Crawley: How to deal with anti-science BRS2017

[Yogi]

Even people with kidney disease are not safe in the UK.

First they came for people with ME and now those with every other disability (including kidney disease)

http://www.bbc.co.uk/news/uk-39745403

 

[TiredSam]

Even people with kidney disease are not safe in the UK.

First they came for people with ME and now those with every other disability (including kidney disease)

http://www.bbc.co.uk/news/uk-39745403

Good article. Victoria Derbyshire sticking up for the disabled again, good for her.

 

[Maggie21]

Even people with kidney disease are not safe in the UK.

First they came for people with ME and now those with every other disability (including kidney disease)

http://www.bbc.co.uk/news/uk-39745403

Disgusting case, the current welfare system is totally broken and is based on the basic principle that illness doesn't exist, just the unwillingness to work. The biopsychosocial model pedalled by the likes of Wessley has such a lot of cruelty to answer for. Whatever happened to humanity.

 

[Snow Leopard]

There's ongoing CBT interest in managing kidney disease patients. We aren't the only area of physical health they want.

There is a huge difference between CBT being promoted as an adjunct for a minority of patients having difficulty managing the illness, for which there are pharmacological or surgical treatments/aids, versus being promoted as a primary cure-all for medically unexplained symptoms (despite never bothering to collect any objective evidence of reduced disability).

 

[Barry53]

There is a huge difference between CBT being promoted as an adjunct for a minority of patients having difficulty managing the illness, for which there are pharmacological or surgical treatments/aids, versus being promoted as a primary cure-all for medically unexplained symptoms (despite never bothering to collect any objective evidence of reduced disability).

Exactly. Primary versus secondary is the key discriminator.

 

[Cinders66]

There is a huge difference between CBT being promoted as an adjunct for a minority of patients having difficulty managing the illness, for which there are pharmacological or surgical treatments/aids, versus being promoted as a primary cure-all for medically unexplained symptoms (despite never bothering to collect any objective evidence of reduced disability).

I don't think in kidney disease it's as harmless as that. I'm sure I saw that they are applying CBT to the fatigue that is part of kidney disease and approaching it from a psycho social perspective. Obviously kidney disease itself is going to get biological research too but the CBT lot think they can deal with all not fully understood fatigue I think, across diseases

 

[Cinders66]

Kings Rona Moss Morris is busy in the area. She acknowledges the biological but is still on about challenging beliefs about fatigue, and exercise /CBT are promoted

http://www.nierenlebendspende.com/f..._Artom_Fatique_in_advanced_kidney_disease.pdf

 

[Chrisb]

Do we have any idea of what kidney patients make of this? It would seem inappropriate to jump in and alert them if they are perfectly happy with the situation. I wonder whether it would be right to open a thread which might capture the attention on google and invite comment. It looks like we are merely a small part of a grand plan.

It is my theory that all medical conditions are unexplained at the level beyond that at which they are explained. Everything is just one big unexplained symptom.

 

[slysaint]

What also needs clarifying across the board is what 'they' are calling CBT.
Is it the same as the version used for CFS patients, or is it counselling or is it self-help strategies or what?
As one of the authors of the CCC put it "
... We urge such doctors to use the term “SelfHelp Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy”.

 

[Cinders66]

What also needs clarifying across the board is what 'they' are calling CBT.
Is it the same as the version used for CFS patients, or is it counselling or is it self-help strategies or what?
As one of the authors of the CCC put it "
... We urge such doctors to use the term “SelfHelp Strategies” and avoid using the terms “Cognitive Behaviour Therapy” and “Cognitive Retraining Therapy”.

If you look at the PDF you can see some cross over, such as challenging beliefs about fatigue, stopping catastrophisation, modifying behaviour and encouraging exercise etc. Unfortunately CFS is part of the other illness evidence base they quote.
I think there's a difference in how kidney , cancer and MS fatigue is treated to CFS/ME fatigue though, mainly due to the stronger clearer biomedical research base so they have to acknowledge the biological factors whist still finding a room for themselves in the cracks in knowledge, especially around fatigue, to promote their normal BPS stuff. .
If I was with serious kidney disease I think I'd see this as pretty irrelevant and peripheral stuff.

Basically to summarise the BPS lot think CBT and exercise are useful in many conditions and would like lots of money to research and implement that. It's not as devastating in Impact as it is with MUS where they act like they can already explain and treat it.

 

[Ambrosia_angel]

From what I'm aware, CBT is used very differently with illnesses such as kidney disease. They are trying to cure ME patients with CBT whereas with kidney disease they use it to help a patient manage their symptoms and adjust to their new life. Therefore easing the affects of the condition on their mental health. I don't actually think CBT used in that way is bad. Many patients with chronic illness would actually benefit from that sort of support including ME patients.

so yes it's best to separate the two Imo

 

[Barry53]

Accordingly, the management of fatigue is an important clinical priority for enhancing the patients’ QoL.

[my bold]

The paper is about management of fatigue, not purporting to allegedly cure it. Major distinction.

 

[Daisymay]

Exactly. Primary versus secondary is the key discriminator.

I've read somewhere of the term supportive CBT being used for the form of CBT which is used as an adjunct to help people cope with living with a chronic disease. Whereas the form of CBT used with ME, to change people's wrong illness beliefs is termed directive CBT.

 

[Valentijn]

I would not assume that the CBT being proposed for patients with established biomedical diseases is the nice supportive kind. The abusive CBT quacks occasionally publish papers about fatigue or certain other symptoms being a psychosomatic manifestation in these diseases. So those patients are allowed certain "real" symptoms, but an excess of symptoms or their intensity is still psychologized, especially if they persist after any treatment of the biomedical disease (eg, cancer).

How do we tell if the CBT targeting biomedical patients is supportive CBT or abusive CBT? We look at who's involved with it. The two forms of CBT are completely different, despite abusive CBT having hijacked the name of the supportive CBT. The proponents of abusive CBT do not have the training, experience, or desire to use or research supportive CBT. Hence if the usual quacks are involved in CBT for biomedical diseases, it is in the context of abusive CBT, not supportive CBT.

 

[arewenearlythereyet]

Disgusting case, the current welfare system is totally broken and is based on the basic principle that illness doesn't exist, just the unwillingness to work. The biopsychosocial model pedalled by the likes of Wessley has such a lot of cruelty to answer for. Whatever happened to humanity.

I think this also shows a change of government policy that picks up,the worst sort of tactics from the world of commercial insurance...I.e. Reject all claims on small pretexts on the first submission. "Only pay out when they fight for it" type policies may be fine for car insurance, but this is wholly inappropriate for medical conditions since many disabled people are too sick to carry on fighting, or if they do they end up making their condition worse.

This shows the type of people that are managing policy in the dwp.....ones that are lacking in compassion and are detaching themselves from making a humane decision. I hope they don't have to be chronically ill one day for the penny to drop that what they've done has had a catastrophic effect on people's lives.

It's these people that are more scary for me ....even more scary than the BPS brigade, who lets face it would not make too much headway if they didn't have the more calculating and inhumane ministers to lap up their toxic ideas on how to " care for patients".

 

[Sean]

The proponents of abusive CBT do not have the training, experience,... ...to use or research supportive CBT.

Even worse, some of them do, but choose not to.

 

[Daisymay]

I would not assume that the CBT being proposed for patients with established biomedical diseases is the nice supportive kind. The abusive CBT quacks occasionally publish papers about fatigue or certain other symptoms being a psychosomatic manifestation in these diseases. So those patients are allowed certain "real" symptoms, but an excess of symptoms or their intensity is still psychologized, especially if they persist after any treatment of the biomedical disease (eg, cancer).

How do we tell if the CBT targeting biomedical patients is supportive CBT or abusive CBT? We look at who's involved with it. The two forms of CBT are completely different, despite abusive CBT having hijacked the name of the supportive CBT. The proponents of abusive CBT do not have the training, experience, or desire to use or research supportive CBT. Hence if the usual quacks are involved in CBT for biomedical diseases, it is in the context of abusive CBT, not supportive CBT.

I think you're absolutely right. And abusive CBT describes it very well!

 

[TiredSam]

supportive CBT or abusive CBT?

This is another example of many where the BPS brigade take an established term and completely redefine / hijack it for their own purposes.

It's these people that are more scary for me ....even more scary than the BPS brigade, who lets face it would not make too much headway if they didn't have the more calculating and inhumane ministers to lap up their toxic ideas on how to " care for patients".

I think "take care of patients" might be a little more accurate.

 

[Maggie21]

I think this also shows a change of government policy that picks up,the worst sort of tactics from the world of commercial insurance...I.e. Reject all claims on small pretexts on the first submission. "Only pay out when they fight for it" type policies may be fine for car insurance, but this is wholly inappropriate for medical conditions since many disabled people are too sick to carry on fighting, or if they do they end up making their condition worse.

This shows the type of people that are managing policy in the dwp.....ones that are lacking in compassion and are detaching themselves from making a humane decision. I hope they don't have to be chronically ill one day for the penny to drop that what they've done has had a catastrophic effect on people's lives.

It's these people that are more scary for me ....even more scary than the BPS brigade, who lets face it would not make too much headway if they didn't have the more calculating and inhumane ministers to lap up their toxic ideas on how to " care for patients".

I'm afraid I hold the BPS brigade, the politicians and the medical insurance companies equally responsible for this particular injustice. If it wasn't for the BPS brigade pushing this ethos with 'so-called' scientific evidence then the politicians and the insurers would not have this particular loophole to add to their list of excuses to get out of paying.

It's all of them working together in this inhumane venture that manages to persuade the public that it's a valid ethos, ably assisted of course by the SMC (science media centre), which as I'm sure you know is controlled by the BPS brigade. Basically it's the concept of the deserving and undeserving poor that politicians push. But it's the definition of who is undeserving that is driven by the BPS model. And sadly it's been going on since the late 80s early 90s so is now deeply embedded in the mindset of far too many people.

 

[Sean]

Well said, @Maggie21.

It is a very nasty mutual circle-jerk and protection racket.

The politicians and insurance companies get the excuses they need to cover their arses, and in return the BPS cult/scam get power and funding and glory, and not inconsiderable incomes to help further distract from the screaming silence where their conscience should be.