'Harassment' of researchers...

[Bob]

If there is a Tooting Popular Front for ME I haven’t come across them, though the demos would be fun … “What do we want? Much greater emphasis on biomedical research! When do we want it? Um … maybe a bit later, after a lie-down and some kefir, maybe tomorrow if we’re feeling up to it ...”

lol They sound great! How do we join the Tooting Popular Front?

 

[jimells]

As I say, The Telegraph piece is mostly pretty good, but that inappropriate diversion into an area which has nothing to do with the article’s billing “Here, he [Dr.S] talks about the latest research into the disorder” distorts the true picture and helps to perpetuate that “narrative of harassment”. It’s a crying shame.

This is the Science Media Centre at work (now coming to a country near you!). Many folks still think the purpose of the media is to inform us. And certainly there are still journalists who believe their goal is to "Comfort the Afflicted and Afflict the Comfortable". But that is not the goal of the establishment media. Their goal is the Manufacture of Consent, as detailed by the tireless Noam Chomsky. When viewed through this lens, establishment propaganda is easier to discern, and it's easier to read between the lines.

So he [Edward Bernays] wrote a book called Propaganda around 1925, and it starts off by saying he is applying the lessons of the first World War. The propaganda system of the first World War and this commission [Creel Commission] that he was part of showed, he says, it is possible to "regiment the public mind every bit as much as an army regiments their bodies." These new techniques of regimentation of minds, he said, had to be used by the intelligent minorities [Our Dear Leaders] in order to make sure that the slobs stay on the right course.

 

[sarah darwins]

It may have been a long time ago, but you certainly haven't lost the skills. Brava, Sarah, excellent post! I hope someday you'll feel up to writing some articles for PR. PR does pay, if not much.

You're very kind, SOC. I do hope one day to write a little on the subject, but one of the things that drove me out of journalism was the stubborn notion that before picking up a pen you should have some idea what you're talking about, a notion to which newsrooms in the IT age were fast becoming strangers.

I came to PR recently, after being ill for many years, and realised how little I knew. I'm hanging around in the hope of learning something. I'm currently working my way through the thread "Abnormalities of AMPK Activation and Glucose Uptake in Cultured Skeletal Muscle Cells", so the commitment is there. I'm just not quite ready to take questions on that one yet . I'd be grateful if someone can confirm that it's written in English.

 

[Snow Leopard]

And this really makes life difficult for those of us who interact with ordinary doctors and are trying to convince them that ME/CFS is not a mental health problem.

If they are suspecting mental health issues, then that is due to their own biases and preconceptions.

Harrassment, bullying, threats of violence are no joke and I wish it would cease. We live in a nasty world where someone would get death threats because they are advocating for a separated cycle track through London - or vice versa!

I wish people would speak out against harassment, bullying more because it is ubiquitous in our society. Perhaps if we all did speak up whenever we see or experienced it, then many people would realise the lines that they are crossing and how hurtful it is.

 

[alex3619]

I'd be grateful if someone can confirm that it's written in English.

I think the answer is - not quite. Specialized jargon can be considered a dialect and is taught in language schools, whether they be for learning Mandarin or biochemistry. There is even a special school for geek speak, but its a learn by throwing you in the deep end school. I am sure that journalism has its own specialist dialect.

 

[alex3619]

I wish people would speak out against harassment, bullying more because it is ubiquitous in our society.

My current hero for this is a young lady in Australia, a journalist, but I don't recall her name. She was getting very nasty comments and so found their mother and had a talk to her. End of problem.

 

[ahimsa]

... planning revolution (very slowly, with frequent rest breaks)

OMG, I laughed so hard at this!

The idea that we have some sort of super-organized ME/CFS community, a group that's able to plot some sort of revolution (with our brain fog on top of all the physical restrictions???), is so ridiculous that it's both funny and tragic at the same time.

It's the old situation about how if you don't laugh, you'll cry.

 

[Roy S]

There is a substantial amount of information that counters the well established narrative that Simon Wessely is the victim. This thread "Illustrations of threats issued by Simon Wessely" has some of it.
　
http://forumsphoenixrising.me/index...ons-of-threats-issued-by-simon-wessely.11631/
　
　

 

[medfeb]

Great historical reference, Roy. Thanks

 

[alex3619]

The idea that we have some sort of super-organized ME/CFS community, a group that's able to plot some sort of revolution (with our brain fog on top of all the physical restrictions???), is so ridiculous that it's both funny and tragic at the same time.

We cannot agree on a name. We cannot agree on a definition. We cannot agree on where to push our research. We cannot agree with those who support organization X, Y or Z. We are a fractured community, not at all organized. Even places like Phoenix Rising represent a huge diversity of opinion.

We all want answers. We all want a cure. We all want to be treated better. We just cannot agree on how to get there.

I love the use of satire to highlight the absurdity of some of these claims. There should be more of it.

 

[WillowJ]

I wish people would speak out against harassment, bullying more because it is ubiquitous in our society. Perhaps if we all did speak up whenever we see or experienced it, then many people would realise the lines that they are crossing and how hurtful it is.

True, maybe it is possible to do something about it.

And we should speak up about harassment, bullying, threats whenever it happens.

 

[IreneF]

Crawley posted her phone number on youtube and asked for patients concerned about her Lightning Process trial to speak to her, then complained on the radio that she got so many angry phone calls she had to get her number disconnected (she did not mention posting her number or asking people to ring) - she mentioned some other stuff that sounded very weak. White is always talking about the harassment of FOIs. McClure had someone send her a weird and nasty e-mail during the XMRV thing.

Also, there are things like @pam_das on twitter:

https://twitter.com/pam_das/status/573053011045580800

I'd have thought that there are loads of things like that. Oh - Max Pemberton was another good one. He claimed PACE showed 30% of people recovered with CBT/GET [later edited to 30% improved or recovered, or something like that], and that the main problem with CFS was trying to get people over-come their fear of the stigma of mental health care in order to engage with these highly effective treatments - when patients were angry about this he ran a column about how he had to go to the police for support and protection because people had googled his name with malice. He never acknowledge that his claims were just BS.

Googled his name with malice? This is a crime? How does anyone know how you are feeling when you use Google?

 

[alex3619]

Googled his name with malice?

Maybe they combined his name with the word "malice" on a Google search.

 

[Esther12]

Googled his name with malice? This is a crime? How does anyone know how you are feeling when you use Google?

Here's the article to let him speak for himself: http://www.telegraph.co.uk/news/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html

I was thinking of this bit: "It was brought to my attention that people had been discussing, via the internet, where I lived. My home is easily identifiable. Photographs of it had been posted online. The police became involved, and visited my flat to assess how secure it was. My telephone number and address were placed on a ''high-alert’’ rapid response list."

Pretty much everyone's address has been posted on-line, and so have photos of them. If you want someone's address, it's not normally hard to find. The police do tend to become involved if you contact them. Being placed on a high-alert rapid response list is the equivalent of a doctor's reassuring placebo.

The whole piece sounded like drama about nothing and failed to recognise that his initial article [now somewhat corrected] had falsely claimed PACE showed CBT and GET led to a recovery rate of 30%. Descend to quackery and you're going to piss patients off.

Someone posted tweets from him on twitter complaining about being bullied, when the tweets were just pointing out his factual errors. It was just laughable.

Stuff like that does make me feel more instinctively dismissive of concerns about ME terrorism.

 

[Sean]

The whole piece sounded like drama about nothing

Typical of a certain type of modern 'journalist', making out they are the noble brave seekers of truth, from the comfort of their overpaid middle-class armchairs. It is all about them.

 

[IreneF]

Here's the article to let him speak for himself: http://www.telegraph.co.uk/news/health/9559261/Why-few-dare-tackle-the-psychology-of-ME.html

I was thinking of this bit: "It was brought to my attention that people had been discussing, via the internet, where I lived. My home is easily identifiable. Photographs of it had been posted online. The police became involved, and visited my flat to assess how secure it was. My telephone number and address were placed on a ''high-alert’’ rapid response list."

Pretty much everyone's address has been posted on-line, and so have photos of them. If you want someone's address, it's not normally hard to find. The police do tend to become involved if you contact them. Being placed on a high-alert rapid response list is the equivalent of a doctor's reassuring placebo.

The whole piece sounded like drama about nothing and failed to recognise that his initial article [now somewhat corrected] had falsely claimed PACE showed CBT and GET led to a recovery rate of 30%. Descend to quackery and you're going to piss patients off.

Someone posted tweets from him on twitter complaining about being bullied, when the tweets were just pointing out his factual errors. It was just laughable.

Stuff like that does make me feel more instinctively dismissive of concerns about ME terrorism.

"Googling with malice" is what I would call doxxing.

 

[Roy S]

Pemberton's previous article starts out with this characterization which I don't believe is accurate or respectful. The 2011 media blitzkrieg was later found to have been carefully orchestrated by the Science Media Centre. They are good at what they do.
　
Jul 2011
"Many ME patients believe that research into possible psychological causes for their condition represents an attempt to downplay their symptoms."

http://www.telegraph.co.uk/news/hea...ers-receive-death-threats-from-sufferers.html
　
Many articles from the UK remind me of the weekly Prime Minister's questions which play on C-SPAN here in the US -- much political theater; often framing the debate by putting words into the opponent's mouth whilst adroitly (or not) avoiding the real issues.