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NYT: "Getting It Wrong on Chronic Fatigue Syndrome" by REHMEYER and TULLER

Murph

:)
Messages
1,799
I wonder if we will see large scale legal action by GET victims. If it is demonstrated that the mitochondrial problems can result in exercise being very harmful, and that patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored, and that maybe PACE even covered up harm, then yes we may well see legal action.

There is still a lot of PACE data that hasn't been investigated independently. This includes audio tapes of patients speaking with therapists. Do these tapes contain evidence of harm? Is this why PACE authors are desperately trying to "protect patient anonymity"?

Wouldn't it be nice to see a big legal win against QMUL create a funding stream for a whole lot of research somewhere else!
 

PatJ

Forum Support Assistant
Messages
5,288
Location
Canada
patients were for twenty years trying to tell authorities and researchers that exercise is harmful only to be ignored

We would never have got anywhere near this point without "working on raising awareness of the problems", and now is the time, more than ever, to keep on with that. The race is not won until it is done, and you have to continually strive for the winning post until it is.

First they ignore you,
then they laugh at you,
then they fight you,
then you win.

―Mahatma Gandhi
 

A.B.

Senior Member
Messages
3,780
I find that with such people I cannot help laughing to myself about them throughout the whole process anyway.

If we look past the tragedy, It's quite funny how they are constructing "all in the mind" models describing something that mostly exists in their own minds but not the real world. Their model of CFS involves hysterical irrational patients living in fear of illness and deconditioning themselves. Reality is that patients typically learn to reduce activity levels by first making themselves worse because they underestimate the illness and are taken by surprise by PEM dynamics.

Stories about mysterious psychosomatic illness and cures are constructed from simple methodological errors or flawed logic,ie. the dozens of unblinded studies with subjective endpoints that measure illness perception and therapies that revolve around changing illness perception. It's so absurd you couldn't make this up.

How they consistently fail to consider simple and obvious explanations for an observations merely because it doesn't align with their psychosomatic beliefs, ie. membership of a support group correlating with illness severity is interpreted as support groups making patients sicker (by that logic, we should close all hospitals).

How every thought and action on the part of the patient is interpreted as moral failure and irrationality, ie. the ridiculous idea that seeking treatment and believing to be ill is abnormal.
 
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Cinders66

Senior Member
Messages
494
If we look past the tragedy, It's quite funny how they are constructing "all in the mind" models describing something that mostly exists in their own minds but not the real world. Their model of CFS involves hysterical irrational patients living in fear of illness and deconditioning themselves. Reality is that patients typically learn to reduce activity levels by first making themselves worse because they underestimate the illness and are taken by surprise by PEM dynamics.

Stories about mysterious psychosomatic illness and cures are constructed from simple methodological errors or flawed logic,ie. the dozens of unblinded studies with subjective endpoints that measure illness perception and therapies that revolve around changing illness perception. It's so absurd you couldn't make this up.

How they consistently fail to consider simple and obvious explanations for an observations merely because it doesn't align with their psychosomatic beliefs, ie. membership of a support group correlating with illness severity is interpreted as support groups making patients sicker (by that logic, we should close all hospitals).

How every thought and action on the part of the patient is interpreted as moral failure and irrationality, ie. the ridiculous idea that seeking treatment and believing to be ill is abnormal.


I'm continually baffled by how this pile of c**** which is the (B)PS model is shafting us all. The bio is ignored mostly in the writings of Wessely, White, Chalder, Wealden etc although the former have dabbled in it and generally we are treated as if we are essentially out of sorts through lack of activity and basically deluded. We aren't treated with the kindness sick people are or with the patience and decency I hope psychiatric patients are, it's a strange mix of not being worthy at all (as in organically physically ill or psychiatric) but instead presented as psychologically deluded, didficult, weak and wilfully physically inactive.


It's easy to totally blame the BPS lot with their poor science and insistence on telling the world that all we need is their GET and CBT but it's not quite that simple. Way back around ten years ago Wessely was saying something like 1/3 of patients we can do nothing for, the FINE trial, with null results , was published around 2010 and yet MRC still haven't done much of worth for the severe and entrenched. Their refusal to draw in researchers with the lure of guaranteed ring fenced money whilst brazingky blaming patients supposed hostility for the lack of interest in the field goes unchallenged and now we have their giant sticking plaster of MEGA supposed to placate/distract us for the next few years. We need organised patient action against their organised inaction rather than waiting for isolated teams worldwide to find something that forces change.
 

Jonathan Edwards

"Gibberish"
Messages
5,256
Does anyone know if the NYT paper version can be bought in the UK?

Would be great way to show thanks to NYT and to keep the paper copy as it is a big moment in destroying Pace given the circulation and respect that the NYT has.

Been waiting for years for this 30 year scandal of wessely and his partners in crime to breakthough in major news media.

Can't help on that I am afraid but they have (or had) a copy in the Bellier Hotel in Val D'Isére this morning. It seems to have gone missing....
 
Messages
66
If we look past the tragedy, It's quite funny how they are constructing "all in the mind" models describing something that mostly exists in their own minds but not the real world. Their model of CFS involves hysterical irrational patients living in fear of illness and deconditioning themselves. Reality is that patients typically learn to reduce activity levels by first making themselves worse because they underestimate the illness and are taken by surprise by PEM dynamics.

Stories about mysterious psychosomatic illness and cures are constructed from simple methodological errors or flawed logic,ie. the dozens of unblinded studies with subjective endpoints that measure illness perception and therapies that revolve around changing illness perception. It's so absurd you couldn't make this up.

How they consistently fail to consider simple and obvious explanations for an observations merely because it doesn't align with their psychosomatic beliefs, ie. membership of a support group correlating with illness severity is interpreted as support groups making patients sicker (by that logic, we should close all hospitals).

How every thought and action on the part of the patient is interpreted as moral failure and irrationality, ie. the ridiculous idea that seeking treatment and believing to be ill is abnormal.

Well said. And well done to Julie and David on their brilliant achievement. Thank you.
 
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char47

Senior Member
Messages
151
well
If we look past the tragedy, It's quite funny how they are constructing "all in the mind" models describing something that mostly exists in their own minds but not the real world. Their model of CFS involves hysterical irrational patients living in fear of illness and deconditioning themselves. Reality is that patients typically learn to reduce activity levels by first making themselves worse because they underestimate the illness and are taken by surprise by PEM dynamics.

Stories about mysterious psychosomatic illness and cures are constructed from simple methodological errors or flawed logic,ie. the dozens of unblinded studies with subjective endpoints that measure illness perception and therapies that revolve around changing illness perception. It's so absurd you couldn't make this up.

How they consistently fail to consider simple and obvious explanations for an observations merely because it doesn't align with their psychosomatic beliefs, ie. membership of a support group correlating with illness severity is interpreted as support groups making patients sicker (by that logic, we should close all hospitals).

How every thought and action on the part of the patient is interpreted as moral failure and irrationality, ie. the ridiculous idea that seeking treatment and believing to be ill is abnormal.
said AB
so thrilled this article has made it through. what an achievment for J & D to get it in the PRINT!! edition of the NYT. huge thanks to them.
 

Cinders66

Senior Member
Messages
494
The thing is what happens in USA isn't rocking boat in uk. It isn't just the PACE authors who won't want to u turn , but the journals, the NHS, the press like bbcs tom fielding who's presented the ilness as psychiatric and who've revelled in the "controversial illness /militants patients narrative '. No ones going to want to admit that the MRC and NHS and themselves had it wrong and that those Whiney people they were advising to exercise were actually very sick with legitimate grievance. And even the current head of the royal colleges of psychiatrists was actually completely wrong.

It's like the church can't admit the Bible is wrong on homosexuality because then their and it's authority is diminished and up for question