Norway: Article about ME seminar with security

[Esther12]

Sorry. I try not to post as much because I have trouble anticipating how people interpret what I write.

Antebellum. I'm afraid it's a US thing. Think "Gone With The Wind". A sort of built in cultural bias that helped sustain slavery in the US decades after it was abolished in the UK and many other European contemporaries - up to and even after the Us civil war..

So not good?

 

[duncan]

I'm sorry. We need people to protest horrific conditions created and maintained by others. I guess maybe it can be said "within the confines of the law." Matters of sustained oppression are difficult to resolve. I hesitate to judge the actions of one of our own unless that action was truly egregious - and especially when it has been so misappropriated by people who help feed, and profit from, our misery.

 

[Esther12]

I'm not drawn to the "one of our own" mentality. It seems like it's an important part of the way those in medical research respond to us, and does a lot of harm there. Maybe it's such an inevitable part of the way humans work that it cannot be avoided. If that's the case, I think we're pretty doomed.

 

[duncan]

I'm not drawn to the "one of our own" mentality. It seems like it's an important part of the way those in medical research respond to us, and does a lot of harm there. Maybe it's such an inevitable part of the way humans work that it cannot be avoided. If that's the case, I think we're pretty doomed.

Five decades so far of being doomed.

 

[cassava7]

People misrepresenting the incident, especially to try to smear a wider group of patients, is obviously terrible, but it's also important to recognise that throwing a coffee cup in anger is a bad thing to do and not the way people should behave when challenging researchers, no matter how those researchers have behaved. If patients aren't confident that they can control their temper then they should try to avoid placing themselves in advocacy situations they might find infuriating imo.

This incident reminds of Iraqi journalist Muntadhar al-Zaidi, who infamously threw a shoe at president Georges W. Bush during a press conference in 2008 to denounce the casualties of the Iraq War. He was condemned to three years of prison (reduced to one) and was eventually released after nine months.

However, it seems to me that the key differences between these incidents are the following:

• people might have better understood the reason of his action and identified / sympathized with him more (at least in retrospect) than a ME patient because of the lack of understanding of ME. They probably see this patient as a tired, mentally ill and maybe lazy person.
  
  
• Al-Zaidi planned his action (it was not a sudden burst of anger) and did so in a way that would maximize its visibility. The press conference was largely covered (and recorded) by the media, unlike the research conference.

Al-Zaidi became quite popular and also had the support of his countrymen — the head of the Iraqi Bar association represented him at the trial. Later, he went on to launch a humanitarian foundation (now seemingly defunct) and to this day, he has over 100 000 followers on Twitter.

I am not sure that all Iraqi people agreed with al-Zaidi’s gesture, but it seems to have delivered in terms of activism, especially in retrospect.

Unfortunately, because of the differences mentioned above, ME patients do not have the same sense of legitimacy in the eye of the general public and the frustration of ME pa. @Esther12 is right to point out that the mug throwing was only fuel for spin against us. Any violent, vindictive activism action needs to be thought of ahead of time if it ever is to take place, with a careful assessment of the pros and cons.

Here, what we, as patients, see as an understandable consequence of frustration, resulted more generally in a setback for ME awareness and strengthened the BPS researchers’ grip on the field.

It seems much more productive to keep to non-violent actions as they are much better regarded by the public. They can still be very disruptive, and also creative.

 

[Trish]

This incident reminds of the Iraqi journalist Muntadhar al-Zaidi, who infamously threw a shoe at president Georges W. Bush during a press conference in 2008 to denounce the casualties of the Iraq War.

It seems much more productive to keep to non-violent actions as they are much better regarded by the public. They can still be very disruptive, and also creative.

I don't understand why you have given this example. No one is suggesting planned acts of violence directed at individuals, not even throwing shoes. pwME are much more likely to have a silent demonstration where shoes are laid out on the ground to symbolise people too sick to be present at a demonstration.

As far as I know no one in the ME world is either planning or condoning any violent direct action aimed at any individual or group. What I was arguing for was some understanding that occasionally any one of us could be so provoked into anger or distress that we make some small spontaneous protest such as thumping a desk, or throwing a mug on the floor.

Of course that's not particularly helpful, but the blame as far as I'm concerned in such cases lies entirely with the person with the power over our lives and health who so misuses that power that it drives us to despair.

None of us who intends to behave well should be told not to go to such events because we might be driven to a momentary loss of control. None of us can be absolutely certain that person throwning down that cup might not be us one day. That's why I gave my personal example - because until that momentary loss of control I had no idea I could ever be provoked to act so out of character. I don't condone my action, but I understand and forgive it.

 

[cassava7]

I don't understand why you have given this example. No one is suggesting planned acts of violence directed at individuals, not even throwing shoes. pwME are much more likely to have a silent demonstration where shoes are laid out on the ground to symbolise people too sick to be present at a demonstration.

Indeed, noone is suggesting that a violent action should be planned, but one seemingly did occur out of frustration at this research conference. I wanted to highlight the differences between a successful (in the sense of activism) and a failed action, which is what this came to be depicted as even if it was not intended to be activism in the first place.

 

[Jonathan Edwards]

Do you not think it has helped powerful people dismiss and stigmatise the patients criticising them?

Do you not think that a culture where patients are all good with behaviour like this will make progress more difficult?

Really not, @Esther12.

I find this incident helpful and informative. Someone who goes to lecture to heckle in order to protect their malingering interests or as part of some political posturing or general obnoxiousness does not throw a cup on the floor like this. This is very clear evidence that the person is genuinely infuriated by pseudoscience. That the psychologists provoking the episode does not see this just confirms how much they are all about pseudoscience rather than understanding people.

I do not believe for a minute that this behaviour helps the BPS crowd convince others. They were going to do that anyway. The manipulation of opinion is part of a life long strategy. What the behaviour does do is make people like me motivated to write reports for NICE or join the government working party for research.

More than that it is a wake up call to people with all sorts of other neglected illnesses to believe that they might be able to turn things around in a really crappy healthcare situation. The passive approach of English patients to the medical profession is a laughing stock around the world. I have looked after enough foreigners to understand the alternative - stand your ground.

 

[cassava7]

None of us who intends to behave well should be told not to go to such events because we might be driven to a momentary loss of control. None of us can be absolutely certain that person throwning down that cup might not be us one day. That's why I gave my personal example - because until that momentary loss of control I had no idea I could ever be provoked to act so out of character. I don't condone my action, but I understand and forgive it.

It is expected that attending a biopsychosocial research conference on ME/CFS as a ME patient will be infuriating and that any form of anger will be weaponized against the patient community. Therefore, if one thinks that they might lose their temper at such an event, they should refrain from going to it — and maybe ask someone else — or implement preventative measures.

 

[cassava7]

What the behaviour does do is make people like me motivated to write reports for NICE or join the government working party for research.

If this were the case, would we not have expected to see a stream of medical doctors and scientists coming into the field of ME research when the accusations of heckling and harassment and started?

Rather, someone won a Maddox Prize for it and left the field in such a dire state that no researcher wanted to approach it.

 

[Jonathan Edwards]

Therefore, if one thinks that they might lose their temper at such an event, they should refrain from going to it — and maybe ask someone else — or implement preventative measures.

No way. That means nobody goes, just as the BPS people would like. Nobody would criticise the science.

This is real life. No harm was done. It is important that people make their feelings known. I think throwing a mug is exactly the right approach in the context, although precisely because it is not the sort of thing people would do because it is seen as such.

 

[Esther12]

This is very clear evidence that the person is genuinely infuriated by lies and trickery.

I don't think that's close to being true.

Lots of people protest for all sorts of misguided reasons. That doesn't prove anything.

This let those keen to try to avoid discussing the problems with their own behaviour point their colleagues to a broken door and repeat stigmatising tropes about ME/CFS and the dangerous threat anti-science patients pose to them.

No way. That means nobody goes, just as the BPS people would like. Nobody would criticise the science.

This is real life. No harm was done. It is important that people make their feelings known. I think throwing a mug is exactly the right approach in the context, although precisely because it is not the sort of thing people would do because it is seen as such.

There are lot of patients able to discuss the problems with this research, and the behaviour of researchers, without getting caught up in their anger and throwing things. I think that's probably easier for the people most aware of the value of doing so.

A mug being thrown like this should only be a small thing barely worthy of a mention, especially years later, but to have people acting as if it was a positive example of advocacy is, imo, really destructive. Especially if that view were to influence other patients.

 

[cassava7]

No way. That means nobody goes, just as the BPS people would like. Nobody would criticise the science.

This is real life. No harm was done. It is important that people make their feelings known. I think throwing a mug is exactly the right approach in the context, although precisely because it is not the sort of thing people would do because it is seen as such.

The point of attending a conference is to talk about science, and embarrassing a lecturer with good criticism of their work sounds like an effective activist action — especially when it boils down to pointing out very basic, first-year of university errors.

Further, harm could very well have been done in this case.

 

[Jonathan Edwards]

If this were the case, would we not have expected to see a stream of medical doctors and scientists coming into the field of ME research when the accusations of heckling and harassment and started?

Of course not. Doctors do not go into ME research because there are no leads. You cannot commit an early career to a subject where there is nothing to catch hold of.

The only reason I see the reality of the situation is that I have been around for 40 years and seen the politics and manipulation that my colleagues get into and I have let my naive ideas about the doctor patient relationship. I discovered that being a doctor should be all about learning year on year how ignorant one is. And that making major scientific advances is all about recognising that ignorance and asking what is missing.

So only in retirement can I be a useful contributor. I am disappointed there aren't many others.

 

[Jonathan Edwards]

Lots of people protest for all sorts of misguided reasons. That doesn't prove anything.

Not that way they don't @Esther12. And of course it isn't just the mug throwing, it is the whole story I have been hearing around this for so long.

I always think back to the 2014 Bristol CMRC conference where Peter White was qui9te unspeakably rude about patients to an audience which was half professionals and half patients. As I set there I thought. to myself why the hell aren't people 'throwing mugs'. It was absurd - inhuman. I kept my cool only because I had did not yet know the ground. If it was now I would have given what for. I simply do not understand why someone should not express their feelings in this way. I have seen it happen at medical meetings and in most cases it was very instructive and chastening. The idea that somehow this is 'bad form' is crazy. Doctors are supposed to be sensitive to these sorts of emotions - what the heck!!!

 

[cassava7]

Not that way they don't @Esther12. And of course it isn't just the mug throwing, it is the whole story I have been hearing around this for so long.

I always think back to the 2014 Bristol CMRC conference where Peter White was qui9te unspeakably rude about patients to an audience which was half professionals and half patients. As I set there I thought. to myself why the hell aren't people 'throwing mugs'. It was absurd - inhuman. I kept my cool only because I had did not yet know the ground. If it was now I would have given what for. I simply do not understand why someone should not express their feelings in this way. I have seen it happen at medical meetings and in most cases it was very instructive and chastening. The idea that somehow this is 'bad form' is crazy. Doctors are supposed to be sensitive to these sorts of emotions - what the heck!!!

I believe your own experience is insightful, @Jonathan Edwards. You came to this realization because the BPS spin on ME patients did not fit your values as a doctor. However, the general public respects doctors’ opinions, especially on subjects that they do not know much about, such as ME, and many people will simply take their word for granted (unless it influences them directly in a bothersome way, such as Covid related restrictions).

While activism needs to change minds on ME within medicine, it also needs to do so with the general public, and that is difficult if it abides by the mainstream medical opinion it has been presented with. Throwing a cup of coffee and similar actions might be seen as an act of frustration indeed, but people will side with medicine and see them as misguided rather than legitimate. I doubt that they will seek to understand the reasons behind them.

 

[Jonathan Edwards]

The point of attending a conference is to talk about science, and embarrassing a lecturer with good criticism of their work sounds like an effective activist action — especially when it boils down to pointing out very basic, first-year of university errors.

Water off a duck's back for the BPS people though. When academics want to talk drivel instead of science they are very good at gaterrhing their cronies around them to ensure the drivel is served up on a silver plate with garnish.

To refer to one of these people giving a lecture as a scientific meeting is a travesty. I would prefer some mug throwing any day.

 

[Jonathan Edwards]

Throwing a cup of coffee and similar actions might be seen as an act of frustration indeed, but people will side with medicine and see them as misguided rather than legitimate. I doubt that they will seek to understand the reasons behind them.

I don't believe that for a minute. I asked my wife what she thought over dinner and she could see immediately that the crime of the situation was the failure of the psychologist to understand what the mug throwing meant. If I present stuff on ME politics to people to ordinary people, as I did yesterday canvassing for DecodeME, they see the point pretty consistently. The problem is that most of the time they are bombarded with the media saying it is yuppie flu and oh so clever psychotherapists saying it is all BPS. People are fickle rather than anything. But they would understand the mug throwing perfectly if it was presented to them as it really happened.

And anyway, the stuff about ME people being militant doesn't really implying on the general public consciousness. It is just a meme used in medical circles to denigrate critics.

 

[Jonathan Edwards]

I wonder what @dave30th thinks about throwing mugs?
Are you up for it David?

 

[rvallee]

I don't believe that for a minute. I asked my wife what she thought over dinner and she could see immediately that the crime of the situation was the failure of the psychologist to understand what the mug throwing meant. If I present stuff on ME politics to people to ordinary people, as I did yesterday canvassing for DecodeME, they see the point pretty consistently. The problem is that most of the time they are bombarded with the media saying it is yuppie flu and oh so clever psychotherapists saying it is all BPS. People are fickle rather than anything. But they would understand the mug throwing perfectly if it was presented to them as it really happened.

And anyway, the stuff about ME people being militant doesn't really implying on the general public consciousness. It is just a meme used in medical circles to denigrate critics.

I have seen it in the wild a few times, so it does get out of the bubble a bit. Especially with journalists, who of course use the "leading experts" as the starting point to understand the issue, or probably get the same stories if they ask enough people. However within medicine it definitely had huge impact, at least as much as homophobic bigotry was problematic in dealing with AIDS, and far longer.

So it's not common outside the bubble, but it's out there. Hundreds of nasty headlines implying the worst do leave a mark, the same narrative spun, even if the details don't change since they're irrelevant, it's the innuendo that works. And then of course there are the grifters and gullible people who are using it to promote their business, that does affect the outside world.

And whatever category people like Fiona Fox fall in.