New CBT and GET threat for Aust CFS patients

[RustyJ]

Great article on Prof Lloyd's new push to treat ME and CFS patients with CBT and GET in Australia. Lloyd was arguably the foremost ME/CFS biomedical researcher in Australia, but I guess the funding dried up. He is fast becoming Australia's Simon Wessely, as he has the Aust govt's ear and is likely to swallow up any available funding, if it becomes available.

Note, this article refers to the new study to develop protocols for online implementation of CBT and GET at the University of NSW.

Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably solid data”.

http://www.shoutoutaboutme.com/advocacy/new-cbt-and-get-threat-for-aust-cfs-patients/

 

[halcyon]

Lloyd was arguably the foremost ME/CFS biomedical researcher in Australia, but I guess the funding dried up.

Where has Sonya Marshall-Gradisnik been getting all her funding?

 

[alex3619]

There is another thread on this, or closely related information on the trial itself.

Most of the NCNED funding is private, and the government funding is Queensland government, not federal.

 

[RustyJ]

More on lack of Australian federal funding here

 

[BurnA]

How can a doctor switch from biomedical to CBT / GET. ?

Makes no sense.

 

[Chrisb]

How can a doctor switch from biomedical to CBT / GET. ?

Makes no sense.

Makes perfect sense. We all know of the Vicar of Bray, surely.

https://en.wikipedia.org/wiki/The_Vicar_of_Bray_(song)

 

[Seven7]

How can a doctor switch from biomedical to CBT / GET. ?

Makes no sense.

 

[Old Bones]

How can a doctor switch from biomedical to CBT / GET?

Even worse, in my local ME community in the early 1990's it was quite a scandal when an internal medicine specialist "traded sides". He went from supporting his patients in getting disability benefits, and providing seminars to other medical practitioners and the general public, to working directly for the insurance industry. In doing so, he was responsible for at least some of his previous patients losing their income.

 

[Chrisb]

Even worse, in my local ME community in the early 1990's it was quite a scandal when an internal medicine specialist "traded sides". He went from supporting his patients in getting disability benefits, and providing seminars to other medical practitioners and the general public, to working directly for the insurance industry. In doing so, he was responsible for at least some of his previous patients losing their income.

"First cause no harm." ?

 

[Large Donner]

Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably solid data”.

This car is reasonably safe....

This drinking water is reasonably clean...

This electrician is reasonably qualified.....

This house is reasonably water proof.....

 

[Sean]

Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably solid data”.

So presumably he will accept the null result for CBT and GET in the 2.5 year follow-up paper from PACE, which over rides the previous shorter term results?

 

[Hip]

Wasn't Andrew Lloyd always considered a signed up member of the Wessely school?

Quoting hfme.org:

Members of the ‘Wessely school’ in the UK including Wessely, Sharpe, Cleare and White,

their US counterparts Reeves, Straus etc of the CDC,

in Australia Lloyd, Hickie etc

and the clinicians of the Nijmegen group in the Netherlands each support a bogus psychiatric or behavioural paradigm of ‘CFS’ and recommend rehabilitation-based approaches such as cognitive behavioural therapy (CBT) and graded exercise therapy (GET)

Although it seems that Lloyd, Hickie, and Co have often vacillated from a biomedical view of ME/CFS to a psychological one: this article charts their various U-turns:

In looking through the literature from 1990, one finds that Hickie, Andrew Lloyd, Denis Wakefield and Gordon Parker were quite sure ME (or chronic fatigue syndrome as they called it by then) was a physical disease: "we have demonstrated that while depression and anxiety are common symptoms in people suffering from CFS” [as indeed they are in cancer, AIDS and other physical diseases] “there is no evidence from our well-defined sample to support the hypothesis that CFS is a somatic presentation of an underlying psychological disorder. "

Not long after and with a speed sufficient to boggle the mind, they executed a U-turn: “Though most patients with the chronic fatigue syndrome improve, a substantial proportion remain functionally impaired. Psychological factors such as illness attitudes and coping style seem more important predictors of long term outcome than immunological variables.”

 

[concepcion]

Emails sent.

 

[Dolphin]

The study isn’t evaluating CBT and GET, it already accepts those as “widely acknowledged as best-practice interventions for CFS”, it is training health professionals in:

[..]

Activity pacing and graded exercise therapy

Given that the PACE Trial is mentioned, this may not be to recommend pacing but in fact contrast pacing with graded exercise and say that graded exercise is better.

 

[alex3619]

Given that the PACE Trial is mentioned, this may not be to recommend pacing but in fact contrast pacing with graded exercise and say that graded exercise is better.

That would be yet another error of course. I know you are aware of that @Dolphin, but I thought I would remind others that the PACE trial used an Adaptive Pacing comparison group, which was a treatment protocol used nowhere else and is inconsistent with pacing.

 

[Sea]

Can someone (with better cognitive function than I have at the moment) email the Mason Foundation and enquire how the study they are supporting (teaching doctors to manage cfs with CBT and GET) fits with their criteria for funding for research into cfs. The trustees are probably completely unaware how damaging to patients this will be. They also fund the Griffith uni research (NCNED) so I doubt they have a bent towards psychological theories.

The null PACE follow up would probably be a good start as well as links to some of the harms of GET papers (Tom Kindlon's or ME association surveys)

Any other suggestions or someone willing to do this?

 

[Art Vandelay]

With PACE looking like it will collapse imminently, no doubt we'll see vested interests like Lloyd come out of the woodwork with their own GET studies. They will need 'evidence' to lobby the authorities in order to shore up their own GET/CBT empires.

 

[Cheshire]

How the UNSW chronic fatigue syndrome studies use ‘potentially harmful’ guidelines

Interviewing Prof Andrew Lloyd last year for this story, he explained he was working on an online program of graded exercise therapy (GET) and cognitive behavior therapy (CBT) program at the University of NSW’s Fatigue Clinic.

Prof Lloyd described the PACE trial, which evaluated these therapies, as having “reasonably solid data”.

The University of NSW has now registered a trial to ‘investigate the efficacy of online continuing education for health professionals to improve the management of chronic fatigue syndrome’.

The study is designed to educate medical professionals. Prof Lloyd said it would ‘protocolise the intervention’ and that he had a grant to turn into an online module and evaluate it.

The study isn’t evaluating CBT and GET, it already accepts those as “widely acknowledged as best-practice interventions for CFS”

https://meaustralia.wordpress.com/2...e-studies-use-potentially-harmful-guidelines/

 

[simeyss]

With PACE looking like it will collapse imminently, no doubt we'll see vested interests like Lloyd come out of the woodwork with their own GET studies. They will need 'evidence' to lobby the authorities in order to shore up their own GET/CBT empires.

Yes, I think that is exactly what is happening here.
The researcher has confirmed that the online course is based on their program which has treated 600 people.

About it she said:
"The program has shown sustained benefit with reduced fatigue and improved functional status. These outcomes have been described in a forthcoming scientific publication. Importantly, the program should not be equated with the intervention provided in the PACE trial, and did not cause sustained deterioration in any patients."

They are working very hard to distinguish their program from PACE, whilst also building an evidence base to support it. To me, this feels like it could shape up to be PACE Mark II.

 

[Sean]

"The program has shown sustained benefit with reduced fatigue and improved functional status. These outcomes have been described in a forthcoming scientific publication. Importantly, the program should not be equated with the intervention provided in the PACE trial, and did not cause sustained deterioration in any patients."

Run away!
Run away!