'Harassment' of researchers...

[alex3619]

Anyone who dares to speak out against the current medical climate can be targeted, and then ignored and dismissed.

Demonize your opposition and then they become powerless as they will not be listened to.

 

[Snowdrop]

Personally I think BPS is in danger of becoming the new Eugenics movement. Weak science in combination with powerful political forces can get out of hand.

I think this should be taken as a real and viable concern. I think that statements made by BPS should be stashed with references to original documents kept and shared so that they cannot hide. It's almost beyond belief that FOI requests can be denied so easily.
Lack of transparency is very concerning. PWME in the UK very much need a champion. Someone outside the community. A journalist who knows how to write something real not fluff.

In reference to harassment (real or imagined) though, my preference is to keep the holding-to-account legal and above-board. That does not mean it needs to be polite (they certainly aren't), or gentle. It should be legal and honest. There's enough ammo in that vein that we shouldn't have to resort to self-defeating lies and physical threats. Threats of legal action, OTOH, are quite legit in my book.

Yes, how can this be done? Does anyone in the UK have any idea?

With you all the way there. Keep it legal and ethical, but robust and unrelenting.

Yes, unrelenting is what it will take.

 

[Gijs]

Without any breakthrough the problem with the Wessely school don't change. It is prestige and honor. I think we will never see any real breakthrough at that time we are all dead. It is gonna take at least another 50 till 100 years before we reach that point. Maybe this point will never come. This disease is to complicated and seems invisible. We are all grazy till that time

 

[Hip]

Even if they don't specifically say that the entire patient population is involved in a campaign of harassment, their propaganda allows the media and medical professions to lazily dismiss the entire patient population as being somehow unbalanced and not worthy of respect.

Whatever Simon Wessely & Co say, the actual effect of the threats of violence, in the minds of the media and medical profession, may ultimately be positive. The whole history of humanity shows that when a group of people are oppressed and treated badly, violence may erupt to some degree or other (perhaps with the very notable exception of Gandhi in South Africa).

The actual presence of violence in a political struggle is I think seen, in the minds of most people, as a thermometer of the heat and severity in that struggle. It also indicates that the people you are trying to oppress are not going to give in so easily.

So although the media and most ME/CFS patients themselves will rightly condemn violence or threats of violence, in fact these incidents may have some positive outcome, such as highlighting the plight of this oppressed group, and of showing that the ME/CFS community are not going to give in without a fight.

Let me hasten to add that I am not at all condoning threats of violence, I am just trying to analyze the effect of their presence in the political struggle ME/CFS patients are engaging in.



What I do find very distasteful is when innocent parties get targeted, as @charles shepherd did himself, and as did virologists such as Myra McClure, whose negative results in finding XMRV in ME/CFS patients led to a barrage of abuse.

One reason why such innocent people may inadvertently get caught up in the anger and aggression might be because of conspiracy theory thinking: some ME/CFS patients may assume the whole system is conspiring against them. This conspiracy thinking is unfortunate, but in fact it is not entirely unwarranted, in that there is ample evidence showing that the disability insurance industry may have worked hard, with a very big helping hand from the Wessely School, to portray ME/CFS as an "all in the mind" psychosomatic condition, in order to avoid disability payouts.

So once you have this underhanded play from the disability / income protection insurance industry, it's perhaps not surprising that some ME/CFS patients may imagine possible nefarious activity behind every negative outcome in ME/CFS research.

Had the insurance industry been aboveboard in their actions, it would have been a different story. But because the insurance industry seems to have engaged in these well-known underhanded activities for many years, this breaks down trust, and creates all these bad politics.

Indeed, long before these threats of violence appeared in recent years, scientists were often discouraged from making a career in ME/CFS research because of the bad politics in this field.

 

[redviper]

Whatever Simon Wessely & Co say, the actual effect of the threats of violence, in the minds of the media and medical profession, may ultimately be positive. The whole history of humanity shows that when a group of people are oppressed and treated badly, violence may erupt to some degree or other (perhaps with the very notable exception of Gandhi in South Africa).

The actual presence of violence in a political struggle is seen, in the minds of most people, as a thermometer of the heat and severity in that struggle. It also indicates that the people you are trying to oppress are not going to give in so easily.

So although the media and most ME/CFS patients themselves will rightly condemn violence or threats of violence, in fact these incidents may have some positive outcome, such as highlighting the plight of this oppressed group, and of showing that the ME/CFS community are not going to give in without a fight.

Let me hasten to add that I am not at all condoning threats of violence, I am just trying to analyze the effect of their presence in the political struggle ME/CFS patients are engaging in.



What I do find very distasteful is when innocent parties get targeted, as @charles shepherd did himself, and as did virologists such as Myra McClure, whose negative results in finding XMRV in ME/CFS patients led to a barrage of abuse.

One reason why such innocent people may inadvertently get caught up in the anger and aggression might be because of conspiracy theory thinking: some ME/CFS patients may assume the whole system is conspiring against them. This conspiracy thinking is unfortunate, but in fact it is not entirely unwarranted, in that there is ample evidence showing that the disability insurance industry may have worked hard, with a very big helping hand from the Wessely School, to portray ME/CFS as an "all in the mind" psychosomatic condition, in order to avoid disability payouts.

So once you have this underhanded play from the disability / income protection insurance industry, it's perhaps not surprising that some ME/CFS patients may imagine possible nefarious activity behind every negative outcome in ME/CFS research.

Had the insurance industry been aboveboard in their actions, it would have been a different story. But because the insurance industry seems to have engaged in these well-known underhanded activities for many years, this breaks down trust, and creates all these bad politics.

Indeed, long before these threats of violence appeared in recent years, scientists were often discouraged from making a career in ME/CFS research because of the bad politics in this field.

I would completely agree with this statement. During the course of human history you have had a variety of different marginalized and oppressed groups that have had a militant wing that has been critical to achieving their objectives, but few groups of people have faced the unique systemic barriers and insurmountable hurdles that our community is currently dealing with. When you consider the financial commitment and incentives for insurance companies, pharmaceutical companies, and the CBT community, it's fairly obvious that one-track advocacy is not the solution to overcoming the unprecedented challenges the ME community faces. Although the ME community is dispersed geographically, it's not unfair to compare the struggle our community faces to marginalized and targeted ethic groups around the world, many of whom contain a militant faction, in addition to a political faction, and a humanitarian faction, etc.

I feel I should highlight that I'm not condoning violence in any way, but for a variety of reasons the ME community has taken a relatively passive approach to advocacy over the last couple of decades. I personally believe those days are done, people have watched too many of their friends taken their own lives or suffer endlessly to continue with the same strategy of advocacy. Some will be encouraged by recent scientific improvements, but I think you are going to continue to see a more pro-active ME community emerge until there are significant improvements in the quality of life of ME patients.

 

[redviper]

Demonize your opposition and then they become powerless as they will not be listened to.

Only if you allow the oppressors to control the narrative, which often happens in western culture where money is often directly related to influence.

 

[alex3619]

Some will be encouraged by recent scientific improvements, but I think you are going to continue to see a more pro-active ME community emerge until there are significant improvements in the quality of life of ME patients.

I would like to think so. However I think we are too sick, and lack cohesion as a community. I would also like to see legal and nonviolent means ... but there are lots of option within those two restrictions. Legal means do not necessarily mean law suits either, just not being against the law.

What the late Thomas Hennessy said, and he is one of our fallen warriors, is we lack critical mass.. The single most important thing for advocacy is to get out there and let other patients know what is what.

Advocacy does have to be well thought out though in order to be really effective. Maybe if we had ten times as many people then we could get somewhere. Projects languish as our health waxes and wanes, and as new demands on our limited energy appear.

I do agree that we have been remarkably calm and non-confrontational given the scale of what is going on. I think that goes to being sick, and perhaps being bewildered and feeling disempowered. It is not due to a lack of righteous anger.

 

[alex3619]

Only if you allow the oppressors to control the narrative, which often happens in western culture where money is often directly related to influence.

I partly agree. Its not just about money, its about the status quo. We are outside the established concerns. We are a violation to the work ethic, as the more we do the less we can do. We do not fit with societal norms. We are perceived as a financial threat by many in some industries and some parts of government. So money and influence play a big part, but being the outsider is a big part of it too. All tens of millions of us are essentially outsiders. If we could get organized we would have more people than many nations.

Lets not forget either that it takes time for us to believe what is happening to us, and we live it. It so violates our standard of normal that we have trouble accepting it. Most of the public have a much lower chance of really grasping the issues than we do ... there is a huge barrier in how things are perceived, and this goes far beyond ME itself. If we take months to years to decades to figure out and accept what is going on, if we ever do, then how is Mr or Mrs Average going to get there? Or most bureaucrats?

 

[alex3619]

Only if you allow the oppressors to control the narrative, which often happens in western culture where money is often directly related to influence.

On controlling the narrative, there was a debate on how to do this some years back somewhere on these forums. If the argument is framed within one perspective, its seen one way. If framed in a different perspective, it can be seen a different way. What sparked this off was discussion of someone called Lakoff, and I read one of his books on categorization as part of my PhD candidature. Lately he has been turning his ideas about language into political discussions. Lakoff is all about changing how arguments are framed.

 

[redviper]

I would like to think so. However I think we are too sick, and lack cohesion as a community. I would also like to see legal and nonviolent means ... but there are lots of option within those two restrictions. Legal means do not necessarily mean law suits either, just not being against the law.

What the late Thomas Hennessy said, and he is one of our fallen warriors, is we lack critical mass.. The single most important thing for advocacy is to get out there and let other patients know what is what.

Advocacy does have to be well thought out though in order to be really effective. Maybe if we had ten times as many people then we could get somewhere. Projects languish as our health waxes and wanes, and as new demands on our limited energy appear.

I do agree that we have been remarkably calm and non-confrontational given the scale of what is going on. I think that goes to being sick, and perhaps being bewildered and feeling disempowered. It is not due to a lack of righteous anger.

Yes, I agree with everything you stated. The health of patients in the ME community is the biggest obstacle to mounting a successful and relentless advocacy campaign, which is pretty much what is needed to overcome the hurdles we are facing. I would argue that is even more reason for our movement to think "outside the box" in terms of achieving our goals.

 

[Sidereal]

No one should be sending anyone death threats; that goes without saying. If researchers really are getting threats then this is appalling.

But I have very little sympathy for any researcher receiving annoying FOI requests or angry emails. Cry me a river. Oppressed and marginalised groups have been portrayed as mentally ill, emotional, hysterical etc since time immemorial in order to shut them up and keep them enslaved. What are we supposed to do? Lie in our beds like good little serfs and never raise our voices when the latest garbage piece of "research" comes out, nod slavishly to our consultant masters as they contaminate our medical records with lies, innuendo, outright fabrications etc.?

These psychobabblers' fake research has ruined people's lives, stripped them of livelihoods, relationships, dignity, everything. Many of us have been shunned by even our own families. Some have been pushed into severe permanent disability and 24/7 agony as a result of this research. Some are too weak to feed themselves or lift a water bottle. Many have died of suicide and other causes. This community has been remarkably restrained and well-behaved, all things considered.

 

[redviper]

On controlling the narrative, there was a debate on how to do this some years back somewhere on these forums. If the argument is framed within one perspective, its seen one way. If framed in a different perspective, it can be seen a different way. What sparked this off was discussion of someone called Lakoff, and I read one of his books on categorization as part of my PhD candidature. Lately he has been turning his ideas about language into political discussions. Lakoff is all about changing how arguments are framed.

Most of the times when people discuss controlling the narrative, it is in respect to political elections or social issues, when you have two opposite sides of an issue that are at least relatively comparable in strength/resources/numbers. Unfortunately that's not the case for the ME community, where you have a huge alliance of different self-serving interests essentially oppressing a relatively small group of patients. It's much harder to control the narrative when there is such a disparity between the forces involved.

 

[Snowdrop]

Recognised the name. For anyone interested here he is: http://georgelakoff.com/

 

[alex3619]

I would argue that is even more reason for our movement to think "outside the box" in terms of achieving our goals.

Definitely.

 

[cfsStevew]

Hmm... I've thought about this and perhaps I wasn't strictly 100% accurate, but I don't think I was being unfair... Although they do indeed often say that most patients are happy with the way they are treated, their words still have a negative effect on the entire patient community. Even if they don't specifically say that the entire patient population is involved in a campaign of harassment, their propaganda allows the media and medical professions to lazily dismiss the entire patient population as being somehow unbalanced and not worthy of respect.

The clear and unambiguous message is always that ME/CFS is a dangerous field to be involved in because of the alleged threats and abuse - more dangerous than working in Afghanistan. There is little nuance. There's no attempt to say that it's a few isolated incidents. And when legitimate FOI requests and scientific discourse (such as respectful academic letters published in the Lancet) are included in these allegations of a campaign of harassment, then there is clearly an attempt to silence all dissenting voices.

So I would say that they do (directly or indirectly) effectively tar the entire patient community with the same brush, especially if anyone in the community dares to speak out about the treatment they receive. And it's not just patients who they direct their comments at - ordinary and decent patient support organisations are targeted as well - perhaps not labelled as extremists but they are often denigrated or labelled as resistant to science etc. Anyone who dares to speak out against the current medical climate can be targeted, and then ignored and dismissed.

yes this is basically what has happened it seems to me. Its appauling how glib Wessely can be and how he often speaks about researchers being put off - when his psychogenic model put off researchers the most and incited most of the abuse in the first place.

I would like to think so. However I think we are too sick, and lack cohesion as a community. .

Yes I agree. Its a pleasure to be discussing this issue with people on this forum who know a lot - but I have to say - previously I might have been afraid. Afraid of saying the wrong thing, or making a naive comment etc - and initiate an angry reaction from other sufferers.
I think part of the way to bring cohesiveness is to help others understand the issues we face - which is a case of organizing the education. There are people on this forum for example that know an awful lot - but unless this knowledge is distilled and focused into digestible prose -and backed up with reasonable evidence - then it can take a huge amount of time for some people to really get their head around the political situation. One of the biggest moments for me was Voices From the shadows - we need more of that in different formats. Its all very well to get annoyed when people dont understand - but I think even with limited energy - it could be possible to make a very compelling case for all that is discussed here. I mean - apart from a personal struggle for us - I think its also a story of real intrigue...that needs to be told...over and over...

 

[Sidereal]

But in the context of the grotesque systemic decades-long mistreatment of literally millions of sick, vulnerable, innocent patients by the authorities (and their media lackeys), what is really remarkable is that there has been so little serious harassment and payback from us patients, that we have been so patient and restrained in the face of this flood of ruthless provocation and abuse.

I find it hard to believe that psychobabblers genuinely feel unsafe because of ME/CFS patients. As psychiatrists and nurses they would have endured verbal and sometimes physical abuse on the wards. Not one psychobabbler has to my knowledge claimed to have been physically assaulted by an ME/CFS patient. We've heard of claims of threats but that's it. "You'll pay for what you've done". Emails full of f words. Okay, that sucks, but go work in a locked psych ward for a month and see how many times you get verbally abused, spat at, kicked, bitten etc. To say you feel more unsafe working with ME/CFS patients is a tendentious, politically useful lie unless you're diagnosing a bunch of PTSD ridden veterans or mentally ill or personality disordered civilians with this illness. In that case, well, it's to be expected and it's no worse than what you'd deal with anyway.

On the other hand, how many times have ME/CFS patients dealt with direct threats to their wellbeing and livelihoods due to incompetent treatment or psych ward imprisonment by our ivory tower masters? All the time. I've escaped relatively unscathed compared to many of my fellow patients but I've still had to deal with my share of mentally ill, alcoholic, dementing, incompetent, malicious physicians knowing full well I couldn't go crying to the cops when they verbally abused me or threatened to call my employer to tell him I couldn't handle the stress of my job and developed a psychosomatic illness as a result. I am not joking, this actually happened.

 

[Sean]

What are we supposed to do? Lie in our beds like good little serfs and never raise our voices when the latest garbage piece of "research" comes out, nod slavishly to our consultant masters as they contaminate our medical records with lies, innuendo, outright fabrications etc.?

Naughty bad serf. Just eat your gruel, and keep shovelling that pig shit.

 

[Gijs]

Wessely is just like Robert A. Kehoe.

 

[sarah darwins]

I really like cfsStevew’s phrase “the narrative of harassment”. It gets right to the heart of the problem, our world's obsession with drawing narratives out of the fog of human experience. Nobody does it like the news media. They’ve become almost antithetical to their notional purpose, the seeking of truth, instead distorting it through the building of narratives to the point where really significant issues slide out of sight behind relative trivia. A headline saying “Death Threats to Doc for speaking out over ‘Chronic Fatigue’” works much better than “Psychiatrist floats unevidenced theory; many people disagree”.

In 2012 The Telegraph did an interview piece with Dr. Charles Shepherd (who writes, sensibly as ever, above). It’s mostly a pretty good piece, but the interviewer can’t resist throwing in a couple of completely unnecessary paragraphs about “militancy” (referencing The Telegraph’s own Max Pemberton, of course) and apparently asking Dr.Shepherd about it. The writer also suggests that “.. unlike some on the militant fringes of the ME community, he [Dr.Shepherd] prefers to use reasoned persuasion rather than threats when discussing the cause.” [http://www.telegraph.co.uk/news/hea...-all-in-the-mind-but-its-still-a-mystery.html]

“Militant fringes”? "ME community”? “prefers to use reasoned persuasion rather than threats”? Those throwaway phrases from the writer (not Dr. Shepherd) suggest that:

a) there is a coherent “ME Community”

b) there is a sort of Militant Wing of that community, presumably living in squats in Bohemian backstreets, planning revolution (very slowly, with frequent rest breaks) and organising campaigns of intimidation against anyone they disagree with, and

c) Dr.Shepherd is more or less unique in being able to question the psychological theories without recourse to threats

I don’t see much evidence for any of these implications. 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 ...”

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.

I declare I am a former journalist ... long time ago (!)

 

[SOC]

I declare I am a former journalist ... long time ago (!)

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.