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Demonization of Patients continues: Nature Blog

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
A lot of people do have prejudices about CFS, and that means that we do have a credibility problem. Probably more so in the UK than elsewhere, but I don't think it right to say that 'we don't have a credibility problem' anywhere right now.

The credibility problem is mostly due to a lack of science. Lack of demonstrated illness = lack of credibility.

We're stuck in a catch-22.
 
Messages
2,087
I think we are missing the point. The point is not whether PWME believe in climate change, but whether we orchestrate and direct aggressive campaigns against ME researchers, similar to what has (allegedly) happened in a few other fields. We don't, and that's the myth we want to challenge.

Yes - but there are some differences. We have every right to be vocal and vexatious - science is on our side. We are sick patients who need help and the current advice in the form of CBT/ GET is at best ineffectiive and at worst makes our condition worse.
Secondly in our effort to dispel this myth we must be careful not to end up being too meek.
I don't mind the fact that we are associated with orchestrated campaigns against researchers. If we didn't do this we would be failing our duty. It comes down to definitions of campaigns. Is James Coyne and David Tullers activism a campaign ? I would say so. Is it aimed at researchers - i would say so. Do i have any problem with it - absolutely not.
So lets not be too afraid. As long as we have a voice people might listen. If we lose our voice its over. Lets not be told how to behave by the very people who want us to behave in a specific way (which doesnt make them look bad.)
 
Messages
15,786
The credibility problem is mostly due to a lack of science.
The psychobabblers also lack science backing up their stance - far more so than is the case regarding biological ME/CFS research. Yet they are given so much credibility that they are allowed to destroy our credibility without question.

Our problems in the media, and with doctors, and with people on the street has nothing to do with science. It has to do with the overwhelming publicity which has been given to the psychobabblers' spin.

Countering that with science is one approach, but the more effective approach is to respond in kind: to kick up a fuss, to get noticed, to get visibly outraged every time some douchebag says something which would be unthinkable to say publicly about any other disease or patient group. It's what happens when there's a slur of other diseases - so what are people going to think if someone says disgusting things about ME patients, and instead of the expected outrage they get a polite cough and a lengthy technical disagreement? The clueless readers are going to wonder if those disgusting statements are accurate, regardless of the science or logic.

That's not to say that we should be writing those appalling lengthy rants which thankfully only a special few still seem to favor. But we should not constantly be on the defense. If they say something nasty and unfounded, why waste our finger strength writing a scientific reply "proving" them wrong? When they're engaging in vicious and open bigotry, we should be publicly labeling them as the bigots that they are. They need to be just as hesitant to slur patient groups as they are to slur other minority groups. And we should ensure that it has the same consequences when they do.

If we go around acting like we have a credibility problem, then we obviously will appear to have a credibility problem. Yes, we don't need to borrow other peoples' fights and tie it in with ME/CFS (we didn't, the authors did), but we do need to appear completely confident and completely justified in responding to those who attack us.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
Yes, it's a funny thing about the Global Warming story - if one actually looks at the evidence for Global Warming, it looks a lot like the evidence from the psychobabblers...
I am not convinced the climate change science is wrong, but it needs to be treated as risk not proven. At least some of it is dubious, but that does not mean all of it is dubious. I am however deeply suspicious of consensus views. That is a leap out of science and into politics and management. The science and the politics need to have clear demarcations.

A big problem with psychobabble is it entrenches itself into government and institutions. At that point Zombie Science, which includes the funding of science by policy and not merit, becomes a real concern. When bad science, and nonscience, become policy, then the outcomes are less than favourable.
 
Messages
2,087
The psychobabblers also lack science backing up their stance - far more so than is the case regarding biological ME/CFS research. Yet they are given so much credibility that they are allowed to destroy our credibility without question.

Our problems in the media, and with doctors, and with people on the street has nothing to do with science. It has to do with the overwhelming publicity which has been given to the psychobabblers' spin.

Countering that with science is one approach, but the more effective approach is to respond in kind: to kick up a fuss, to get noticed, to get visibly outraged every time some douchebag says something which would be unthinkable to say publicly about any other disease or patient group. It's what happens when there's a slur of other diseases - so what are people going to think if someone says disgusting things about ME patients, and instead of the expected outrage they get a polite cough and a lengthy technical disagreement? The clueless readers are going to wonder if those disgusting statements are accurate, regardless of the science or logic.

That's not to say that we should be writing those appalling lengthy rants which thankfully only a special few still seem to favor. But we should not constantly be on the defense. If they say something nasty and unfounded, why waste our finger strength writing a scientific reply "proving" them wrong? When they're engaging in vicious and open bigotry, we should be publicly labeling them as the bigots that they are. They need to be just as hesitant to slur patient groups as they are to slur other minority groups. And we should ensure that it has the same consequences when they do.

If we go around acting like we have a credibility problem, then we obviously will appear to have a credibility problem. Yes, we don't need to borrow other peoples' fights and tie it in with ME/CFS (we didn't, the authors did), but we do need to appear completely confident and completely justified in responding to those who attack us.

I couldn't agree more.
I am disappointed that none of the charities speaks up more and in a more vociferous tone. Every nonsense news article and PR that gets released should be met with force which outlines all the flaws/errors/fraud ? in the psycho lobbys approach. Its not like we don't have any ammo. They only have to drop in a few nuggets like " conflicts of interest", "illness definition" "releasing of data" "redefining recovery" etc.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
Our problems in the media, and with doctors, and with people on the street has nothing to do with science. It has to do with the overwhelming publicity which has been given to the psychobabblers' spin.

I agree that perception and opinion of a disease is often disconnected from the science.
It isn't just the psychobabblers though, it's journalists, medical professionals, politicians etc who simply don't care - they have no sympathy for us unless one of us happens to be close to them. One of the reasons for that is because medicine in the 20th century said demonstrated organic disease = legitimate and everything else is illegitimate.

Most people and that includes most medical professionals form opinions biased by societal beliefs, their preconceived moral ideas etc. Very few people read the primary literature and understand it, since it requires both time, experience and high intelligence. Whether their opinion is true or not doesn't affect them at all - they have no skin in the game and thus can continue to hold BS beliefs.
 

chipmunk1

Senior Member
Messages
765
http://www.theguardian.com/commenti...-irving-murder-disability-hate-crime-increase

It is not just that these crimes appear more horrific because the victims are disabled. But rather the abuse is often more horrific because the victim is disabled. Research shows that disabled people are more likely to experience “particularly sadistic” treatment: sustained attacks that involve dehumanising humiliation, torture, and degradation.

Interestingly psychobabble often seems to target the most helpless and vulnerable individuals.
 

SilverbladeTE

Senior Member
Messages
3,043
Location
Somewhere near Glasgow, Scotland
http://www.theguardian.com/commenti...-irving-murder-disability-hate-crime-increase



Interestingly psychobabble often seems to target the most helpless and vulnerable individuals.
Standard Operating Procedure for bullies
they always go for victims they believe aren't going to fight back

like it or not people, in this life, someone bullies you, you try to talk to them out of it first but NOT by being nice, you make it abundantly clear you have will and means to hit back, you have ot show them you have some spine.
Bullies are ALWAYS insecure, and most are cowards.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
It isn't just the psychobabblers though, it's journalists, medical professionals, politicians etc who simply don't care - they have no sympathy for us unless one of us happens to be close to them. One of the reasons for that is because medicine in the 20th century said demonstrated organic disease = legitimate and everything else is illegitimate.

Another reason is that we live in a hierarchical society, so by definition somebody has to be at the bottom.
 

Daisymay

Senior Member
Messages
754
Professor Stephan Lewandowsky works at the University of Bristol. I wonder if he knows Dr Esther Crawley?

http://www.bris.ac.uk/news/2013/9330.html

http://www.bristol.ac.uk/expsych/people/stephan-lewandowsky/research.html

Professor Stephen Lewandowsky - Research


I am a cognitive scientist with an interest in computational modeling. That is, I try to understand how the mind works by writing computer simulations of our memory and decision-making processes. Recently, I have become interested in how people update their memories if things they believe turn out to be false. This has led me to examine the persistence of misinformation in society, and how myths and misinformation can spread. I have become particularly interested in the variables that determine whether or not people accept scientific evidence, for example surrounding vaccinations or climate science.

 
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Countrygirl

Senior Member
Messages
5,429
Location
UK
Professor Stephan Lewandowsky works at the University of Bristol. I wonder if he knows Dr Esther Crawley?

http://www.bris.ac.uk/news/2013/9330.html

http://www.bristol.ac.uk/expsych/people/stephan-lewandowsky/research.html

Professor Stephen Lewandowsky - Research


I am a cognitive scientist with an interest in computational modeling. That is, I try to understand how the mind works by writing computer simulations of our memory and decision-making processes. Recently, I have become interested in how people update their memories if things they believe turn out to be false. This has led me to examine the persistence of misinformation in society, and how myths and misinformation can spread. I have become particularly interested in the variables that determine whether or not people accept scientific evidence, for example surrounding vaccinations or climate science.


And Prof Dorothy Bishop works with Wessely at the SMC. They're all in bed together..................:eek:.............noooo!.....I retract that statement...........................the image it creates is just too....................traumatic.
 

Art Vandelay

Senior Member
Messages
470
Location
Australia
As noted elsewhere, the psycho-babblers have been using the same tactics as some involved in climate science to discredit people with ME/CFS. These include: claiming that polite requests for data constitute 'harassment', making false allegations of death threats, and arguing that they don't have to share their data. Lewandowsky has been very much involved in this in Australia.

The Wessley school's smearing tactics have been so successful in the UK that virtually no-one in the British medical establishment and the media will touch people with ME/CFS with a bargepole. It's pretty telling that our biggest advocates in the UK have either retired or are Americans and thus have less to fear from the establishment.
 
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Art Vandelay

Senior Member
Messages
470
Location
Australia
I am not convinced the climate change science is wrong, but it needs to be treated as risk not proven. At least some of it is dubious, but that does not mean all of it is dubious. I am however deeply suspicious of consensus views. That is a leap out of science and into politics and management. The science and the politics need to have clear demarcations.

A big problem with psychobabble is it entrenches itself into government and institutions. At that point Zombie Science, which includes the funding of science by policy and not merit, becomes a real concern. When bad science, and nonscience, become policy, then the outcomes are less than favourable.

All of us have first-hand experience with the bad science when it comes to ME/CFS particularly when it comes to:
  • lack of transparency;
  • smearing opponents (rather than debating the science);
  • small, incestuous groups of researchers who peer-review each other's work;
  • studies that have proven to be wrong have not been corrected or retracted; and
  • what Alex refers to as 'zombie science'.
In my view, there's no reason not to think that these problems don't exist in other branches of science. (Indeed, it seems likely that this is the rule rather than the exception.)

Re zombie science, in my former life I worked on environmental policy for many years. We caught politicians, NGOs, scientists, the media and bureaucrats lying, exaggerating, and misrepresenting the science on a daily basis. We were even removed from working on a particular issue at the behest of the Prime Minister's department because we asked too many questions and insisted on evidence (ie, we did our job). It was eye-opening.

These days, I think it's wise to maintain a healthy level of scepticism.
 
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Messages
3,263
@Art Vandelay, I'm not a climate sceptic, I personally think the evidence is pretty persuasive. But at the same time, I'm not that keen on any type of work that tries to psychologise those that take a minority view, whatever the topic.

So okay to talk about barriers to change, but when you start talking about the characteristics of a particular group of people, you're in dangerous waters.
 

A.B.

Senior Member
Messages
3,780
#1 There is a grass roots campaign by patients, advocates, and academics to challenge the bad science produced by the Wessely school in large quantities.

#2 There is no campaign to harass researchers.

The distinction is important.

The Wessely school attempts to conflate #1 and #2 at every opportunity because it distracts from their indefensibly bad science and discourages critics from speaking out.
 
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Ecoclimber

Senior Member
Messages
1,011
If you lump climate deniers with terrorists in your blog or by tweet, not a smart move politically or career wise on the part of researchers. Some of the climate deniers happpen to be major corporations, Exon, BP, Koch Brothers worth $80B and the GOP.
 
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