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

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
The problem with analyzing the SMC is that we have no real idea about what is going on inside the organization or in people's thoughts. What we can argue is failures that are demonstrable in evidence in the public domain. We can show probable bias in specific instances, but we cannot show what is causing that bias, only put forward (more or less well supported) hypotheses. We might be able to show a pattern of bias, but that would take a lot of work.

This kind of emphasis does not rule out serious bias and even conspiracies, but what it does is put emphasis on demonstrating what can be demonstrated, rather than speculating on this that cannot be proven at this point in time.

Bring on the whistleblowers. If something really dodgy is going on at the core, that is how it will be found, unless we get really lucking and key documents come to light.

Now this is entirely different from how much I trust this organization. I have no trust in almost anything from there because I have seen too many problems with prior press releases.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
Not only will this recent study perhaps lead to treatment....

I am SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO
looking forward to all the psychobabble bastards getting hit with the biggest mother of a class action lawsuit, and negligent homicide ones for some as well

"Revenge is a dish best served by a frozen cactus up their bunghole!"


flash-gordon-04.jpg


:D
 

Hip

Senior Member
Messages
17,824
I was trying to find out if there were any formal mechanisms or regulatory bodies that operate to maintain neutrality in the SMC, but did not come across any.

Given the increasing influence of the SMC, if there are not any such regulatory systems at present, then this may be something that needs to be instigated.

Because provided that the SMC accurately reflect the opinion of the scientific community, then the SMC cannot be accused of being biased. So there should be transparent regulatory mechanisms in place that check to see if the SMC are properly representing scientific community opinion, including the relative weight of each opinion.

Of course, if in some quarters people disagree with the opinion of the scientific community itself — and in fact lots of people in Europe seem to disagree with the scientific views regarding the safety of GM foods — that is outside of science, and so not the concern of the SMC. The SMC just need to accurately represent the views of the scientific community, but no further than that. If that community is pro-GM, then it is perfectly fine and appropriate for the SMC to reflect the pro-GM stance.

It is then the job of the newspapers and TV to cover the general public's anti-GM side of the argument, as well as covering the scientific community's pro-GM view.
 
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alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
class action lawsuit
Better than Christmas!

They are often protected under law though. I very much doubt we can retrospectively sue them. What I think is likely is we can sue them as more and more evidence is published, largely for ineptitude as they will be unaware of what is known.

Now, and I have been thinking about this, most institutions in psychiatry are not protected under law as well as the practitioners. It may be possible to sue the institutions they work for, as they permit poor and dangerous medical practices and these occasion harm. So sue the institutes, the hospitals, the corporations!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
.

Nobody regulates the SMC - the SMC is a law unto itself.
.
The SMC is a private institute and so only regulated by things that regulate private institutes, companies etc. Basically, there is legal redress from harm, and there is political redress if you can ever find enough motivated politicians. There are things like the press council but they are toothless I think.

PS There is also the media itself. The more bad practices become apparent to the media, the less journalists will trust them. The SMC may in the end be its own worst enemy, and implode.
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Can we just go ahead and start calling it the Straw-man centre?
Still fits as SMC ;)
If I see that old chestnut one more time that equates dissent about ME with "not believing in mental illnesses" I might just go ahead and lose my mind
 

Kyla

ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ
Messages
721
Location
Canada
Can we just go ahead and start calling it the Straw-man centre?
Still fits as SMC ;)
If I see that old chestnut one more time that equates dissent about ME with "not believing in mental illnesses" I might just go ahead and lose my mind
Oops, I actually meant to put this in the thread about the SMC reply to the MEaction letter. Oh well, fits here too I guess
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
A lot of people seem to be ignoring the elephant in the room - the funding bodies - so I will list some here. I apologise in advance for any errors, but I have something like a migraine which makes it difficult to find words and to understand what is written. I haven't been able to fully read or understand the latest messages yet.
Industry and trade bodies are the largest contributing group (27%). Of course, one would need to look carefully at who is funding what, and how funding is distributed - is there a central fund or do different funders fund different issues?

If any of this doesn't make sense, I apologise again. I hope to be more compos mentis later.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I think that might be asking a bit too much from journalists and media workers. 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 don't see why it would be so hard to analyse scientific studies in the way that science students are (or should be) taught to do.

Thus they should look at things like:
  • Whether there is a good hypothesis (not necessarily crucial in all types of research, as unexpected findings can be very informative)
  • Whether there is a well-selected, good-enough study group
  • Whether the research is on the right species (!), whether it is on patients, or in vitro, or computer modelling, etc.
  • Whether the methods are good and justified
  • Whether the analysis (including statistics) is good
  • Whether the conclusions are justified
The SMC does not seem to do this, and I suspect that they don't know how to (or don't want to).
Also, if you started filling the SMC with scientific experts in their fields, then that could actually introduce a great deal more scientific bias into the SMC. This is because most experts have their own strong opinions about their subject. We see this in ME/CFS research, where for example Dr Chia believes ME/CFS is mainly caused by enteroviruses, whereas Prof Montoya focuses on the Herpesviridae infections in ME/CFS, and so forth. No single ME/CFS expert would ever have an unbiased view of ME/CFS.

I disagree. There are plenty of ME/CFS scientists who have very open minds, and scientists from different specialisms collaborate a great deal.
Journalists do a far better job at being unbiased, in my experience; journalists tend to have a very broad range of interests and knowledge, and are often less partisan in their views.

I know because I used go out with a Latin American journalist for 10 years, so got to know dozens of journalists. Journalists seem to be characterized by this intense curiosity and eclectic interests, and love exploring the world. I got on very well with them, as I used to have lot of curiosity and eclectic preoccupations myself (before viral infection and ME/CFS turned my brain to mush).

We are talking here about a UK organisation and UK journalists. These are very far from being unbiased, as has been revealed in recent scandals and inquiries.
What they could do at the Science Media Centre to reduce bias is perhaps survey the viewpoints of all the experts they employ. For each important scientific field, especially the controversial subjects (like vaccines, GM food, nuclear energy, etc), the SMC could enumerate beforehand the major scientific viewpoints held in each field, and then ensure that the number of expert comments they provide from each viewpoint is roughly proportionate to the number of researchers in the field that hold that particular viewpoint.

So if 20% of researchers in a scientific field subscribe to viewpoint A, and the other 80% subscribe to viewpoint B, then the number of expert comments provided by the SMC should reflect this, and be in the same ratio.

That would ensure the SMC are accurately reflecting the views, and the relative weight of each view, of the scientific community they are charged with representing in the media.

If they did this, then the psychogenic views of ME/CFS may not get much of a look-in on the SMC website, because I think this psychogenic perspective of ME/CFS is a minority one, if you take into account the ME/CFS research community worldwide.

That looks theoretically like a good idea. I don't know how easy it would be to achieve.
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I was trying to find out if there were any formal mechanisms or regulatory bodies that operate to maintain neutrality in the SMC, but did not come across any.

Given the increasing influence of the SMC, if there are not any such regulatory systems at present, then this may be something that needs to be instigated.

Because provided that the SMC accurately reflect the opinion of the scientific community, then the SMC cannot be accused of being biased. So there should be transparent regulatory mechanisms in place that check to see if the SMC are properly representing scientific community opinion, including the relative weight of each opinion.

Of course, if in some quarters people disagree with the opinion of the scientific community itself — and in fact lots of people in Europe seem to disagree with the scientific views regarding the safety of GM foods — that is outside of science, and so not the concern of the SMC. The SMC just need to accurately represent the views of the scientific community, but no further than that. If that community is pro-GM, then it is perfectly fine and appropriate for the SMC to reflect the pro-GM stance.

It is then the job of the newspapers and TV to cover the general public's anti-GM side of the argument, as well as covering the scientific community's pro-GM view.

Again, this is theoretically a good idea, but given the circularity that we see in funding, and the paucity of funding into the biology of ME/CFS, there is a likelihood that the 'scientific community' will turn out to be heavily biased towards the type of research that is most likely to get funding. In fact there are articles in scientific journals and elsewhere that report such biases. Charities too are often mouthpieces for pharmaceutical companies, which has also been reported.
 

Hip

Senior Member
Messages
17,824
I don't see why it would be so hard to analyse scientific studies in the way that science students are (or should be) taught to do.

Thus they should look at things like:
  • Whether there is a good hypothesis (not necessarily crucial in all types of research, as unexpected findings can be very informative)
  • Whether there is a well-selected, good-enough study group
  • Whether the research is on the right species (!), whether it is on patients, or in vitro, or computer modelling, etc.
  • Whether the methods are good and justified
  • Whether the analysis (including statistics) is good
  • Whether the conclusions are justified
The SMC does not seem to do this, and I suspect that they don't know how to (or don't want to).

Those are very complex and difficult things to do, and it is generally the role of experts in the field to perform these tasks. These tasks are usually done by means of systematic reviews — ie, scientific papers that survey all the individual studies published on a given subject, and by examining the quality and methods of each published study, and taking balanced view of the overall weight of evidence given in all these individual studies, the authors of the systematic review will come to a conclusion regarding that subject. I am sure you aware of this.

For example, a systematic review of the efficacy of a particular drug for treating depression will review all the studies measuring the antidepressant effect of that drug, and then come to an overall conclusion, based on the weight of evidence, of the efficacy of that drug.

If you've have ever tried to edit a Wikipedia medical article, which can be a pitched battle when it comes to controversial subjects like ME/CFS, you'll know that there is a rule on Wikipedia medical stating that the conclusions from single studies (called primary sources) do not carry the same weight as the conclusions from systematic reviews (called secondary sources). So on Wikipedia, there are weights of truth. Which sort of makes sense, because as we know, the result of a single study can often be spurious, so it's not until there are several replication studies that more solid evidence is accrued. A review examines all the studies and replication studies in a given area.

This rule is the reason that the Wikipedia page on chronic fatigue syndrome always had a strong GET/CBT slant, because it is unfortunately the case that there are systematic reviews purporting to show the efficacy of GET/CBT for ME/CFS (even though individual GET/CBT studies used dubious and unreliable methods — see Beth Smith's criticism here), so this means that by the rules of Wikipedia, the secondary source reviews of GET/CBT would trump single primary source studies like Montoya's study showing the efficacy of Valcyte for ME/CFS patients.

I tried editing the Wikipedia ME/CFS article some years ago, adding references to studies showing viral associations to ME/CFS, only to find that the editors there with a pro-psychogenic view of ME/CFS then promptly deleted all that I wrote, saying that my writing was not back up by secondary sources. That sort of thing makes me so fumingly angry, that I decided not to get involved with any further editing on Wikipedia. I did not want to waste any more of my time. There was no sense of a harmonious collaborative effort in that article, just a fierce turf war.

Though the idea that Wikipedia medical should reflect more the secondary rather than primary sources is basically a sound one.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
MeSci said
I don't see why it would be so hard to analyse scientific studies in the way that science students are (or should be) taught to do.

Thus they should look at things like:
  • Whether there is a good hypothesis (not necessarily crucial in all types of research, as unexpected findings can be very informative)
  • Whether there is a well-selected, good-enough study group
  • Whether the research is on the right species (!), whether it is on patients, or in vitro, or computer modelling, etc.
  • Whether the methods are good and justified
  • Whether the analysis (including statistics) is good
  • Whether the conclusions are justified
The SMC does not seem to do this, and I suspect that they don't know how to (or don't want to).
Those are very complex and difficult things to do, and it is generally the role of experts in the field to perform these tasks. These tasks are usually done by means of systematic reviews — ie, scientific papers that survey all the individual studies published on a given subject, and by examining the quality and methods of each published study, and taking balanced view of the overall weight of evidence given in all these individual studies, the authors of the systematic review will come to a conclusion regarding that subject. I am sure you aware of this.

I am not talking about systematic reviews that look at multiple studies. 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.

We need to go back, as I have said before, to scientifically-literate journalists who can do these analyses and stop relying on intermediaries. There are some such journalists and media contributors, some of them proper scientists who are also still working in the fields - of research, lecturing, etc.
 
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SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
You will also have trouble, because there are paid "churnalists" and agents spouting the official line, the corporate line etc
It's not just the Chinese government who do such, far far from it.
Note how Wikipedia caught some of it's "contributors" out as being paid for shills, and plenty of documentary evidence now of companies altering wiki and many online things to suit a "client's needs".

"1984" was childish compared to the web if lies designed to control that we live in.

ME/CFS is a problem so they make it GO AWAY....as I've said like recent name change bullshit, and that's often how they do it best, gull honest folk, take over or manipulate movements and groups to sideline them into blind alleys and causing less trouble.

If the Metropolitan Police of London would waste the extremely expensive time and resources of undercover agents to infiltrate middle of the road middle class, respectable peaceful climate change groups and then CRIMINALLY push them into "criminal trespass" so they could be arrested by their under cover cop illeglaly acting as an agent provocateur...
why the HELL do folk not realize that the NSA, MI6, corporations who *use and pay for their services or members* (What do you think Snowden was about?) as well as huge PR firms who pay buttons to micro-workers across the Globe to spew "fog", bureaucracies who's leaders want more political power or to cut budgets etc, will all in the end, to some extents, trigger cascades of crap against all kinds of things, even ME/CFS.

Just recently a film about serious pollution worries in China "disappeared".
MSC are against exposure of pollution problems as they are against the environmentalist movement and are gung-ho hard core for technology at ANY cost.
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

they're all in bed with each other at varying levels and degrees, all about money and influence

  • Something causes Sir Bob at "RatBastard Chemical Co" a problem,
  • well he then gets onto his "friend" Rt Ho Jim Hacker MP to do something about it (Rt Ho Jim Hacker MP also has a lot of shares in Ratbastard Chemical Co in his wife's name, to avoid notice)
  • next, Rt Ho Jim hacker MP tells his private secretary Sir Humphrey to "do something about it".
  • Sir Humphrey passes the word around at his golf club, orders his "plausible deniability" consultancy firm to do something about it, and they have someone alter Wiki, or pay journalists bribes to tell a story or whatever.

("Yes Minister" really did touch on the truth, lol. Just like "Callan" did.)

So yeah, ME/CFS is *channelled* to the Public as much as the scum can do, it's not about stopping it, that would be too obvious, they don't deal in or want "suicides" for this kind of thing (that is extremely rare but does happen for other stuff, see Frank Olson and recent prosecutor's death in Argentina), all they need is to cause
  • Fear
  • Uncertainty
  • Doubt
People think that's not possible...no, it's how the world has ALWAYS worked behind closed doors.
SMC is just a modern version of it, Julius Caesar would have used them if he was around now like he did his "whispering agents" and graffiti artists.
 
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MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
This looks like quite a thorough guide to critical scientific analysis. A more basic understanding and method would probably suffice for a newspaper/media article.

I haven't looked in detail, or checked out the people running the website.
 

Hip

Senior Member
Messages
17,824
@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. Journalism is driven by tight deadlines and time contraints.


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).
 
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