Demonization of Patients continues: Nature Blog

[Ecoclimber]

Ahh, I had to laugh when I saw that the article was co-authored by Stephan Lewandowsky. He's so incompetent that he makes Wessley, White, Crawley et al look like Nobel Prize winners.

Given Lewandowsky's problems with people debunking his 'studies' and having them retracted, I'm surprised that he supports (albeit limited) data sharing.

I'm ill and am a bit busy this afternoon, so I can only provide a few examples for the moment:

Stephan Lewandowsky ‘flees’ Australia in wake of investigations
... at least two, possibly more, professional complaints that are in progress against Lewdandowsy (and his sidekick, Skeptical Science’ s John Cook) at the University of Western Australia for his data fabrication and his questionable science

Update: Lewandowsky et al paper on conspiracist ideation “provisionally removed” due to complaints
​

He may talk the talk, but he doesn't walk the walk when it comes to data sharing:

Ask Stephan Lewandowsky anything, except “please can I have that data”.
Richard Tol asked Stephan Lewandowsky how he felt about data. Stephan Lewandowsky replied with exactly the right answer, saying it’s crucial, and “I release all relevant data immediately”. Then Barry Woods quoted the Vice Chancellor of UWA refusing to provide Lewandowsky’s data (after many requests). Apparently it is UWA practice not to release data, no matter how many times researchers politely enquire. How unfortunate for Stephan to have worked at such a backward institution?​

and my favourite:

Lewandowsky peer reviewed study includes someone 32,757 years old
​

I'm happy for anyone to pass this information onto James Coyne if you think he might be interested.

​

Thanks for the info, it was helpful and well used #researchparasites

 

[Esther12]

Although I think some other bits of Lewandowky's work are pretty shit, it's risky for us to be critical of him as he tends to go for soft, unpopular targets (and that's not to say that they do not deserve to be unpopular, even if he can target them in underhand ways). We're already a stigmatised group I'm afraid, so some caution may be justified.

 

[BurnA]

Although I think some other bits of Lewandowky's work are pretty shit, it's risky for us to be critical of him as he tends to go for soft, unpopular targets (and that's not to say that they do not deserve to be unpopular, even if he can target them in underhand ways). We're already a stigmatised group I'm afraid, so some caution may be justified.

I understand you sentiment and maybe I am naive but I am totally against being quiet because of fear of rebuttal. This is one of the contributing factors to our situation - many doctors and others don't speak up for us because they fear rebuttal or condemnation. We can't do the same thing ourselves. We have nothing to fear if we speak the truth. Nobody should scare us into silence, our opinions are valid especially when we are backed up by science.

 

[Ecoclimber]

Although I think some other bits of Lewandowky's work are pretty shit, it's risky for us to be critical of him as he tends to go for soft, unpopular targets (and that's not to say that they do not deserve to be unpopular, even if he can target them in underhand ways). We're already a stigmatised group I'm afraid, so some caution may be justified.

We all have different tatics and strategies. Perhaps, unbeknownst to you, a tweet by .@WesselyS supported Lewandosky blog on denying data access and belittling the ME/CFS patient community

I will give no quarter to a medical establishment that supports 'professionals' that exhibit an elitist, misogynist 18th -19th century viewpoint by demonizing an entire patient population with arrogance, contempt and maginalization. These so called 'professionals' should hand in their license and find another occupation more suited for them. The harm to patients is inculculable. Unethical narcissistic behavior, manipulation of data that harms patients, undeclared competing interests, etc.violates the core foundation of the medical profession. Allowing such professionals to practice, violates the core of the hippocratic oath:

I swear to fulfill, to the best of my ability and judgment, this covenant:...

I will respect the hard-won scientific gains of those physicians in whose steps I walk, and gladly share such knowledge as is mine with those who are to follow.

I will apply, for the benefit of the sick, all measures which are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug.

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

I will respect the privacy of my patients, for their problems are not disclosed to me that the world may know. Most especially must I tread with care in matters of life and death. If it is given me to save a life, all thanks. But it may also be within my power to take a life; this awesome responsibility must be faced with great humility and awareness of my own frailty. Above all, I must not play at God.

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

I will prevent disease whenever I can, for prevention is preferable to cure.

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.
If I do not violate this oath, may I enjoy life and art, respected while I live and remembered with affection thereafter. May I always act so as to preserve the finest traditions of my calling and may I long experience the joy of healing those who seek my help.

Unfortunately, this oath should be relegated to the trash bin of history as it's rarely enforced or rarely practiced in real life. The reality is that very few medical professionals are censured. File a complaint with the medical board and the 'good ole boys club' kicks in and censure or lost of license is denied except for the most egregious cases. Indoctrination begins in medical schools with a 'god' like attitude and their training certainly reflects it. The establishment protects them. The pressure, decline in prestige, and lost of control through HMO practices have probably contributed to this attitude among a great majority of doctors.

It is still no excuse as it causes deep psychological harms to sick patients which should never be tolerated.

 

[Woolie]

Although I think some other bits of Lewandowky's work are pretty shit, it's risky for us to be critical of him as he tends to go for soft, unpopular targets (and that's not to say that they do not deserve to be unpopular, even if he can target them in underhand ways). We're already a stigmatised group I'm afraid, so some caution may be justified.

He was a brilliant cognitive psychologist (memory theory etc.). Really good. Don't know why he did the career change.

 

[Esther12]

I understand you sentiment and maybe I am naive but I am totally against being quiet because of fear of rebuttal. This is one of the contributing factors to our situation - many doctors and others don't speak up for us because they fear rebuttal or condemnation. We can't do the same thing ourselves. We have nothing to fear if we speak the truth. Nobody should scare us into silence, our opinions are valid especially when we are backed up by science.

I'm more talking about what it's best to do as a CFS advocate. I'd encourage people to argue about anything that they think is wrong when away from any sort of CFS advocacy, but taking on lots of unpopular positions on controversial matters when you have a credibility problem to start off with does risk meaning that people are even less likely to listen to what you have to say.

I do slightly dislike myself for encouraging a degree of cowardice here, but tbh, we've got enough problems as it is.

He was a brilliant cognitive psychologist (memory theory etc.). Really good. Don't know why he did the career change.

I didn't know that. I've only read his more political stuff, which seemed amazingly bad.

I've just wikipedia'd him (I couldn't believe he'd done good stuff!) - I remember thinking that his Iraq war study was rubbish too. I did read it a long time ago, and when I knew almost nothing about psychology, but again I had thought that it seemed designed to get the results for reasons of political propaganda, which is the same problem I have with his later work. That was probably one of the first psych papers I ever read.

 

[BurnA]

@Esther12 We dont have a credibility problem - it's not our fault people dont want to accept the truth.
I really think its awful when people here seem to be afraid to speak up ( not saying you are ) because this is exactly what the psycho lobby want - they are delighted to keep us quiet. Remember, the people who label us vexatious are the only ones who have a vested interest in keeping us quiet.
We need to be more vocal and not be afraid of upsetting anyone, because guess what, nobody cares about us anyway.

I am not pointing the finger at you by any means but it's a general observation I have.

We don't need to fear anyone.

 

[Esther12]

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.

I don't think that we should let these prejudices prevent us from speaking out about problems with the way CFS is treated, but it would mean that I think it's sensible to avoid mixing that with making complicated and easily misunderstood points about other unpopular causes eg: slagging off Lewandowky's work on climate change deniers.

 

[BurnA]

I don't think people are choosing wilfully not to believe us - instead they are being manipulated by you know who. Therefore I think we need our own campaign of truth - maybe with a pr machine behind us. But no matter how we do it we need to speak up.

 

[Woolie]

I don't think people are choosing wilfully not to believe us - instead they are being manipulated by you know who. Therefore I think we need our own campaign of truth - maybe with a pr machine behind us. But no matter how we do it we need to speak up.

I think people are talking at cross purposes here. My impression is that @Esther12 is talking about the climate change debate and whether we as a patient group should get involved in any way. I say NOOOOO!

 

[L'engle]

I say NOOOOO!

Read that in a sheep's voice. But I definitely agree.

 

[Woolie]

Read that in a sheep's voice. But I definitely agree.

Would that be "Naaaaaaa" then?

 

[Sean]

You're all very baa-aa-aad little sheepkins.

But seriously, as ME/CFS patients we should stay as far away from climate change stuff as possible. It is of no relevance and will only contaminate our advocacy.

 

[Esther12]

[QUOTE="Sean, post: 690322, member: 722"
But seriously, as ME/CFS patients we should stay as far away from climate change stuff as possible. It is of no relevance and will only contaminate our advocacy.[/QUOTE]

A lot of us have trouble with staying warm... a few degrees won't hurt!

 

[Sean]

I'll swap you some of my steamy tropical monsoon weather, for some of your winter chill. There must be a nice comfortable average somewhere in between where we can meet.

 

[Woolie]

Ironically enough, this is what's going on down here:

Flock of sheep helps police end 90-minute car chase in New Zealand
http://www.theguardian.com/world/20...police-end-90-minute-car-chase-in-new-zealand

 

[Roy S]

https://twitter.com/i/web/status/692129221146230784

 

[Roy S]

https://twitter.com/i/web/status/692204161128099845

 

[Roy S]

htt

https://twitter.com/i/web/status/691813464940122112

ps://mobile.twitter.com/joe90kane/status/691813464940122112?p=p

 

[adreno]

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.