Science Media Centre briefing on new Hornig, Lipkin et al. immune study

[Valentijn]

I am talking about looking at individual studies, such as the PACE trial and the Hornig et al study, and doing basic critical analyses on the issues I listed above, and others. I was taught this when I studied science, and other science students are - or should be - too. People here do it.

There's even a free Coursera course on how to read and understand medical research papers. It was short and simple - it's an easy thing for anyone to learn the basics. SMC doesn't have an excuse for their seeming ineptitude.

 

[Snowdrop]

So what difference if it's the MSC lies or the Chinese secret police messing with things? one is velvet glove, the other is an iron fist
still achieve their aims

Worse for us because 'the velvet glove' is so disingenuous. It takes longer to figure out that they really don't have your interests at heart.

 

[MeSci]

@MeSci
I can't myself see how the idea you are proposing, which is essentially what a peer review does before an individual study is deemed fit to publish, would prevent GET/CBT studies from appearing on the SMC website.

If the peer review process at the journal Psychological Medicine passed and published the PACE trial study of GET, CBT and pacing, how would a peer review at the SMC stop it?

It's a nice idea to think that the SMC could be a nexus of brilliant critical thinking, filtering out good science from bad, but I cannot myself see it working in practice.

The only thing that I think will put GET/CBT and the associated psychogenic view of ME/CFS in its place is the realization that this is a minority academic view on ME/CFS causality.

So if the SMC had a "meme democracy" regulation such that their expert opinions and views must be weighted in proportion to the percentage of people in the field holding each view, then that would tend to eliminate these "all in the mind" psychogenic ideas on ME/CFS from the SMC, since there are not that many of these wacky Wessely School academics about. Those that hold these psychogenic views are just a small group, albeit a small group very good at playing power politics (which is why their ideas are so well represented, despite their small size).

I'm not sure what you mean by 'stop it'.

If the SMC were unbiased and competent, they would provide their media customers with intelligent analyses of scientific papers. If we can analyse papers here, why on earth should a 'science media centre' not be able to?

I have already pointed out the potential biases present in the 'scientific community' due to the circularity of funding. See this comment from my blog, for example, about animal research (my bolding):

"Too many eminent laboratories and illustrious researchers have devoted entire lives to studying malignant diseases in mouse models and they are the ones reviewing each other's grants and deciding where the NIH money gets spent. They are not prepared to accept that mouse models are basically valueless for most of cancer therapeutics.

In the final analysis then, one of the main reasons we continue to stick to this archaic ethos is to obtain funding."

Azra Raza, M.D.
Professor of Medicine, Director of the MDS Center, Columbia University

The SMC also support animal research, and demonise those who object to it. Sound familiar? The same principles apply to other types of research which the establishment wants to discredit.

So if people can't get funding for what they want to do, they will often abandon the field that they want to research and either switch to different fields of research or get out of research altogether, in a similar way to people who object to animal research being filtered out at an early stage because establishments demand that they conduct animal experiments during their studies, or support the norm once they qualify.

Do you have evidence that

this (the psychogenic view of ME/CFS) is a minority academic view on ME/CFS causality

?

I don't have time to trawl through the studies, but I have come across a very large number of ME/CFS studies that are published in psychology journals.

 

[Hip]

I don't have time to trawl through the studies, but I have come across a very large number of ME/CFS studies that are published in psychology journals.

Undertaking psychological research on ME/CFS is not the same as holding psychogenic views on ME/CFS causality. It is the latter that ME/CFS patients are up in arms about, and many ME/CFS biomedical researchers vehemently disagree with.

ME/CFS is characterized by numerous debilitating cognitive and mental symptoms (as well as debilitating physical symptoms), so you would expect there to be psychological research on ME/CFS. But psychological symptoms per se do not automatically imply a psychological causality. Those are two different things. Many psychological symptoms can have biological causes, rather than psychological ones.

Indeed, as we move away from those quaint but ridiculous early 20th century Freudian et al type psychological explanations of mental conditions like bipolar, schizophrenia, etc, and move in the 21st century towards a biological, biochemical understanding of the origin of such mental conditions, we appreciate more and more how dysfunctional biological mechanisms can lead to psychological symptoms and mental conditions. And we observe how psychological symptoms often arise in neurological conditions such as multiple sclerosis or Parkinson's. So it is clear that neurology can profoundly affect psychology.

However, if you are stuck in the early 20th century, and believe that the psychological symptoms of ME/CFS are actually caused by psychological factors, then that is the psychogenic view on ME/CFS causality.

Psychogenic is defined as "having a psychological origin, rather than a physical one". It's only the Wessely School psychiatrists and a few others who seem to hold this psychogenic view on ME/CFS.

If you look the sum total of all the studies on ME/CFS, I think only a small percentage will be psychogenic research.

The SMC also support animal research, and demonise those who object to it. Sound familiar? The same principles apply to other types of research which the establishment wants to discredit.

Have the SMC demonized animal rights campaigners?

 

[MeSci]

Have the SMC demonized animal rights campaigners?

I just said they did. They have done it repeatedly and consistently. I suspect that they are a major force behind the refusal by the media to look at scientific arguments against animal research, and the constant repetitions and focus on alleged 'extremists'. In the UK, most violent behaviour on demos is in fact perpetrated by anarchists who infiltrate the demos, and nothing to do with the campaigners. Just look out for those in black hooded jackets, often carrying black or black-and-red flags, on UK media coverage of demos.

The focus and exaggeration relating to actual 'animal rights extremists' is perhaps only a little less extreme than the distortions applied to ME sufferers, who are tarred with essentially the same brush.

This is a topic I have examined closely over many years. The more that emerges, the more shocking it is.

 

[mango]

There's even a free Coursera course on how to read and understand medical research papers.

what's the name of that course? can anyone sign up? i've never used Coursera before, would love to know more.

 

[SOC]

Even leading experts in a field can have a hard time judging whether a given newly published paper is good science or bad science. It's often time that tells.

I have to firmly disagree with this statement. A published research scientist in any field can identify a bad science paper because it violates multiple basic principles of science, research, and publication.

Those are very complex and difficult things to do, and it is generally the role of experts in the field to perform these tasks.

No. Undergraduate students in solid science programs are taught how to properly review individual papers. Graduate students certainly learn how to do it. It does not require extreme expertise to tell whether a paper is good science or bad science.

It's not that hard to evaluate things like:

• Are the conclusions supported by the data? (PACE fail!)
• Is the hypothesis testable and falsifiable?
• Are the statistics appropriate to the subject and properly performed?
• Does the paper confuse correlation and causation?

And so on, and so on, as MeSci described above.

It's been years since I taught this, but I don't recall it being particularly difficult for undergraduates, or even high school students, to identify bad science papers given basic training on what to look for. Experts in any field can usually identify a bad science paper in any other field because it violates basic principles of scientific study and reporting. You don't have to have an in-depth knowledge of the topic to do that.

Even journalists can be taught to identify bad science papers. All it takes is a check list. They won't be as good at it as a trained scientist, but they could easily separate the wheat from the chaff.

Systematic reviews of literature have their place, but they do not measure whether an individual paper is good science or bad science. All they do is look at the overall landscape of published material on the topic. That's useful for someone who doesn't want to be bothered reading all the papers him/herself and just wants a feel for the current state of knowledge. The meat of published scientific knowledge is in the individual papers, not the overview.

@MeSci
I can't myself see how the idea you are proposing, which is essentially what a peer review does before an individual study is deemed fit to publish, would prevent GET/CBT studies from appearing on the SMC website.

If the peer review process at the journal Psychological Medicine passed and published the PACE trial study of GET, CBT and pacing, how would a peer review at the SMC stop it?

Peer review has failed dismally in the ME/CFS CBT/GET arena because of incestuous reviewing. Properly administered peer review does not use the same reviewers with a bias towards (or against) a particular viewpoint over and over. Properly administered peer review makes sure that the reviewer pool is either unbiased or at least has a balanced number of reviewers who support and reject the theory espoused by the paper. None of that happens in the publication of papers by the BPS school. This demonstrates severe bias, basic lack of scientific integrity, or plain laziness on the part of the publishers.

Properly administered peer review at the SMC could offset the bias in the peer review done by the BMJ, Lancet, Psychological Medicine, etc. But that would require that the SMC want get an unbiased view of the scientific topics and not be too lazy to do more than listen to the loudest screamers.

 

[Hip]

I have to firmly disagree with this statement. A published research scientist in any field can identify a bad science paper because it violates multiple basic principles of science, research, and publication.

Well I remember following virologist Vincent Racaniello's blogs on the ME/CFS XMRV studies, and seeing how he vacillated in his opinions regarding whether the research did or did not indicate that XMRV might play a role in ME/CFS. He even said in this article that:

First, that I make mistakes, and that I’m willing to admit it. Everyone does, including scientists. Second, if I had difficulties interpreting these papers, how would non-scientists fare?

It turned out that there were methodological flaws in the original XMRV paper, leading to contamination and spurious results, but it took a long time for this fact to be uncovered.

I don't see how this sort of thing could be uncovered on the spot by science journalists and media workers at the SMC, especially within their very tight publishing deadlines.


Another example: in the case of the Wakefield MMR autism study published in the Lancet, even though there was intense international scrutiny on this, it took 12 years before this paper was retracted, on the grounds that Wakefield fraudulently altered his data. So it was not easy to rout out this example of bad / fraudulent science. And interestingly enough, it was actually journalists (The Sunday Times) that uncovered the Wakefield fraud, not scientists.


In the case of the PACE trial for ME/CFS, freedom of information requests for the trial's raw data have been repeatedly turned down. I wonder why the PACE trial authors are so cagey about releasing the data from their study. Could it be that the authors have something to hide, because they also manipulated their data to show the result they wanted, as Wakefield did?

 

[Hip]

I just said they did. They have done it repeatedly and consistently.

What I implied was, can you refer me to a specific example of this demonization. The SMC merely supporting the pro-animal experimentation view is not demonization of animal rights campaigners.

most violent behaviour on demos is in fact perpetrated by anarchists who infiltrate the demos, and nothing to do with the campaigners.

I appreciate that. Many categories of demonstration unfortunately get infiltrated by a mob who view violence and property damage as a sport.

What about the animal rights fire bombers, though; you used to hear quite a few cases of these years ago; would you say that those were also anarchist infiltrators? Or were they from within the animal rights organizations?

scientific arguments against animal research

In terms of scientific arguments, what I would like to see from the animal rights campaigners is a good study examining whether the suffering of animals in science experiments is worse than the suffering these animals would experience living in the wild. Does such a study exist? For example, most animals in the wild will be regularly preyed upon by their natural predators. I imagine these are very fearful and stress inducing situations for the animals, trying to scamper away from being eaten by a predator. Just a few days ago in fact I witnessed a cat come into the garden and try to kill one of the wood pigeons that regularly come to eat the bird seed my elderly father puts out for them. The wood pigeon just barely escaped.

Of course, eventually animals may run out of luck in terms of escaping attack, and get struck down and eaten by their predators (except in the case of cat predators, which just seem to kill gratuitously without eating their prey). This can't be a particularly pleasant experience for the prey. Animals in the wild may also face hunger and disease.

I'd like to see a study examining whether life as a lab rat involves any greater or lesser pain or mental torment than life as a wild rat. Of course it might be hard to quantify animal pain and mental torment. Though a recent study showed that you may be able to quantify pain via fMRI scans.

If it is determined that a lab rat endures no more suffering than a wild rat, then that would make the animal rights arguments look a bit shaky.

On the other hand, if it is determined that a lab rat does suffer more than a wild rat, then what is the nature of that suffering? Is there anything that can be done to mitigate the suffering (eg: morphine)? And are there some type of lab experiments that involve much greater animal suffering than others? If so, would it be an idea for animal rights activists to focus on eliminating those specific experiments (if they have not done so already)?

 

[Valentijn]

what's the name of that course? can anyone sign up? i've never used Coursera before, would love to know more.

Understanding Research: An Overview for Health Professionals - https://www.coursera.org/course/researchforhealth

Anyone can make an account from anywhere in the world. If you go to the course and select "Future Sessions" under "Sessions" on the right side, you can then click on "Add to Watchlist". When a new course is offered of it, it'll send you an email to let you know when it starts, and then you can sign up for it.

The instructor is a nurse on the sociology side of things, which was mildly annoying at times, but it never got anywhere near Psychosomatic Land.

 

[mango]

Understanding Research: An Overview for Health Professionals - https://www.coursera.org/course/researchforhealth

excellent! thank you so much

 

[MeSci]

What I implied was, can you refer me to a specific example of this demonization. The SMC merely supporting the pro-animal experimentation view is not demonization of animal rights campaigners.

I'm sorry but this is going too far off topic. I just used the animal reference in my blog and referred to it briefly in relation to the SMC, to try to give a general picture. I have spent many years studying, campaigning and working in these fields and do not have time to discuss them elsewhere. I was referring to scientific arguments and you were taking it back to suffering and cruelty (not that they are unimportant). If you want to see some of the scientific arguments check out my blog and links and references from that.

If you search SMC for 'animal rights' you will find quote after quote on extremists and probably little or no quality scientific argument against animal experimentation. If you want the latter, you will find plenty on reputable animal advocacy sites such as Humane Society.

 

[Hip]

I have spent many years studying, campaigning and working in these fields and do not have time to discuss them elsewhere.

That's probably just as well, @MeSci, because although I would like to read your views in full, and then cross reference them with other sides of the argument, I just don't have the brain powder to take on board new subject areas like this, as I am sure you appreciate, as a fellow ME/CFS patient. Which is a shame, because I used to enjoy these sort of discussions.

I imagine that the degree of applicability of murine models to human disease will vary from one disease to the next.

Murine models may well be very applicable to studying ME/CFS:

If you look at Profs Nora Chapman and Steven Tracy's murine models of coxsackievirus B heart muscle infection (myocarditis), it would appear that these models were instrumental in facilitating their discovery of the non-cytolytic form of enterovirus infections in chronic coxsackievirus B myocarditis; they and Dr Chia think non-cytolytic enteroviruses may play a fundamental role in ME/CFS. Coxsackievirus B actually replicates very well in mice, so mice make good experimental models for studying chronic enterovirus infections.

I don't see why these researchers don't try to inoculate coxsackievirus B into the central nervous system of mice (rather than their heart muscle), to create an experimental model of ME/CFS. I have a hunch that injecting coxsackievirus B into the murine brain may well cause the mice to develop enterovirus-associated ME/CFS, because we know that coxsackievirus B is found in the brains of autopsied ME/CFS patients, but not in the brains of the controls.

 

[MeSci]

That's probably just as well, @MeSci, because although I would like to read your views in full, and then cross reference them with other sides of the argument, I just don't have the brain powder to take on board new subject areas like this, as I am sure you appreciate, as a fellow ME/CFS patient. Which is a shame, because I used to enjoy these sort of discussions.

I imagine that the degree of applicability of murine models to human disease will vary from one disease to the next.

Murine models may well be very applicable to studying ME/CFS:

If you look at Profs Nora Chapman and Steven Tracy's murine models of coxsackievirus B heart muscle infection (myocarditis), it would appear that these models were instrumental in facilitating their discovery of the non-cytolytic form of enterovirus infections in chronic coxsackievirus B myocarditis; they and Dr Chia think non-cytolytic enteroviruses may play a fundamental role in ME/CFS. Coxsackievirus B actually replicates very well in mice, so mice make good experimental models for studying chronic enterovirus infections.

I don't see why these researchers don't try to inoculate coxsackievirus B into the central nervous system of mice (rather than their heart muscle), to create an experimental model of ME/CFS. I have a hunch that injecting coxsackievirus B into the murine brain may well cause the mice to develop enterovirus-associated ME/CFS, because we know that coxsackievirus B is found in the brains of autopsied ME/CFS patients, but not in the brains of the controls.

I am sorry but I have done a lot more than imagining or taking other researchers' words for it with regard to animal 'models' for a long time. This is not the place to discuss it. I may be able to answer brief questions on relevant blog pages, but please read what I and many others have said there first. I am very busy.