Simon Wessely wins prize for "Standing Up For Science."

[Esther12]

Where there are bad people are allowed to thrive, there is a desire for such people to exist. The face of desire is not desire itself. The best place for people like Wessely, Sharpe and White, is across a platform from researchers like Komaroff, Klimas etc, being contradicted, authoritatively and academically in broad daylight.

The evidence around CFS is all so tenuous that who would win any debate would largely depend upon the prejudices of the audience. At this point I'm sceptical of anyone presenting themselves as a CFS expert.

A bit primitive but sort of works so long as you have a unified (fascistic ?) community. But as long as you have other people who may identify with the ‘hated’, or who feel some other bond – familial, collegiate etc, then all you end up with is tribalism. And that’s a really crap place to be if you are on the outside of a tribe whose skills and support you need.

Some 1.4 million people are employed either directly or indirectly by the NHS, the issue of threats of violence and actual violence is a major concern for all of those employees VIOLENCE TOWARDS NHS STAFF . Few of those 1.4 million people, together with their friends and families would not accept Wessely’s report of threats to him at face value. In tribal terms, hating Wessely translates to hating all health workers, personally I think that is a massively dumb position to court, particularly if the only purpose is allowing an M.E/CFS ‘tribe’ to get its collective ‘rocks off’ by rhetorical stringing up of an imputed dictator/abuser/Quisling/traitor/heretic or whatever else permits the summary justice of the tribal mob. Hating is fine, but allowing ‘hate’ to become emblematic of an advocacy position is monumentally stupid, unless of course the object of the advocacy is holy war or the advancement of ethnic cleansing, Helotry or dictatorship – then it works quite well.

I'm sure that you realised this, but as I wasn't very clear I'll be explicit: I was writing on the assumption that a mob mentality was a bad thing.

Also, I recognised that politically, it would probably be more effective to just ignore Wessely. As you say, people tend to be somewhat tribalist, and those with power and authority over us will associate themselves with Wessely far more than with patients. To some, the very notion of patients complaining about how they have been treated will seem absurd, and indistinguishable from being anti-science. People who complain about the police can be seen as anti-law and order.

For myself, I'm just not willing to live life in a way that accounts for the prejudices of those with power and authority, even though failing to do so will be likely to cause me problems. I am only speaking for myself rather than promoting some position for advocacy, but I find that life is more meaningful and enjoyable when I say what I think is true, and engage in open and honest debate with others about it. I think that the approach promoted by Wessely has really harmed how patients are treated: I think that it was always unreasonable, and always immoral. Being open about that is unlikely to help the cause of CFS patients, but trying to pretend otherwise would require some really slippery use of language, which goes against my own desires for my life and my identity (areas where I've already had to make significant sacrifices).

I like to think that I do not just pour out thoughtless and indefensible anger, which would be damaging and mindless; but when I feel that I can defend my views through reasonable and evidence based debate, then I do not like to self-censor for political reasons. (Possibly I'm confusing posting on an internet forum for some sort of valiant struggle for personal freedom, equality and the pursuit of truth. My health is limiting - I need to self aggrandise where I can.)

 

[Kati]

i have tweeted to Mrs Wessely, to the UK prime minister, BBC and NHs telling themthat Wessely has cause much damage to our community including suicides and neglect.

The lack of care for new patients diagnosed this year, even in Canada or other countries are related to Wessely's propaganda.

 

[Bob]

Please be careful, Kati, about exposing yourself to potential libel issues.

 

[Kati]

I have said what needed to be said. wessely came to Vancouver in the 1990's telling our drs that we had false illness beliefs and childhood trauma. This effectively caused Dr Carruthers' clinic to shut down and at least 10 committed suicides.

Someone got to tell them the truth.

It's not like I will repeat it over and over but BS like Wessely spreads all around the world got to get responded .

 

[Bob]

I'm not necessarily objecting to what you are saying, Kati. I'm just asking you to take care.

 

[Kati]

Thank you Bob. Will do

 

[biophile]

Harassment is unacceptable and it is not fair to scapegoat Wessely for everything that has gone wrong.

Some questions ...

What is the best way to condemn and prevent the occurrence of harassment or abuse?

What is the best way to explain why people have taken issue to Wessely's approach or how it has been applied by others?

What is the best way to find out more about what is really happening when there are severe trust issues?

What is the best way to demonstrate that some criticism is justified and not a form of extremism?

What is the best way to defend against the marginalization of objections?

How can the controversy be resolved?

 

[Kati]

Silence = Death

 

[alex3619]

I think the science will be our eventual solution. They can slow, distort or misrepresent it, but it will still happen. Engaging on scientific terms needs to be logical and unemotional.

Engaging on political terms is the opposite. Emotion is almost mandatory. Rationality is less important than engaging interest via rhetoric or emotion. These are the primary methods used by the other side, the "science" does not accord to what I consider minimum scientific standards, a point which is becoming increasingly discussed in mainstream psychology.

Ad hominem attacks are still not a great idea though, a point on which I agree with In Vitro Infedelium. Its not the people who are our enemies, its the system. Sure, the people enact the system, but remove one and you get another to replace them, like interchangeable parts. Going after individuals is not effective. Going after the institutions and support systems that permit all this to happen, including various layers of government and kwasi-government institutions, businesses and regulatory bodies and authorities, is much more legitimate.

Its not that the people no longer have the power to make the change. Its that they have been convinced they no longer have the power and shouldn't bother trying. In a democracy we (the public) always have the power. For example, we can create a new party with a platform and mandate for major change. If enough people decide enough is enough, and they eventually sweep into power, then for few years change will happen until the new system becomes compromised. Nothing happens only because we have been convinced nothing can happen plus lack of numbers.

Similarly we (in ME advocacy) have been convinced to be quiet. Calling for everyone in advocacy to engage only in rational unemotive strategy is a huge mistake in my view. It is entirely appropriate for scientific advocacy, its exactly the wrong thing for political advocacy.

Rational argument, with facts and sound logic to back it, is only received in a political arena by those who have a similar world view, are previously engaged, and are prepared to be swayed by logic. Most in the political arena do not fit these criteria. Hence other strategies and arguments are needed.

I am trying to operate, alternately, from a political view and from a scientific view. Its very hard to do both simultaneously as the nature of the intended audience is vastly different.

We need out of the box thinkers. We need emotive arguments. We need slogans. We need more patient video testimonies on the net. We need lots of things. Most importantly we need people to engage and try to make a difference, however limited that difference may be. Small changes, small impact, multiplied by a lot of people over a lot of time may not be small at all.

Bye, Alex

 

[alex3619]

Silence = Death

In our case, Silence=Undeath?

 

[Kati]

I truly believe we as a patient group need to make noise. And in fact Ian Lipkin made allusion to that as well. Agree that the right message needs to be conveyed, but a slightly off message is better than no message at all.

Writing to your government, engaging in chats which are related to health, health care related (Twitter has a lot ofthose, look up Health Care Tweet Chats), looking for exposure in papers, local, refional and national. Local news are good ways to engage in my opinion.

i think it's totally healthy and appropriate to be angry. we have been royally cheated from a decent living.

 

[Enid]

Picking up Kati's point about SW (psychiatry generally but he the most influence) on ME being a false belief, and his propaganda overseas, I've heard repeated again and again from other countries in the EU. The damage done is incalculable. It still obviously floods medical textbooks as a genuine diagnosis - ten years ago I met 4 junior docs saying "all in your mind".(as our new idea they said so someone has been working hard to keep it there and apply to cover their ignorance).

 

[In Vitro Infidelium]

I'm sure that you realised this, but as I wasn't very clear I'll be explicit: I was writing on the assumption that a mob mentality was a bad thing.

Also, I recognised that politically, it would probably be more effective to just ignore Wessely. As you say, people tend to be somewhat tribalist, and those with power and authority over us will associate themselves with Wessely far more than with patients. To some, the very notion of patients complaining about how they have been treated will seem absurd, and indistinguishable from being anti-science. People who complain about the police can be seen as anti-law and order.

For myself, I'm just not willing to live life in a way that accounts for the prejudices of those with power and authority, even though failing to do so will be likely to cause me problems. I am only speaking for myself rather than promoting some position for advocacy, but I find that life is more meaningful and enjoyable when I say what I think is true, and engage in open and honest debate with others about it. I think that the approach promoted by Wessely has really harmed how patients are treated: I think that it was always unreasonable, and always immoral. Being open about that is unlikely to help the cause of CFS patients, but trying to pretend otherwise would require some really slippery use of language, which goes against my own desires for my life and my identity (areas where I've already had to make significant sacrifices).

I like to think that I do not just pour out thoughtless and indefensible anger, which would be damaging and mindless; but when I feel that I can defend my views through reasonable and evidence based debate, then I do not like to self-censor for political reasons.

That's what I thought you meant but given the context, ambiguity isn't exactly welcome.

(Possibly I'm confusing posting on an internet forum for some sort of valiant struggle for personal freedom, equality and the pursuit of truth. My health is limiting - I need to self aggrandise where I can.)

And that likely goes for us all ! The irony is that injudicious 'freedom' postings in other contexts mean that any discourse carried on about M.E/CFS in any public forum is liable to be assessed in terms of the extremes voiced elsewhere. Which is pretty much where the award given to Wessely has brought us.

IVI

 

[In Vitro Infidelium]

i have tweeted to Mrs Wessely, to the UK prime minister, BBC and NHs telling themthat Wessely has cause much damage to our community including suicides and neglect.

The lack of care for new patients diagnosed this year, even in Canada or other countries are related to Wessely's propaganda.

What is your strategy in doing this ? How do think your 'tweets' are going to be recieved by the recipients ? I'm afraid you are just confiming the prejudices of those who see M.E/CFS patient's behaviour as 'pathological', adding to Wessely's list of 'misguided/minformed/harassment' and, for whover acts as the human spam interceptors at the BBC and Downing Street, a tick against M.E/CFS as a spam/nutter keyword.

IVI

 

[In Vitro Infidelium]

Engaging on political terms is the opposite. Emotion is almost mandatory. Rationality is less important than engaging interest via rhetoric or emotion. These are the primary methods used by the other side, the "science" does not accord to what I consider minimum scientific standards, a point which is becoming increasingly discussed in mainstream psychology. ......................................

.......................Rational argument, with facts and sound logic to back it, is only received in a political arena by those who have a similar world view, are previously engaged, and are prepared to be swayed by logic. Most in the political arena do not fit these criteria. Hence other strategies and arguments are needed.

This is too reductive an analysis. Casting all politicians as a single audience is in itself flawed reasoning - for example there are huge differences between the political cultures of differing countries, such that one size most definitely does not fit all. In the UK, if one were to be addressing an MP, seperately from any Government role that person may have, any written contact would be processed via support staff, which where the issue involved health, would for 70% of MPs, mean appraisal by an academic or political researcher. If the issue was presented as anything other than a request for support over a personal or local community problem *, then the MP would see the contact document plus the researcher's brief with either a recommendation to follow up in detail - or just reply with a 'thank you for drawing this issue to my attention' !

Contact with a UK Minister is processed via civil servants and the Minister may never actually see the contact documents. The most effective way to get a Minister to even put the issue on their radar is to have a local MP write on a constituent's behalf - and in that case we are back to MP's researchers. None of this is amenable to emotional presentation - what may attract interest at a political level though is the fact of emotionalism inherent in an issue that might in turn engage media interest - puppies, children, frail elderly, vicious criminals etc.

Making effective use of such symbols of patheticism (puppies etc) though is a double edged sword - such symbols stick and become emblematic, putting constraints on future representations of the advocated position. This is already a notional problem for M.E/CFS - how can a patient group beset by an illness which impairs so much functioning - be seen to energetically campaign ? Emotionalism doesn't allow for sophisticated imagery - things are either monochrome and pathetic with human subjects presente as victims - or things are vibrant and energetic. Some health campaigns square this by having the monochrome victims 'visited' by 'sunny' care/cure givers - not currently an option for M.E/CFS.

*(the process in those cases would likely proceed to a face to face 'surgery' meeting', at least for those MPs who are not 'above that sort of thing', probably only 20% of the current incumbents are chronically unavailable to their constituents)

IVI

 

[Stukindawski]

how can a patient group beset by an illness which impairs so much functioning - be seen to energetically campaign ?

The energy must always be juxtaposed with the suffering it engenders. The point must always be made that because so little research is being done on ME/CFS, we have no choice but to abandon concern for our immediate health and suffer the fallout of our actions. These types of things have to be repeated ad nauseam to catch on I'm sure.

 

[notinfinite]

Playing by the rules is not something many of us have the time or strength to do.

Communicating with MP's, whilst being the advertised method of getting something done, is futile - we would not be here if chatting with our representatives would improve our collective position. I shudder to think how many patients, families etc have trodden this well worn path only to be left shaking their heads in disbelief that we are left to rot.

In my humble opinion, engaging with Government is like trying to convince a weed in a garden to stop growing. Shouting at the weed makes no difference (unless you are Prince Charles), it is also pointless to keep on reasoning with a weed, no matter how many times you go to the weed, sit down and discuss the problem it is causing, the weed will not suddenly decide to leave your garden or wither and fade away.

Are you suggesting we say nothing .......... to any one? Do we just stay quiet and die? I cannot disappear in silence just because I may upset some individual that I believe stands in the way of me resuming my very existence. IVI, whilst I respect your patience and admire your balanced reasoning, I do not share your conclusions. Actually, I am not aware what it is you suggest to be the route we should take.

 

[SilverbladeTE]

what's the use...

The poor sods for asbestos and nuclear test veterans were nearly ALL DEAD before they got any compensation/apologies! Do you realize that 2/3rds of the asbestos compensation reward went ot the freakin' LAWYERS?!

 

[In Vitro Infidelium]

The energy must always be juxtaposed with the suffering it engenders. The point must always be made that because so little research is being done on ME/CFS, we have no choice but to abandon concern for our immediate health and suffer the fallout of our actions. These types of things have to be repeated ad nauseam to catch on I'm sure.

I entirely agree - but the explanation of "the energy must always be juxtaposed with the suffering it engenders" to a neutral or unsympathetic audience, requires a reasoned approach, not one delivered emotively. Expressed emotion necessarily denotes energy, forceful motivated expression of 'injustice', suffering etc - followed by forceful motivated expression of: "All this campaigning is making me even more ill" is too much of a mixed message to be accepted by all but the most sympathetic audiences.

IVI

 

[jace]

For the Blood Ban Demo in London, last year was it, I took a sleeping bag with me to lay down on, and it not only allowed me to survive the day, but it made a good visual point. Emotive, but also energy-saving. So I disagree with your point, IVI.