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

Hip

Senior Member
Messages
17,820
My guess is that they are more put off by the dismal availability of research grants. That makes the prospect much more of a nonstarter than the possibility of unpleasant politics.

I agree, but the research grants issue is more what I meant regarding the politics of ME/CFS.

The corrupt politics of ME/CFS started in the 1980s, when there was a large increase in ME/CFS cases, and disability insurers as well as government social welfare departments got very worried about how much ME/CFS disability payouts would cost them. So they seized upon the very convenient "all in the mind" somatization views of ME/CFS that Wessely and his colleagues were promoting, as many insurers have clauses which stipulate that psychologically-caused conditions are not eligible for disability support.

So in essence, the bad politics revolve around using bad science or pseudoscience to dishonestly make it seem that ME/CFS is a psychologically-caused condition, in order to save billions on disability payouts.

The harassment and death threats that surrounded the XMRV fervor were just a very short episode of a few months in this many decade long history of bad politics. I agree that this unfortunate episode of harassment is unlikely to put off those wanting to enter ME/CFS research.

And I agree that the fact it is hard to get grants to do ME/CFS research will be off-putting to researchers. And we are only going to see an increase in grant awards when medical science becomes, well, scientific, and universally adopts a biomedical approach to ME/CFS, rather than the psychological pseudoscience of somatization.
 
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Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
I honestly believe that this has nothing to do with it. I'd be curious to see sources where a biomedical researcher said they avoided ME research for this specific reason. This seems to dominate the discussion in the UK, where stories of harassment come up at every opportunity, yet I've never heard of such a thing here in the US. I have to imagine that even Lipkin took some heat for the negative XMRV studies from true believers, yet he does not seem discouraged and instead has redoubled his efforts to research ME.

My guess is that they are more put off by the dismal availability of research grants. That makes the prospect much more of a nonstarter than the possibility of unpleasant politics.

I share those thoughts. With funding becoming more competitive, why would a young researcher focus on ME when it is likely to end their career (lack of funding to continue), than choose something that can more easily obtain funding? The only reason such young researchers choose this field is when they have close friends/family with the illness and even then it is rare.
 
Messages
724
Location
Yorkshire, England
Ben Goldacre is so selective about "bad science" he only wants to address bad science when he says its bad. When its on a plate for him with years worth of documented proof, abuse of patients, spin, lies and corporate fraud with political involvement he isn't interested.

Its very interesting that this keeps real bad science out of the mainstream consciousness and out of the media.

Over here this way, look this way, here it is everyone......dont look over there its here!!!!!

He is a magician.

That's how you make money from Bad science, being in the right club.

To add to your comment, I ask readers to look at this http://davidhealy.org/fucked/ (sorry mods if this language is inappropriate)

BONUS FEATURE; Ben Goldacre calling another campaign for transparency and access to data names and accusing them of abuse.
 

barbc56

Senior Member
Messages
3,657
If you are going to make an argument that BG is a a baddie, then at least play fair when making points. So many strawmen that it's ridiculous.

However you feel about BG, and we are all entitled to our opinion, it makes us look bad to use these facious arguments. This is really quite sad.

However, I am worried that as a child his first words weren't "I disagree with the pace trail". I think that's s a fair criticism.

Of course I am being sarcastic. But I'm trying to make a point. No disrespect intended as I'm taking about the the style of writing seen and not any particular person.

Is it any wonder that others are looking at us and saying 'Well those ditzy patients are at it again", But I may be doing the same thing, as I don't know if this true or not. None of us is immune to doing this and often without realizing it.

It's impossible to determine other's motives and to simply guess is pretty low.

Maybe some of this venting would be more appropriate in chat or PMs. I don't know the solution. Not all post, but some as the anger is justified. Rude comments on a public forum that is being watched by others and then what we say is used against us can be a slippery situation. There are other ways to word posts that make the same point.

I come from this as someone who was involved in debating during High School and College. So keep that in mind when reading this as some may think I'm criticizing just for the sake of argument. I'm not. This is something that just bugs me.

Aunt Sally never took such a thorough beating.
 
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Messages
2,087
@barbc56
I wouldn't worry too much about what we say here - it's nothing compared to what we say directly to Ben on Twitter :woot:

Did you know BG is now using bullying / harrassment from James Coyne as an excuse not to look into PACE. Funny thing is, Coyne has only been looking at PACE and challenging BG for the past few months whereas BG has ignored PACE for years.
Funny also that he is playing the victim and using the harassment card. Hmmm where have we heard that before.
 

Hip

Senior Member
Messages
17,820
Did you know BG is now using bullying / harrassment from James Coyne as an excuse not to look into PACE.

If you yourself were being goaded into doing something that you really did not want to do, a thing that you had no interest in, and a thing that had the potential to cause significant problems for your career and professional friendships, how would you personally respond? Would you do it just because of the goading?

I know if it were me, I'd say f..k off, just out of principle. That is because I don't like being told what to do with my life. So goading may actually backfire, and make it less likely that Ben Goldacre writes anything supportive of the ME/CFS patients' cause.
 
Messages
2,087
If you yourself were being goaded into doing something that you really did not want to do, a thing that you had no interest in, and a thing that had the potential to cause significant problems for your career and professional friendships, how would you personally respond? Would you do it just because of the goading?

I know if it were me, I'd say f..k off, just out of principle. That is because I don't like being told what to do with my life. So goading may actually backfire, and make it less likely that Ben Goldacre writes anything supportive of the ME/CFS patients' cause.

I agree but you said it yourself - he has no interest in it so it's not like this is putting him off. I'd probably have more respect if he said f off but he can't because of his image.

It's not goading, its pointing out the obvious.
 
Messages
1,055
If you yourself were being goaded into doing something that you really did not want to do, a thing that you had no interest in, and a thing that had the potential to cause significant problems for your career and professional friendships, how would you personally respond? Would you do it just because of the goading?

I know if it were me, I'd say f..k off, just out of principle. That is because I don't like being told what to do with my life. So goading may actually backfire, and make it less likely that Ben Goldacre writes anything supportive of the ME/CFS patients' cause.
This is true, it's not like the guy has taken to wearing a cape and sworn to defend science from the forces of darkness - he's just a bloke and has the right to choose his battles.
 
Messages
2,087
This is true, it's not like the guy has taken to wearing a cape and sworn to defend science from the forces of darkness - he's just a bloke and has the right to choose his battles.
Yes. I would say though that we are entitled to form opinions based on the battles he chooses. And that is generally what we are doing here.
 
Messages
1,055
We do need to keep it classy though don't we? Let the advocates who are in a safe enough position to stick their heads above the parapet do so and have the good grace to accept that those who aren't can't - however irritating!
My personal opinion is that strong-arming him will get nowhere apart from pissing the guy off and be a counter productive waste of our energy.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Rude comments on a public forum that is being watched by others and then what we say is used against us can be a slippery situation.

It doesn't matter to them what we say or don't say, 'cause they just make stuff up as needed. The unsubstantiated threats are a prime example.
 
Messages
2,087
We do need to keep it classy though don't we? Let the advocates who are in a safe enough position to stick their heads above the parapet do so and have the good grace to accept that those who aren't can't - however irritating!
My personal opinion is that strong-arming him will get nowhere apart from pissing the guy off and be a counter productive waste of our energy.
You may very well be correct. But I am less concerned about pissing him off than I am about raising awareness of the flaws of PACE. If James coyne pisses BG off but raises awareness for pwme I won't lose sleep over it.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
So goading may actually backfire, and make it less likely that Ben Goldacre writes anything supportive of the ME/CFS patients' cause.

He has made himself a target by climbing on a pedestal and proclaiming a Crusade Against Bad Science, while ignoring the huge scandal right in his own living room. Now he wants everyone to feel sorry for him?
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
My personal opinion is that strong-arming him will get nowhere apart from pissing the guy off and be a counter productive waste of our energy.

I dunno. Dr Coyne's public attacks are getting lots of attention, and Goldacre has finally admitted on Twitter that PACE may be flawed after all, so I'd say his strategy is working quite well.

We don't need Goldacre. We need attention from the broader academic community, and that is now happening.
 
Messages
1,055
Coyne has a safe platform to shoot from and seems to be thriving on the battle - pwME don't. Historically when the public lobbies for change it's called harassment or activism, but if respected scientists lobby for change it's called scientific discussion and progress.
My personal feeling is we're better off not getting demob happy now that the tide is turning. The end of this battle is in sight - the tactics of polite, reasoned contributions of well informed facts delivered where and when appropriate are winning through. If it aint broke don't fix it and our tactics aint broke! Let those that are fighting for us do what they can and let's cheer them on, thank them and give them the help they need to help us.
To make myself 100% clear I'm right behind Coyne's tactics, but I don't think pwME can use the same tactics he does without drawing criticism we can't risk.
 

Aurator

Senior Member
Messages
625
I don't think pwME can use the same tactics he does without drawing criticism we can't risk.
I get it; PwME have been repeatedly labelled as vexatious and unhinged by the BPS theorists as a way of undermining whatever criticism has been voiced against the seemingly unstoppable BPS juggernaut, so now, regardless of how unjustified those vexatious etc. labels have been, we all have to mind our p's and q's at all times in case there appears to be some substance to the accusations. Meanwhile Goldacre is free to say things like: "A good example of a tweet that a rabid anti-pharma conspiracy theorist will one day quote..."

The tactic of repeated slander was used by the Nazis against certain fellow citizens they chose to regard as "enemies of the state" in order to shut the minds of the majority of Germans to the possibility that this minority was actually being given a very raw deal.

Given the amount of slander PwME have had to contend with over the years, not to mention the woeful treatment they've had dished out to them, I think they do a remarkable job, generally speaking, in making so many polite, reasoned and well-informed comments among a minority of understandably indignant ones.
 
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jimells

Senior Member
Messages
2,009
Location
northern Maine
To make myself 100% clear I'm right behind Coyne's tactics, but I don't think pwME can use the same tactics he does without drawing criticism we can't risk.

The PACE People have given us a gift that keeps on giving. It's a gift I very much enjoy passing along to the Wessely School's "Amen Chorus" whenever I can:

Sharpe et al said:
http://www.ncbi.nlm.nih.gov/pubmed/26521770
Rehabilitative treatments for chronic fatigue syndrome: long-term follow-up from the PACE trial

There was little evidence of differences in outcomes between the randomised treatment groups at long-term follow-up.

It doesn't matter what we say or don't. The facts speak for themselves in simple unambiguous terms. But we need to keep repeating them.
 

barbc56

Senior Member
Messages
3,657
What @Mrs Sowester and @Hip said.

Let Coyne speak. We've been wanting someone credible/high profile for ages. Nine pages of bashing and goading BG will not get us anywhere. State your view, nothing wrong with that, but nine pages seems IMHO a bit excessive and repetitive.

I don't want to contribute more to this thread when I can spend my time advocating for the same issues in other ways.

Barb