• 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.

Peter White (PACE) in the Guardian

eafw

Senior Member
Messages
936
Location
UK
This has a whiff of the SMC about it, I think. Narrative getting out of control: who are our friends?

My exact first thought. There is clearly a pretty cozy relationship between the Guardian and the SMC crowd. Their reporting on PACE is terribly skewed by this.

Is it too optimistic to hope that this desperate error by Peter White could result in pushing the PACE scandal into the mainstream media?

We can but hope, but they have been getting away with a lot for a long time now.

This is shockingly, shockingly desperate. He's unhinged if he thinks this sort of white washing doesn't risk biting him in the ass down the line.

Sadly, he will more likely be lined up for a nice pension and easy retirement along with a bit of consultancy work. He's already in with the CMRC lot (who show their true colours by refusing to distance themselves from the PACE study and its authors), so I'm sure he'll smarm his way out of any serious consequences at all

Agree, their behaviour is beyond pathetic. They have now become a laughing stock, and seem to be their own worse enemy.

They're a laughing stock to us, but he's still accepted by many in the "CFS" research world, he is supported by his university, the SMC (and hence much of the press), by the Lancet, his mates in parliament and the HOL,funding bodies and so on. There is a whole nasty mess there, which few in the mainstream seem to be prepared to tackle.

And, here is the archive just in case they pull it totally, http://archive.is/aTTLq
 
Messages
3,263
Has anyone posted a comment that there seemed to be a lack of reporting of adverse reactions? Many, MANY people dropped from the study and the questions and concern is that if those patients were receiving GET and got worse, that they dropped out because it wasn't as safe as it's promoted as being and had to drop out in order to protect their own health. If the reason for patients dropping out were unrelated to adverse outcomes it's difficult to determine based on the lack of information.
Actually, they kept drop out rates pretty low. I think thiey managed this by making a special effort to allow patients to "bend" the usual rules of GET whenever there were signs of danger. This is also why reported harms were low for their version of GET.
 
Last edited:

user9876

Senior Member
Messages
4,556
Actually, they kept drop out rates pretty low. I think this managed this by making a special effort to allow patients to "bend" the usual rules of GET whenever there were signs of danger. This is also why reported harms were low for their version of GET.

That is probably why they didn't measure compliance levels to see how much activity those in the GET group were doing
 

user9876

Senior Member
Messages
4,556
I wonder if this is actually White's right to reply on Nathalie's article (which he mentions) and they've done the bare minimum that they could get away with.

This makes me feel better, which probably means it's wrong.
Letting him lie about alternative an alternative analysis is not the bare minimum
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Nathalie's article is mostly about the protest, it only has one (or two?) lines about the recovery analysis. It was an excellent article, don't get me wrong, I'm just pointing out that White's opinion piece can't be a right of reply to a single line in an article, that would be ridiculous.
 

worldbackwards

Senior Member
Messages
2,051
Nathalie's article is mostly about the protest, it only has one (or two?) lines about the recovery analysis. It was an excellent article, don't get me wrong, I'm just pointing out that White's opinion piece can't be a right of reply to a single line in an article, that would be ridiculous.
Yes it would, but I wouldn't put it past him to demand such a thing.

I just can't understand why they've put up such a niche article and then buried it so comprehensively.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I have this in my memory data-bank for you all and wanted to share:


Peter White post PACE TRIAL publication critique in 2011 following Professor Hooper's complaint to the Lancet.

''The PACE trial did not purport to be studying ME''

Source:
Peter White’s letter to Richard Horton
Source: http://www.meactionuk.org.uk/The-PACE-Trial-did-not-go-unchallenged.htm

Vs

Peter White in the Guardian Newspaper, post PACE trial data release by QMUL ordered by a judge in 2016:

''If my team's research on ME is rejected, the patients will suffer''

Source:
The Gaurdian (online edition)
Opinion
ME/Chronic Fatigue Syndrome
Dr Peter White
Friday 30th September
Available online at:
https://www.theguardian.com/comment...tients-suffer-put-off-treatments-our-research



 

Attachments

  • a_different_memory_of_events_than_others.jpg
    a_different_memory_of_events_than_others.jpg
    40.8 KB · Views: 8
Messages
13,774
I have this in my memory data-bank for you all and wanted to share:

'The PACE trial did not purport to be studying ME''


Peter White post PACE TRIAL publication critique in 2011 following Professor Hooper's complaint to the Lancet.

I don't think that quote matters: "does not purport to be studying CFS/ME but CFS simply defined as a principal complaint of fatigue".

I read it as just a snide comment from White about use of the term 'CFS/ME' when discussing science as there are no set criteria for CFS/ME which is really something of a colloquialism. I don't see how that quote leads to any meaningful criticism of the PACE trial.
 

Research 1st

Severe ME, POTS & MCAS.
Messages
768
I don't think that quote matters: "does not purport to be studying CFS/ME but CFS simply defined as a principal complaint of fatigue".

I read it as just a snide comment from White about use of the term 'CFS/ME' when discussing science as there are no set criteria for CFS/ME which is really something of a colloquialism. I don't see how that quote leads to any meaningful criticism of the PACE trial.

That's fair enough, but here is my reasoning why it's relevant to this thread on Peter White in the Guardian (what this thread is about).

1) It's about Peter White and the PACE trial, what the Guardian article is about.
2) Because it was Peter White's response of Professor Hooper's complaint about the PACE trial (PACE specific)
3) Because it is the opposite of what he is claiming now. Peter White has always rejected ME outright (with Wessely) now he is calling himself and his team ''ME researchers'''. A laughable flip flop.

Peter White himself pointed out in a talk, patients who use the label ME don't recover, and those who use the label CFS do. He is very anti ME, and somehow now all of a sudden in the Guardian, he's an ''ME'' researcher.

That's how it's meaningful, very much so.

You are free do disagree though.
 
Messages
13,774
That's how it's meaningful, very much so.

You are free do disagree though.

Oops. My reply will have seemed more blunt than I intended as I was mainly commenting for other people, rather than meaning to reply specifically to you. Sorry - I didn't really think about how it would sound rude to you. I've just seen that quote misused a few times, so thought it was worth making clear that it isn't really saying much. The other thing is that headlines are not normally written by the author of the article.
 

flybro

Senior Member
Messages
706
Location
pluto
have you seen t6he moderATED comments, from some people here too.

looks odd, would white have any input on comment suiitability?