Is tolerance to psychobabble the biggest issue in medicine today?

[alex3619]

If we could show people how they could so easily be misdiagnosed with one of the psychobabble labels that might get their attention. Especially if we could show exactly how their lives could be impacted.

If people saw this as the threat that it is, like cancer, it would make a difference I think. They would then feel the need to protect themselves. They'd have to get involved or at least pay attention.

This was obvious about DSM diagnoses since the 80s for anyone who was watching. Many women were at risk of a psych diagnosis because of efforts to make PMS a psychiatric disorder. The psychologizing of normal, the loss of the notion of normal because almost everything can be considered abnormal from some perspective or other, seems to be where DSM is heading. The campaign to see DSM-V as not fit for purpose is partly in response to this.

Yet I am willing to bet that very few people are aware of this. We are because we can be affected, and we are alert.

It is currently the case that almost anyone with almost any disease can be considered to have a comorbid psychiatric disorder. Yet the protestation is small (though growing I think).

 

[Aileen]

Yet I am willing to bet that very few people are aware of this. We are because we can be affected, and we are alert.

It is currently the case that almost anyone with almost any disease can be considered to have a comorbid psychiatric disorder. Yet the protestation is small (though growing I think).

Exactly. It affects us. It's a no win situation: you have to be aware that there is a problem, in order to pay attention and learn about the problem.

What has to happen is that through a education campaign, people are spoon-fed bits and pieces. You show them a specific situation that could easily affect most people, and then describe what might happen to them.

Eg. Your child has symptom x,y,z. Dr can't find the cause or the med doesn't work. After 4 weeks, there could be an investigation and your child taken from you. Something concrete. If you can point to an example of someone it has happened to, so much the better.

Once you have their attention (now that you've scared the living daylights out of them) you can get into more detail and expand to include other things.

 

[alex3619]

@Aileen, one thing we are lacking are stories. Based on fact or factual, we could really use our creative writers out there. We also need video clips, short movies, etc. Stories, movies etc can often reach people that science and rational debate cannot reach.

Personally I am really hoping we attract some satirical cartoonists. Lampooning the travesty might be very good at reaching yet another group of people.

Most of all we have to make failures public. No cover-ups permitted. Formal complaints about poor medical service. Law suits where appropriate. Letters to editors of journals, magazines and newspapers.

 

[ahmo]

Lampooning the travesty might be very good at reaching yet another group of people.

 

[merylg]

This could be interesting...

http://www.abc.net.au/radionational...medical-symptoms---a-panel-discussion/5712820

http://ultimosciencefestival.com/20...ionals-the-health-report-with-dr-norman-swan/

 

[Alea Ishikawa]

It sounds to me that we are thinking improper psychiatry continues due to the public being largely unaware and unaffected. Our goal is to educate and sensitize the public. Our metric would be public response changing from uninformed/unaffected to educated/passionate. Is this correct?

@Aileen, one thing we are lacking are stories. Based on fact or factual, we could really use our creative writers out there. We also need video clips, short movies, etc. Stories, movies etc can often reach people that science and rational debate cannot reach.

Personally I am really hoping we attract some satirical cartoonists. Lampooning the travesty might be very good at reaching yet another group of people.

Most of all we have to make failures public. No cover-ups permitted. Formal complaints about poor medical service. Law suits where appropriate. Letters to editors of journals, magazines and newspapers.

Alex - It might be a good idea to develop some kind of movement where people commit to helping in 1 action. I recommend 1 because the effects of ME/CFS can be so taxing and variable that a person may only be able to do just 1 action. It's best to have responsibilities (action items) assigned to specific persons on a voluntary basis. If no timely actions are set to a specific person, the agenda can wither away into "someone should do something" instead of "I will do this in 1 week."

It would also be a good idea to track the progress of what has been done, even via aggregate numbers. Something visible to both bring awareness and increase morale.

Also, would a collection/book of stories help? An Equiano type book?

Where would we submit such a thing?

What comes to mind is when I was in college, I knew someone who submitted comics to the university newspaper. I wonder if it would make sense to bring a submission to a webcomic artist... Or have a webcomic artist take up our cause. Perhaps a "day in the life of." Have PWCs submit experience stories that the artist draws off of?
(This reminds me of a particular webcomic that was based on fiction told by a 5-year-old and was brought to life by his adult brother. Four years later, it premiered as a TV series on Fox.)

 

[alex3619]

I am very interested in the webcomic idea. Maybe we can promote it in ME and allied diseases. It has a good chance to go viral if well done I think.

I have been involved off and on in trying to get more people to act even if its only a tiny action. Every bit counts. Its not easy to do. One of the issues is simply that most with ME or CFS or similar are not very active online. Multiple threads have been devoted to asking questions about this.

 

[Art Vandelay]

We need mainstream doctors, scientists and bureaucrats to take a stand. We need evidence favoured over claims, and reason favoured over rhetoric. Mostly however we need to break the culture of acceptance by silence. This whole issue is mired in dogma, it discredits the entire medical profession, and its evidence that we never left the Age of Mythology.

What can advocacy do? What should be our goals? How do we raise awareness of these issues? How do we support the scientists, doctors and especially psychiatrists to speak out?

It's just a thought but enlisting someone like Dr John Ioannidis would be useful to expose the lies in psychiatry, particularly when it comes to ME/CFS. Ioannidis has been making a name for himself by tearing apart bad medical science (see for example "Why Most Published Research Findings Are False" . I'd love to see what he could do with the PACE study.

I'm a bit brain-fogged today and can't write much, so here are some articles about him if you're interested:

http://www.theatlantic.com/magazine/archive/2010/11/lies-damned-lies-and-medical-science/308269/
http://www.macleans.ca/society/life/when-science-isnt-science-based-in-class-with-dr-john-ioannidis/

 

[alex3619]

Ioannidis is one of the authors I think we should be paying attention to. Some time soon we should start making a list.

 

[Keela Too]

Recently the case of Ashya King grabbed media headlines here in UK. There was a massive petition to release his parents.

http://www.bbc.co.uk/news/uk-england-29040124

Not psychiatry at fault this time, but in a nutshell the parents removed their son from hospital in UK - against medical advice - and took him to another country to get a treatment not offered locally. An international hunt for them began resulting in the parent's imprisonment and no access to their son placed in another hospital.

Thankfully good sense (and massive public outcry) has now resulted in the parents being released.

BUT why did the state feel justified in thinking that THEIR opinion was more important than that of the parents? This was NOT a case of abuse, just that the parents felt a different treatment would offer more hope. Scary.

This is the sort of thing we all need to fight... and psychiatric diagnoses could make a situation like this very messy.

 

[Dx Revision Watch]

@Keela Too

In case you are not aware, a commentary on the Ashya King case by Camilla Cavendish was published in the Sunday Times (Sept 7, 2014) which had included references to a family with a child believed to have ME. The fact that TYMES Trust has advised 125 cases has been brought to Ms Cavendish's attention.​

http://www.meassociation.org.uk/201...ck-sunday-times-news-review-7-september-2014/

‘The state may threaten but a parent knows when a child is sick’ | Sunday Times, News Review | 7 September 2014

From The Sunday Times, News Review, 7 September. Words by Camilla Cavendish, Associate Editor.

[7th para from beginning of article]

 

[Keela Too]

Yes thanks, I saw that. It was a good piece.

Also interesting from my N.Ireland perspective:
"Northern Ireland will soon consider first-of-its-kind mental health legislation, which provides safeguards against forced intervention and commitment by assuming persons have the capacity to make decisions, unless proven otherwise… a kind of innocent until proven guilty mental health theory."

http://www.cchrint.org/2014/09/18/northern-ireland-takes-the-lead-in-defending-patients-rights/

Which in theory would mean a Karina Hansen case couldn't happen here. This wouldn't apply to minors however.

 

[Alea Ishikawa]

I am very interested in the webcomic idea. Maybe we can promote it in ME and allied diseases. It has a good chance to go viral if well done I think.

Alex - I was going through an old thread and found this:

One of our talented artists (we must have one here) should take some of these and create a cartoon humor book. *grin* Once the wave breaks and the world knows what a serious illness this is, our artist might make a mint selling a book demonstrating the idiocy of some folks facing chronic illness patients. S/he might even be able to sell some as politcal commentary to media outlets. Any takers?

A "political commentary" cartoon to the media. Brilliant idea.

Even if we could illustrate via MS Paint.

 

[snowathlete]

We need to tell better stories than the pyschobabblers, and find ways of getting those stories heard. Make sure we all do our part to spread them.
Start to change perceptions, remind people to think for themselves and why they need to, warn of the dangers.
Lots of different ways, but the advantage the pyschobabblers have is that they already have organised outlets under which their tales are told.

 

[snowathlete]

I was trying to suggest something in my post earlier but maybe that wasn't very clear. I think the scientists taking the anti-psychogenic position need to network and start a scientific movement, possibly starting with a conference.

Good idea? Bad idea? Just throwing it in there to start a discussion of practical steps.

We can talk about why people stick to the psychogenic model (and there's been acres of that kind of discussion on the forum over the years) but if we want change, we need advocacy action. This thread could be a good place to talk constructively about what to do. I'm glad you started it, Alex.

Good idea in my view. The trick will be to get the right people involved at the foundation. They need to be scientists who not only are recognised as such but who recognise the danger and see it needs to be tackled. Probably plenty who will agree in principle but take things no further.

 

[snowathlete]

@Aileen, one thing we are lacking are stories. Based on fact or factual, we could really use our creative writers out there. We also need video clips, short movies, etc. Stories, movies etc can often reach people that science and rational debate cannot reach.

Personally I am really hoping we attract some satirical cartoonists. Lampooning the travesty might be very good at reaching yet another group of people.

Most of all we have to make failures public. No cover-ups permitted. Formal complaints about poor medical service. Law suits where appropriate. Letters to editors of journals, magazines and newspapers.

I'm working on a fiction novel & screenplay that'll cover a lot of these issues. I plan to write an afterword about the origin of the ideas to raise awareness too, so that people understand the real issues facing society.
Progress is slow but this is how I decided I could have the most impact. One issue I see is that you have to get the attention of 'normal' folk, who don't follow these issues because they're busy going about their normal lives, unaware or aware only on their periphery.

 

[alex3619]

Progress is slow but this is how I decided I could have the most impact. One issue I see is that you have to get the attention of 'normal' folk, who don't follow these issues because they're busy going about their normal lives, unaware or aware only on their periphery.

Exactly. For change to happen it requires a certain number of involved people. That number is not known, except that we know we are below that number. The medical profession has historically been resistant to change if what is needed is too far from current positions. The public is busy, tied up in their own lives, and as things get harder for the average person they often focus more and more on their own issues.

We need scientific engagement, medical engagement, political and bureaucratic engagement, but also mass engagement. We don't have ANY of these. Sure we have a few dedicated doctors. Sure we have a few dedicated advocates. Its not enough.

The irony is that if ME were much more common and much more visible we would be noticed. There are so many problems affecting only a few percent in society that I suspect they blur into a background "things are stuffed but what can you do?" attitude.

To engage the general public we need to be able to reach them. Yet so far all efforts have failed. I think it requires another mystical unknown amount of effort to succeed.

Yet against this we have a rise in counter-stories, attitudes that work against us. Medicine has to be efficient (not effective). Society cannot afford to pay for all this (yet we pay for failure to deal with this, and that cost is growing). We have to take measures to ensure these costs are not out of control (yet we support failed economic measures that ensure we cannot recover).

I regard the PACE trial as a wake-up call. With so many glaring logical and mathematical problems, with an emphasis of rhetoric over substance, and with a pervasive incapacity of the medical profession to realize this, one has to wonder just how entrenched dogma and unreason are in the medical profession. One has to wonder how much of other issues are being poorly dealt with in medicine, including issues with most of psychiatry.

Yet esoteric (to the average person) issues like PACE will have no traction. Its just too far outside of ordinary experience. Apparently its too far outside of doctor's experience too, or we wouldn't see this level of ignorance.

I have been thinking of satire, cartoons, songs, stories and movies as ways to reach people. We need to think outside the box.

There are two separate advocacy issues. The first is rational engagement with problems, including science and politics.

The second is rhetorical engagement with all factions in this story. This is where psychobabble excels. They are good story tellers. We need to be out there getting our stories seen. Its not enough to just tell our story. We have to make it engaging. We have to make it obvious.

We are facing out of sight, out of mind. We have to make it in sight, in mind.

 

[Leopardtail]

@Aileen, one thing we are lacking are stories. Based on fact or factual, we could really use our creative writers out there. We also need video clips, short movies, etc. Stories, movies etc can often reach people that science and rational debate cannot reach.

Personally I am really hoping we attract some satirical cartoonists. Lampooning the travesty might be very good at reaching yet another group of people.

Most of all we have to make failures public. No cover-ups permitted. Formal complaints about poor medical service. Law suits where appropriate. Letters to editors of journals, magazines and newspapers.

Did the british satire 'Spitting Image' ever reach Australia? Something like that would be ideal....

 

[Leopardtail]

I'm working on a fiction novel & screenplay that'll cover a lot of these issues. I plan to write an afterword about the origin of the ideas to raise awareness too, so that people understand the real issues facing society.
Progress is slow but this is how I decided I could have the most impact. One issue I see is that you have to get the attention of 'normal' folk, who don't follow these issues because they're busy going about their normal lives, unaware or aware only on their periphery.

stick a couple of drop dead gorgeous actors in it and they'll watch it.....

 

[Leopardtail]

I think that for most people, a particular cause only peaks their attention if it meets at least one of the following criteria:

1. they, or someone close to them, is diagnosed with it.
2. it is something dramatic and frightening
3. they could get it (e.g. cancer because it is so common, Ebola because highly contagious)
4. a major celebrity has it. (if Justin Beiber got ME, everyone would know what it was within 24hrs!!)

otherwise, they just ignore it. It has to touch them personally somehow.

perhaps we need to get the like of him to do a spoof advert or newspaper article then..... and a follow up explaining why it was done..... a good strong shock tactic to promote awareness.....