
Cornwall, UK
My position is, we benefit QMUL by not speaking up.
BurnA. You quoted me above but you may not realise that my comment (of nearly a week ago) was in response to something which was subsequently removed by the commenter (after reading my comment). So you don't have the whole picture there.

No one is saying don't speak out loudly against the PACE authors or the institutions that protect them for reasons of self-interest. It was simply a case of not handing them a gift-wrapped stick to beat us with.

edit: just edited my own comment for the same reason! Easy to get carried away.
 
Last edited: