Why few dare tackle the psychology of ME

[SilverbladeTE]

Mark

• people never forgive liars or those who make fools of them (which is part of the psychs' PR techniques against us).
• people love hypocrisy, scandal and "cover ups" being exposed.
• our system is expressely designed to prevent change, to deny the truth, and to let folk suffer and die rather than upset the massive, stupid state system, or rather, upset the "gravy train". Remember "Yes Minister" ? more than a grain of truth in that

exposing this as a criminal conspiracy to abuse and kill off the disabled, and especially the way the Public have been lied to and laughed at by the smug gits (ie, very slanted newspaper articles), would be FAR more effective than Science

Science is "boring", complex and out of most folks' true interests, we need lots of VERY ANGRY VOTERS, pissed off and wanting someone's balls nailed to the proverbial wall, for anything to get done.
Only when the politicians' "cage" gets rattled, does anything get done.

(Note I said proverbial !! this is a common figure of speech)

 

[currer]

The cause of many diseases remain unknown. That does not prevent the development of treatments.
In fact much can be learnt about the underlying pathogenesis of a disease from seeing what treatments it responds to.
This is why it is so important to the psychiatric lobby to block initiatives that want to research treatments.
If it were shown that two thirds of patients respond to rituximab then this element look like they have a disease involving the immune system and B-cells. It does not suggest thay have a primary psychiatric disorder.

It has been known for many years that there is good evidence of immune dysfunction in ME.
I am aware of one drug that acts on the immune system that was put forward for an RCT, but the funding was not available to complete the study.

The problem is lack of research funding and medical interest- not a lack of possible options to explore.

This is why the publicity campaign against PWME is kept in the public eye - I believe it is to dissuade doctors from wanting to research in this area, and to predjudice them against a patient group.

 

[Bob]

The problem is lack of research funding and medical interest- not a lack of possible options to explore.

This is why the publicity campaign against PWME is kept in the public eye - I believe it is to dissuade doctors from wanting to research in this area, and to predjudice them against a patient group.

Interesting perspective, currer. Personally, I think you've nailed it there. I've been trying to work out what the tactics were aimed at achieving, and I couldn't work it out.

Particularly when the likes of Wessely and White make the claim that patients are being naive and old-fashioned about 'mind-body dualism', it seems to me that it completely undermines that position when you point out that the people who are saying this are fully aware that a clear financial distinction is made between 'mind' and 'body' classification - and that they are fully aware of this because they are being paid by the very people who would have to pay out if ME were put in the 'body' side.

The thing is, this point about insurance is an incontrovertible fact. It's utterly disingenous and misleading for Wessely to make this argument that the distinction between mind and body is old-fashioned, and he is then completely exposed when you point out that he knows perfectly well that the distinction is made by organisations that he and his colleagues all carry out work for, and that this distinction means they don't have to pay out purely because it is classified in this way. For me, that is an absolute killer argument: there is simply no disputing it. It exposes the psychiatric lobby arguments about mind/body dualism as pure hypocrisy.

Great points, Mark.

 

[Sean]

It seems strange to me that doctors are like that - comming from a scientific background I would expect everything to be challenged.

Doctors generally don't make good scientists. They are trained in quite different, and sometimes incompatible modes of thought.

Not in any way diminishing the value of good clinical doctors, they are worth their weight in gold. It is just a case of different horses for different courses. You don't take a racehorse on a 10 day trail ride.

 

[currer]

I'd like to redirect everyones attention to a point that was made just before this conversation got derailed.

My impression over the years has been that the publicity campaign against PWME is kept up against us to stop medical professionals from taking an intelligent interest in researching this disease by persuading them it is dangerous to get involved in ME because the patients are undeserving of help and are deranged enough to assault them - physically or verbally.

I think this is its only purpose.

I found some good quotes from this blog - thanks, Samuel.
http://thekafkapandemic.blogspot.co.uk/2012/09/politics-and-rage.html
Politics is the manipulation of how things work in society, for the sake of private gain, by the powerful, at the expense of the weak, often using the feelings of the masses as a tool.

Things that are not a matter for debate are being debated and lost. The basic worth of humans, the basic value of truth, the basic facts of natural reality. All at the cost of health, lives, and everything that has ever mattered.

 

[currer]

It interests me to see that whenever there is a danger of fresh research interest awakening in ME that a noisy publicity campaign follows in the papers - not in medical journals, where a modicum of decency is necessary - to misrepresent the research and deflect interest back into "safe" psychiatric areas.

The problem has always been that not enough young researchers are developing an interest in ME
Medics need to see that there are good career opportunities for them in this field that will be rewarding.
It is not yet certain which medical specialty PWME belong to. Should we be referred to immunologists or infectious diseases specialists?

If no specialty other than psychiatry sees us as potential patients the biomedical research so necessary to move understanding forward can not occur.

I believe this is the reason for the publicity assaults on PWME.
It is to put new doctors off from developing an interest in our disease and to ensure that basic research that can change the politics around ME does not occur.

 

[natasa778]

The other thing is that the experience confirmed my original theory about the fears and prejudice surrounding mental illness. Those who denounced my column told me (often in capital letters) that they weren’t making up their symptoms, that they were physical, so how could it be psychological? And therein lies the rub: that mental illness is seen as being ''made up’’ or somehow inferior to physical illness.

These ME sufferers pointed out that brain scans have shown possible neurological changes as evidence that their illness wasn’t psychological, completely failing to understand that such scans show significant changes in every psychiatric disease, too. This is the root of the problem – that we, as a society, still labour under the Cartesian legacy of the mind-body split, and that only physical illness is real. Meanwhile, because of a vocal, vexatious minority, the suffering of those with ME will continue to go largely unreported.

So might MS by psychological then? Lets try imagine this article written on MS instead - just swap the words ME above with MS, what do you get? Would this person be expected to still keep his job as a 'journalist'.

Ooooh, and how about turning the problem on its head - it has never occurred to this guy that so called psychiatric disease might, just might, be downstream of physical pathologies, ie be caused by biological mechanisms? He obviously very carefully choses what he reads, in case it interferes with his stone age ideas.

AIDS patients often suffer brain fog and psychiatric problems, so is NeuroAIDS a mental health problem then, nothing to do with immune-HIV-related pathology? What a dork, unbelievable.

 

[alex3619]

One point on brain scans and psychiatric disease, which of them have lesions in the brain stem and dorsal root ganglia? Surely the argument could be easily the opposite, that if psychiatric disorders have such signs then they are neurological disorders, and most of psychiatry disappears in a puff of smoke, as natasa778 has said.

My prediction has been for some time that most of psychiatry will disappear, it will be mostly replaced by counselling and neurology. Psychosomatic disease will go back to its roots, looking at mental interaction in physical disease. Functional somatic medicine will disappear in an even brighter puff of light and smoke than the rest of psychiatry. They keep inventing illnesses, inventing diagnoses, and failing to cure many people. They could do so much better but they wont let go of the old way of doing things.

Psychiatry needs a radical paradigm shift or its doomed long term. The question is how long will it take for this to happen, or how long will it be before psychiatry makes major changes to its methodology and models? Is it even worth saving if neurology and counselling can do as good or better once the science advances?

Bye, Alex

 

[currer]

One point on brain scans and psychiatric disease, which of them have lesions in the brain stem and dorsal root ganglia? Surely the argument could be easily the opposite, that if psychiatric disorders have such signs then they are neurological disorders, and most of psychiatry disappears in a puff of smoke, as natasa778 has said.

My prediction has been for some time that most of psychiatry will disappear, it will be mostly replaced by counselling and neurology. Psychosomatic disease will go back to its roots, looking at mental interaction in physical disease. Functional somatic medicine will disappear in an even brighter puff of light and smoke than the rest of psychiatry. They keep inventing illnesses, inventing diagnoses, and failing to cure many people. They could do so much better but they wont let go of the old way of doing things.

Psychiatry needs a radical paradigm shift or its doomed long term. The question is how long will it take for this to happen, or how long will it be before psychiatry makes major changes to its methodology and models? Is it even worth saving if neurology and counselling can do as good or better once the science advances?

Bye, Alex

Good post Alex, but unfortunately I reckon psychiatry has a long life ahead of it because of its usefulness in burying inconvenient truths.

I still think that independent scrutiny of the discipline of psychiatry is necessary, quite separate from other medical specialties, because of its propensity for human rights abuse.

 

[alex3619]

Yes currer, psychiatry's lifespan is in question, it could hang around beyond all our lifetimes, but it looks like it does have an end. Bye, Alex

 

[allyann]

Alex,

I found CBT beneficial when I was suffering from depression several years ago. It has however been utterly useless in helping with my ME/CFS symptoms. That says something doesn't it!

Allie

 

[Bob]

There's a single letter about Pemberton in the Telegraph today, which could be considered helpful or unhelpful.

Pemberton sees it as supporting his case, which is obviously why they cynically included this ("heavily edited") single letter on the subject.
The writer intended to rebut Pemberton's case, but Pemberton obviously sees it as proving his point.
I know this from a Twitter interaction, which can be read here:
https://twitter.com/indigojo_uk/status/251217630143332352

The letter in the Telegraph is some way down the webpage, under the sub-heading:
ME and mental health
http://www.telegraph.co.uk/comment/...a-political-rather-than-practical-policy.html

 

[Bob]

Sonia Poulton has said that she is working on some further articles about ME. I think she's looking into the medical mistreatment of children with ME and their families.

 

[pollycbr125]

Sonia Poulton has said that she is working on some further articles about ME. I think she's looking into the medical mistreatment of children with ME and their families.

Yes she is I really appreciate what she is trying to do for us here in the UK however I think she may have already ruffled a few feathers so I would urge folks in the UK to get behind her 100% . She really does get it she knows how sick we are and how much we have been mistreated . I take my hat of to her Sonia has more balls than most blokes I know

 

[Undisclosed]

Please Note -- the discussion about Positive Thinking has been moved to http://forums.phoenixrising.me/index.php?threads/positive-thinking-and-illness.19592/

 

[user9876]

The cause of many diseases remain unknown. That does not prevent the development of treatments.
In fact much can be learnt about the underlying pathogenesis of a disease from seeing what treatments it responds to.
This is why it is so important to the psychiatric lobby to block initiatives that want to research treatments.
If it were shown that two thirds of patients respond to rituximab then this element look like they have a disease involving the immune system and B-cells. It does not suggest thay have a primary psychiatric disorder.

It has been known for many years that there is good evidence of immune dysfunction in ME.
I am aware of one drug that acts on the immune system that was put forward for an RCT, but the funding was not available to complete the study.

The problem is lack of research funding and medical interest- not a lack of possible options to explore.

This is why the publicity campaign against PWME is kept in the public eye - I believe it is to dissuade doctors from wanting to research in this area, and to predjudice them against a patient group.

I wonder how many psychiatric disorders would respond to different drug aimed at the immune system. I believe there is going to be a trial looking at antibiotics and scitsophrinia 5 years after positive effects were noted in japan. I've seen one article suggesting that eating disorders are associated with imflamation in the brain.There is also evidence of immune system variation in Bipolar disorder.

I think Alex is right when he says psychiatry will be dead in a few years. Perhaps this is behind their read guard action, don't forget that Peter White wrote an article a while ago saying neurology and psychiatry should be combined.

What would be left for them to treat?

 

[Esther12]

There's a single letter about Pemberton in the Telegraph today, which could be considered helpful or unhelpful.

Pemberton sees it as supporting his case, which is obviously why they cynically included this ("heavily edited") single letter on the subject.
The writer intended to rebut Pemberton's case, but Pemberton obviously sees it as proving his point.
I know this from a Twitter interaction, which can be read here:
https://twitter.com/indigojo_uk/status/251217630143332352

The letter in the Telegraph is some way down the webpage, under the sub-heading:
ME and mental health
http://www.telegraph.co.uk/comment/...a-political-rather-than-practical-policy.html

It's really as if Pemberton doesn't realise that it's the false and misleading claims made about the efficacy of treatments, which he parroted and then blamed patients for rejecting, are such a key part of patients feeling mistreated and dismissed. He's such a lazy stupid hack.

 

[In Vitro Infidelium]

It's really as if Pemberton doesn't realise that it's the false and misleading claims made about the efficacy of treatments, which he parroted and then blamed patients for rejecting, which are such a key part of patients feeling mistreated and dismissed. He's such a lazy stupid hack.

Is it really laziness and stupidity ? My interepretation is that he's employing concious and deliberate confirmation of bias such that the 'class' of individual he is focussed upon (in this case people with M.E) remain 'confirmed' as 'unstable', 'dangerous', 'ignorant', 'venal' etc in the eyes of his target audience. Scientific accuracy, or even journalistic 'truth' are not IMO the defining elements of Pemberton's writing, but rather it is the identification of locci of 'deserving blame', whose moral bankruptcy (or madness) explain the failings of (cough) 'modern Britain' which Pemberton is seeking to achieve.

IVI

 

[SilverbladeTE]

yeah if these bastards said such about any "race creed or colour" they'd get jailed!
but, because it's the "hypochondriac ME community who're all mad, lazy and wasting YOUR welfare money!!"...they can get away with it

We are one current pinata, but this cartoon explains it oh so well, for another vicitm group
(and, exact same nasty evil crap versus immigrants has been going in in UK for many years)

 

[Esther12]

I think you're right IVI, it's just that I think I'd class that as a form of stupidity (I didn't mean <80 IQ or anything). He seems to have real faith in himself and the view of the world he's presenting, despite seeming not to have done any real research, or being able to defend his views. Him responding to criticisms of his claims about PACE by pointing out that they did not lead to him being sanctioned by the PCC... I guess we've all got different standards for ourselves.