Cognitive Therapy

[max]

Does jumping up and down like that help anyone but yourself? Its hardly going to endear ME patients to any of those journalists or TV documentary makers who we need on our side to help create a balanced view. Do you think ranting or big red letters will help our cause for better treatment? Nobody from the outside world will differentiate between moderate patients and irate carers. We're all the same to them. News makers will rub there hands together with glee and say 'Great story! This guy is against therapy yet look at the way he behaves!' In behaving the way you do, you are an inadvertent but very potent ally of Wessely. Well done Max. Just what we need.

Astrocyte

havn't you heard ........... I AM an ACTIVIST ........ I have no time for TV, for Journalists - these people have had ample opportunity to be on our 'side' - you're damn right I am irate, however, you are so very wrong accusing me of being an "ally of Wessely" - but then again, I think you know that.

 

[Wildcat]

Oh Groan.


Its such an old chestnut - telling outspoken but informed patient/carer/activists to be 'good' and to stop being 'naughty' or they will be aiding Wessely and will confirm the (pretty dirty) portrayals of us by those very psychiatrists/medics whose entire careers have been based on misrepresenting our disease, and who you are so diligently (but, in my view, rather naively) promoting as 'nice', Astrocyte.

 

[Esther12]

Personally I would prefer a wise and reasoned approach from helpful supporters ie people who would elicit a measure of respect from the majority of patients, not just from a rather insular world of forum members. On that basis we can move forward with dialogue with those who can effect change. Obviously that requires a measure of restraint. But it is possible and has been demonstrated by some sufferers on this thread, who are never the less very angry. The moment unreasonableness enters the frame we are lost and so is any cause we might fight for.

We've just had Esther Crawley claiming that PACE shows that 30-40% of CFS patients recover following CBT/GET, and that funding should be directed towards them because of that. Those with authority over us are not behaving in a restrained or reasonable manner - they've screwing us over and pretending that our anger at that is evidence of how disturbed we are.

I've had my disagreements with plenty of people here, including Max, but I don't for an instant think that the problems we face are caused by unreasonable CFS advocates. Everyone could always behave in a more optimal manner - but the primary problems stem from those who are unreasonable and in positions of power and authority - like White. When such a large group of patients are mistreated, there will always be a wide range of reactions to this - that does not justify the mistreatment, or mean that patients are to blame for it. It is not reasonable to expect all CFS patients and advocates to always be reasonable.

 

[Wildcat]

Very Well put, Esther12!

Thank you for making a lucid summing up of the tricky tactics of what could be described as an engrained policy of blaming the patients/carers/activists, ie blaming the largely disempowered victims of a very poweful coterie who have controlled the policy and research for over two decades.

 

[max]

Thanks Esther

 

[justinreilly]

Does jumping up and down like that help anyone but yourself? Its hardly going to endear ME patients to any of those journalists or TV documentary makers who we need on our side to help create a balanced view. Do you think ranting or big red letters will help our cause for better treatment? Nobody from the outside world will differentiate between moderate patients and irate carers. We're all the same to them. News makers will rub there hands together with glee and say 'Great story! This guy is against therapy yet look at the way he behaves!' In behaving the way you do, you are an inadvertent but very potent ally of Wessely. Well done Max. Just what we need.

I disagree 110%. Have you watched the news? They gobble stuff up where there is a big controversy; that's interesting to people. Additionally, protesting against these criminals is reasonable and prudent. It would be highly imprudent not to raise hell about their abuse of sick people.

 

[LazyLizard]

I wouldn't be surprised if things have radically changed.

What really disgusts me is that there's been no accountability - the same quacks who had spent a decade lying to and abusing patients are now slipping in to a more reasonable approach to CFS, and wondering why it is that so many patients hate them: "It's probably their naive Cartesian dualism."

If they are now starting to view CBT for CFS in the way CBT for MS is viewed, I'd actually be irritated that they didn't stick to their quackery, and let us revel in the absurdity of it for a little longer. Until there's been a fairly radical over-hall, and a number of key people fired, there's no way I could trust them enough to try therapies that may now be of some use.

I also think it is possible they they are being dishonest in the way they present their approach to CBT, and that really, little has changed.

"... I'd actually be irritated that they didn't stick to their quackery, and let us revel in the absurdity of it for a little longer."
I just love this sentence. Nicely said.
Their absurdity does, sadly, have an entertaining effect.

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The PACE trial has done us a favour?
Please!

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I also fully agree with Orions post.