• 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.

Ben Goldacre: checking if clinical trials reported what they said they would

Esther12

Senior Member
Messages
13,774
Taking tweets from several years ago that are possibly out of context and say Ben Goldacre feels this or that way about me/cfs doesn't always mean the conclusions are accurate. This is just as inappropriate when others do the same to us.

I posted links to all the CFS tweets from him I could find (other than the most recent tweet to Coyne where he dismissed PACE concerns as a 'spat'). I don't think that there's anything unfair about that.

From what I remember of the discussions of PACE on the Bad Science forum, and can see from the thread linked to here, the 'skeptics' there were looking for ways to excuse the behaviour of the PACE researchers and dismiss the concerns of patients, happily deferring to a certain kind of authority and consensus, while pretending to have a commitment to a critical analysis of the evidence.
 

CFS_for_19_years

Hoarder of biscuits
Messages
2,396
Location
USA
I was just having a look on the Bad Science forum and recent events haven't gone unnoticed. In fact there seems to be one for two people taking up the cudgels over there on our behalf. Scroll down a bit for recent coverage.

http://www.badscience.net/forum/viewtopic.php?f=3&t=34704&hilit=cfs pace

Some people actually shocked by Coyne' s interventions.

There's someone on that Bad Science thread going on about how, way back when, some people would round on anyone who spoke out against PACE in a nasty and concerted fashion until they shut up. Which is an interesting way of preventing discussion. But hey, maybe that person was hijacking the agenda and distorting the debate.

Anyone who has the time should have a good look at that thread to see how a group of academics who gave a swift kick-in-the-pants to a user named tomkno2, later agreed that they were more receptive to the same arguments when posted by an academic such as Coyne or Tuller. They even show links to their own bad behavior in post #49.

Post #47
You know what's kind of funny, though? The open letter, the new request for data, the involvement of James Coyne, the blogs of Keith Laws...all kickstarted upon the publication of the blogs David Tuller has written on Racaniello's Virology Blog (is he a conspiracy theorist now, too? that list seems to be growing...).

Which in turn was based, as Tuller himself noted, on the work of...someone who raised a lot of the points here, on this very forum.


Years ago.

They make it clear they barricade the doors (their words) against non-academics and anyone who doesn't have a strong command of statistical language.
- - - - - - - - - - - - - - - - - - - - - - - - -
Post #10 - PR and viggster quoted!
There was another story involving ME/CFS, in the US, where the NIH issued a press release promising to devote more resources to researching the condition. It is said that when asked about the UK psychiatrists responsible for more than a bit of well-known CFS research, Francis Collins commented that they didn't possess the necessary skill set, or some such.
Ouch.

Now, as far as I know, that was a quote from a phone call between Vastag and Collins, only reported here on PR, so word does get around. Time for a confetti party.:star::balloons::star:
http://forums.phoenixrising.me/inde...nd-fences-my-call-with-him.40869/#post-657558
As an aside: I mentioned the problems in the UK, saying that psychiatrists had hijacked ME/CFS. Collins said, "They don't have the right skillset." That's a political way of saying: Uh, yeah, it's time for real scientists to study this thing.
 
Last edited:

DanME

Senior Member
Messages
289
One of these days Ben Goldacre is going to have to choose between his loyalty to Simon Wessely and upholding the principles he keeps proclaiming regarding honest and transparent science. By following Wessely's lead, and refusing to look into PACE while using disparaging language for those who do, he's making a mockery of his purported mission.

Or maybe he's just waiting for Wessely to retire and/or die of old age, so the dilemma evaporates :rolleyes:

At any rate, I think his current behavior proves that he talks a big game, but lacks the fortitude to follow through when the going gets tough. But here's a hint: if your friend/colleague can't handle any academic disagreement from you, you're not a friend or a colleague. You're an underling who has been taught to dutifully do as you are told.

What? What have I missed? I have been a huge fan of Ben Goldacre so far and enjoyed his superb book and TED talk about Bad Pharma. But his refusal to look into the PACE trial while tweeting about Chronic Fatigue (Syndrome?) extremists makes him and his cause appear in very bad light. The PACE trial is a scientific disaster, a scandal even of huge proportions, and is finally getting the pressure from the scientific community it truly deserves.

What is his connection to Simon Wessely? Why is he loyal to him? And didn't he say himself, the weakest of all evidence is authority? Can somebody explain and enlighten me?

"Ben has been critical of those who speak out about the poor quality research into Graded Exercise Therapy and CFS/ME"

"I have never done this. You have made this up. Making things up seems to be a recurring problem for some of the more aggressive campaigners on this issue, but there is no reason believe you represent the majority of patients with the condition, which can be crippling and is often poorly managed. Trials on CFS/ME should be properly reported just like any others."

WTF? Seriously???
 

SOC

Senior Member
Messages
7,849
Taking tweets from several years ago that are possibly out of context and say Ben Goldacre feels this or that way about me/cfs doesn't always mean the conclusions are accurate.
How much context is there in a tweet? It's not like we're clipping a single sentence out of an entire article. He wrote what he tweeted understanding that a brief tweet stands by itself. How many ways are there to interpret those tweets?

What I admire about Ben Goldacre and I have a lot of respect for him, is that he appears to not have preconceived ideas and proceeds from there. He keeps an open mind.
o_O I don't see how the evidence supports that statement. Do any of the tweets listed above sound like he has no preconceived notions? It certainly doesn't sound like an open mind is behind them. It sounds like a guy swallowing (and passing on as scientific truth) blatant propaganda hook, line, and sinker without applying one iota of critical thinking.
He's a psychiatrist and works in the same department as Wessely but we don't know how much that impacts what he believes. That's guilt by association and that's a logical fallacy.
Whoa, talk about logical fallacies! Pot, kettle -- kettle, pot. I and others at PR have judged his statements on their own merit, not on either his profession or who he associates with. I've never seen anyone at PR say his statements are false because he's a psychiatrist or because he works with SW. We've said his statements in and of themselves are biased and lack critical insight. People may have speculated why he has that bias, but that's different from dismissing his statements based on guilt by association. It's an incredible logical (?) leap to claim that because Goldacre's profession and associations have been mentioned they are the reason we disagree with him.
But on the whole, I love the Bad Science Forum
On the whole, I dislike Bad Science because there's a lot more ripping apart of ideas they don't agree with than valid scientific assessment. I often find myself in agreement with the Bad Science folk about the ideas they disagree with. That doesn't mean I think their approach is scientifically-based. There's a lot more ripping and bitching than calm scientific discussion... a lot more mutual "aren't we smarter than other people" self-congratulatory back-patting than honest effort to sort out the truth from the falsehoods. It's a smug little "aren't we clever" clique, imo.
I think it is disingenuous to say that any researcher who is not addressing the PACE trial is against us. We are living through this and because of that we, and I include myself, we sometimes think that everyone should focus on our issues. In a perfect world but the reality is that there are so many issues in this world.. Are we against research on illnesses here simply because they are not mentioned on the forum?
If they didn't say anything about ME or the PACE trial, we wouldn't be concerned, the problem is they DO talk about ME and PACE is a very biased manner, accepting a lot of garbage without applying any critical thought and refusing to look at sound science objectively.

That said, I think it's fair to question why, if they are going to discuss it at all, they are unwilling to delve into one of the greatest examples of bad science of current times -- research that unlike the average study has had a huge impact on public policy internationally. This is not a little study about whether vitamin C extends lifespan. This is a study with major impact. They should be concerned about it if they really mean to expose bad science that harms people and results in poor public policy... not that I really believe that's what they're actually about.

I've often wondered if others may have preconceived notions about him because he debunks a lot of alternative medicine.
Like I've ever been a supporter of alternative medicine? o_O Got a little preconceived notion yourself there, eh?

I don't like Bad Science because I'm a researcher by nature, training, and profession. I know scientific evaluation is not about bashing ideas you don't agree with, it's about teasing out the truth from the mass of information, and rationally evaluating the data with an open mind. It's not making snap judgements and then sitting around like a bunch of middle-schoolers pointing fingers, ridiculing other people, and slapping each other on the back for the 'cleverest' snide remark. They're entitled to do that. It could be considered a social activity of a sort, but it's not science. If they called themselves the Bash Anything We Don't Agree With Forum, I'd find it less annoying. At least they'd be honest about what they're doing. If they actually consistently did good scientific evaluation, I'd even like it. Instead, they act like nasty little schoolchildren and call it science, which just gives science a bad name.
 
Last edited:

biophile

Places I'd rather be.
Messages
8,977
Fair enough barbc56, but surely it's understandable how people could jump to conclusions under these circumstances:

Goldacre made a name for himself by exposing questionable research/publishing practices, strongly criticizes outcome switching, and co-founded a respectable campaign to make trials publish all methods and results including all pre-specified outcomes (which PACE failed to do). Goldacre used to work for Simon Wessely, according to Wessely himself, the godfather of the PACE approach to CFS. PACE became a relatively high profile and highly controversial case of outcome switching and underrepporting, but Goldacre refuses to weigh in, even after being prodded by James Coyne. Despite his general silence, the only thing Goldacre has ever really said about CFS has been promoting on Twitter the news articles about the allegations of abuse and harassment of CFS researchers, articles which also had the effect of smearing critics of PACE as extremists or holding extremist views. Goldacre now claims Coyne is encouraging CFS extremists to harass him over PACE. Finally, Goldacre also seems to uncritically accept the existence of a powerful placebo effect and the power of mind over body, so may be less inclined to doubt claims about the successes of psychotherapy and behavioural interventions.

Now, I'm sure Goldacre has his hands full with other projects, and I'd rather hear from him about what his views are, but the above isn't exactly encouraging. Maybe as you say, his criticism of CAM may provoke some people, but I think the main reasons for doubt are clear. Sooner or later Goldacre will have to say or do something, as the PACE controversy is like a festering abscess on the research community and needs to be treated.

That being said, the task of cleaning up research in general is huge and there is a lot to do outside PACE. As bad as drug research is, much of the psychological research is so bad that it makes PACE look good by comparison. The difference though is that PACE has been promoted as the definitive evidence of how ME/CFS should be treated.

Re Bad Science, XMRV, and PACE.

Understandable that the heated XMRV debate would annoy some people, but it sounds like Bad Science regulars were seduced by PACE and were too busy disparaging and insulting the critics that they basically let all the flaws breeze by with adamants nods of approval. Now that people like Tuller and Coyne are exposing many of the same flaws, things are rather quiet and polite. Perhaps the whole thing demonstrates how critical thinking can get clouded by prejudices and politics?
 
Last edited:

biophile

Places I'd rather be.
Messages
8,977
I can never look at Dr. Myhill with respect after what happened. That's my perspective on what happened.

I don't understand. What did Dr Myhill do other than have some questionable information on her website and giving people B12 injections etc? I don't really know much detail about the Myhill case, was there something really bad? Does it compare with one of her patients killing themselves because of the consequences of actions of Bad Science regulars? Imagine the outrage and SMC organized media attention if a CFS researcher killed themselves over something a patient did!

[edit: striked out unconfirmed report of suicide]

IIRC a Bad Science regular was professionally reprimanded over trolling. Again, don't remember all the details and maybe it wasn't so clear cut, but I do remember that despite talking the big talk about standing up for science and being taken out of the context on the forum, it was reported that in the proceedings he was meek and apologetic.

I also vaguely recall one of the long Bad Science threads being deleted from view for being too toxic even for BS, and I doubt that it was evil XMRV trolls vs angelic BS regulars, I bet the latter dished out just as much strong vitriol as anyone.
 
Last edited:

Esther12

Senior Member
Messages
13,774
Sorry for turning this thread away from the topic... but another thing(!) is I vaguely remember Goldare doing a BBC radio programme on disability benefits and welfare that seemed heavily influenced by Waddell/Aylward BS. I didn't take notes when I first listened to it, so maybe my memory is being unfair to him, but it's another reason I'm not his biggest fan.
 

barbc56

Senior Member
Messages
3,657
Didn't mean to start such a bruhaha. I did take out the statement about Myhill as it may be somewhat off topic but have left the rest.

Mods may change anything else.

I just didn't want to throw Goldacre under the bus as the blog was very good. I think under the right circumstances he or perhaps more to the point his stance on science studies could be an asset.

Why do we keep putting others in a no win situation?

Obviousy, perspectives are different here, so I'll leave it at that. :)

Barb
 
Last edited:

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
Does it compare with one of her patients killing themselves because of the consequences of actions of Bad Science regulars?
Did that ever really happen? From my foggy memory of the time when I was looking into Myhill and trying to work out what to make of her, this was mentioned as something she claimed but was unconfirmed.

from https://chemobrain.wordpress.com/2012/01/12/about-a-myhill-press-release/

Myhill appears to have created a huge dependency in her patients, who seem to believe she is a guru in the treatment of ME/CFS, something seriously discouraged by best medical practice. Indeed, in Jones’ FTP hearing, Myhill bragged that a patient had killed himself, believing that the GMC was going to prevent Myhill treating him. This isn’t something a Doctor should be bringing the attention of enquiring minds, and has yet to be confirmed.
 

TiredSam

The wise nematode hibernates
Messages
2,677
Location
Germany
What? What have I missed? I have been a huge fan of Ben Goldacre so far and enjoyed his superb book and TED talk about Bad Pharma. But his refusal to look into the PACE trial while tweeting about Chronic Fatigue (Syndrome?) extremists makes him and his cause appear in very bad light. The PACE trial is a scientific disaster, a scandal even of huge proportions, and is finally getting the pressure from the scientific community it truly deserves.

What is his connection to Simon Wessely? Why is he loyal to him? And didn't he say himself, the weakest of all evidence is authority? Can somebody explain and enlighten me?

"Ben has been critical of those who speak out about the poor quality research into Graded Exercise Therapy and CFS/ME"

"I have never done this. You have made this up. Making things up seems to be a recurring problem for some of the more aggressive campaigners on this issue, but there is no reason believe you represent the majority of patients with the condition, which can be crippling and is often poorly managed. Trials on CFS/ME should be properly reported just like any others."

WTF? Seriously???
That's exactly my position. I was a big fan of Benjamin Goldacre before I had ME. Then I learned about the junk science surrounding ME and thought that surely he would have something to say about it, but found nothing. Then I discovered here that he has a history of ME patient bashing and repeating the lies told about us being violent activists. How can anyone who claims to be a critical thinker retweet Max Pemberton?
 

Valentijn

Senior Member
Messages
15,786
I did take out the statement about Myhill as it may be somewhat off topic but have left the rest.
By "off-topic" do you mean "wrong"? I have never heard of Myhill doing anything inappropriate, though I don't particularly agree with her theories behind ME treatment. From what I recall, she was accused of some things, further accused of working as a doctor while the accusations were investigated (which turned out to be delivering piglets), and the accusations were all basically dismissed?

I do, however, recall that a Bad Science forum member who turned out to be a doctor said some very nasty things which got him into more serious trouble.
 

Woolie

Senior Member
Messages
3,263
There's a lot more ripping and bitching than calm scientific discussion... a lot more mutual "aren't we smarter than other people" self-congratulatory back-patting than honest effort to sort out the truth from the falsehoods. It's a smug little "aren't we clever" clique, imo.
I just had a good look at the Bad Science forum today, for the first time, and my impression is reflected perfectly in these words, @SOC. Bad alternative medicine research seems a bit of a soft target for criticism, allowing these folks to feel smug about themselves and their superior knowledge of good methodology without saying anything really original.

@Barb56, keep posting! We can disagree and discuss. No point in all of us just repeating each other like parrots!
 

A.B.

Senior Member
Messages
3,780
It's a bit odd how subservient to authority many self proclaimed skeptics are, when the essence of skepticism is to question everything equally.

It must be hard to for a skeptic to accept that he has sided with the quacks and bad science.
 

user9876

Senior Member
Messages
4,556
I

From what I remember of the discussions of PACE on the Bad Science forum, and can see from the thread linked to here, the 'skeptics' there were looking for ways to excuse the behaviour of the PACE researchers and dismiss the concerns of patients, happily deferring to a certain kind of authority and consensus, while pretending to have a commitment to a critical analysis of the evidence.

I only looked at the time of the recovery paper and there seemed to be a number of the regulars who thought it was fine to ignore the protocol and redefine recovery with such low thresholds.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
Goldacre strikes me as someone who may have taken on trust some information from colleagues without knowing the true situation - which, to be fair, is unknowable to all of us because we are not privy to the relevant evidence. I wouldn't be at all surprised is there is a tiny, mentally disturbed faction of people issuing threats - we're a big enough population of patients that we're going to have our fair share of people with personality disorders. But I don't think we can assume that Goldacre is aware that the issue of threats has been blended with a narrative in which requests for data are being branded "harassment" and ME/CFS patients as a group are being vilified.

I think he could be a useful ally, if he was better informed about the situation. Indirectly, he already is our ally in that he was involved in setting up AllTrials, which sets out clear principles of good research practice which PACE breaks. It's useful to be able to hold up that standard when assessing PACE.

Goldacre is in a weak position to go up against more senior colleagues. He doesn't have a permanent contract, apparently - and that makes him (and any academic in a similar position) very vulnerable. It means that he may only be able to assume a genuine leadership position in certain areas of good practice but not in others.

I don't anticipate that he will feel secure enough to make any direct anti-PACE statements but I would like to see him make some pro-CFS-patients statements. At the very least, I'd like to see no more retweeting of messages that deplore some CFS activists without making it clear that they are very much the exception.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
My view is that we don't know what Ben Goldacre really thinks about ME/CFS and PACE. What we do know is that ME/CFS research is full of junk, probably more than any other disease of similar size, with PACE being the largest and most influential.
He ought to be all over it.

So why isn't he?
It appears he may have some conflicts of interest which could be one explanation however we don't know whether he is deliberately turning a blind eye to all this because of that in a corrupt way. My feeling is that this is not actually the case. (I reserve the right to change my mind).

I think it is likely to be more subtle than that. He is associated with a guy who is very charming, with higher status and influence who we know says all kinds of outrageous things about the disease, people with the disease, people criticising research into the disease...so over the years Goldacre almost certainly has had opinions suggested to him over and over and maybe even he's been pointed to articles he might want to share, and all this has influenced his perception of these things.

So when patients and charities have said over the years that PACE was bad science and he should look into it, he hasn't and that has become his viewpoint. As with the people on the BadScience forum until a few academics started talking about it and raising issues their thoughts weren't going to change.

Same with Goldacre. But once you've got a viewpoint on something it takes four times the information the opposite way before your viewpoint actually shifts. More if other people are still feeding you their opposing views. He's probably been told that getting involved in ME/CFS will be a nightmare for him and that he'll start getting death threats. Of course, the opposite is true, he'd become a hero to everyone with ME/CFS and of course the idea that a quarter million people in the UK are sending death threats is a clear nonsense if you think about it logically. As noted on the BadScience forum ppl in our position need academics. It's why we're even discussing this: we want him involved, we'd value that. It would be good for him too.

Will Goldacre ecognise what has really been happening and will it be enough to overcome any conflicts of interest? The later part is down his character - I don't know the man, but the impression I get is that he's not corrupt. He'll end up on one side of history, I don't know which, but i don't think the critisicm of PACE is going away so he'll have to decide at some point. He has a little more time, I think, but there is a point coming soon, where he'd be too late and that would reflect poorly on his credibility as a voice against bad science and raise questions as to why he kept quiet.
 

user9876

Senior Member
Messages
4,556
D

I just didn't want to throw Goldacre under the bus as the blog was very good. I think under the right circumstances he or perhaps more to the point his stance on science studies could be an asset.

I tend to think of him as very establishment. He challenged alternative medicine and pharma but seems to avoid challenging the academic community. For example, All trials concentrates of pharma not publishing results but I'm pretty sure I read a paper that had done a survey showing the problem was a lot smaller than before and that publicly funded academic research was less likely to publish results. I find this blog slightly annoying in that they are doing good work but then just writing a letter to a journal to point out the issues. We have pointed things out to journals as have academics the journals don't seem to have an interest in correcting things. I don't see his project putting sufficient pressure on them to reform. An interesting service would be to offer this as part of a review service for journals to use and develop a 'quality mark' to be placed on papers that pass the test and for journals that only publish papers passing that test.

I wouldn't expect Goldacre to step in for us he has shown no inclination to do so (or for a heated debate on misreporting of CBT for psychosis). But there is a good quote in this tweet to say changing end points is bad. We should be using that quote 'Ben say's changing end points is wrong even with ME trials'.

I have a bigger issue with Goldacre which is his belief in RCTs and single outcome measures (to me we need multiple agreeing measures). I didn't like his suggestion that social policy should be explored via RCTs because they are just too hard to control for all factors and long term outcomes are difficult. The application of increasingly complex stats to control for various factors seems wrong to me especially when techniques are used without proper reference to assumptions. But then the issue is more with 'evidence based medicine' than Goldacre - How can you have such an approach without an underlying theory of evidence but they don't seem to look the large existing body of work on evidencial reasoning.
 

Esther12

Senior Member
Messages
13,774
I have never heard of Myhill doing anything inappropriate, though I don't particularly agree with her theories behind ME treatment.

Her promoting unfounded claims about ME and it's treatment is already pretty inappropriate. When I looked at her website, there was some dodgy stuff on there. I'm all for people being rude about doctors making unjustified claims about ME - but hard to see how one can justify prioritising some GP's website over the misleading claims made to patients about CBT/GET.