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Picariello, Chalder et al: "It feels sometimes like my house has burnt down,[...]"

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2,158
Agree totally, @Molly98 - being listened to and understood is a powerful help psychologically, but does nothing for us physically.

An example where CBT was tested against supportive listening was the FINE trial, the sister trial of PACE. It never gets talked about by the psychs because it showed there was no difference between the two treatments on their questionnaires at the end of a year.
 
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Molly98

Senior Member
Messages
576
An example where CBT was tested against supportive listening was the FINE trial, the sister trial of PACE. It never gets talked about by the psychs because it showed there was no difference on their questionnaires at the end of a year.
I didn't know that, thats interesting. I wish we could just get on and do these trials ourselves, would be good if Chalder and co would point 10 or so of their new ME recruits our way as a 'control group' and we welcome them into the community and give them support on PR. Then compare that with their CBT.
Can you imagine their embarrassment ( and rage probably) if PR came out as the most effective support strategy for people with ME.
 

Effi

Senior Member
Messages
1,496
Location
Europe
being listened to and understood is a powerful help psychologically, but does nothing for us physically
Another really important thing that we should always keep in mind, is that PACE CBT is not regular CBT. PACE CBT is aimed directly at changing false illness beliefs. It is not aimed at support or coping with grief over lost abilities. When people generally talk about CBT, they think about the support you can get from a general therapist. But PACE CBT doesn't work this way. I have read in various specific ME/CFS CBT-type manuals things like: 'do not console the patient when he starts crying during an exercise'. They see crying as just another kind of avoidance behavior that should be exterminated from the patient's psyche. Not very supportive, is it?

This is how BPS works: they change the meaning of generally well-known terms in order to muddy the waters enough to be able to spin their story any which way they please.
 

Effi

Senior Member
Messages
1,496
Location
Europe
Rational Emotive Behavior Therapy
That actually sounds a lot like PACE CBT! They keep recycling and repackaging old hypotheses over and over and over so I wouldn't be surprised if it really was based on something like REBT.

Wikipedia said:
Rational emotive behavior therapy (REBT), previously called rational therapy and rational emotive therapy, is a comprehensive, active-directive, philosophically and empirically based psychotherapy which focuses on resolving emotional and behavioral problems and disturbances and enabling people to lead happier and more fulfilling lives.
 

Molly98

Senior Member
Messages
576
Brainwashing I think is the most appropriate term when used in the context of ME / CFS.

I don't know why they don't just use hypnotherapy to change all our faulty illness beliefs, could be done in one or two sessions, far more effective and efficient, would save the NHS money, and that's what it is all about.... except it can't be because otherwise it would have been implemented, so it must be to save the careers of the BPS crowd and their empires.
 

Invisible Woman

Senior Member
Messages
1,267
‘Here I am said:
what choice do I have[/U]. And that was the way I felt at the time’ (pt12)'

"Dolphin, post: 832387, member: 16"]I think the underlined bit may show how vulnerable people can be. They can be at the end of the tether and feel they have to try everything. This could lead them to try therapies that are potentially harmful to their physical and/or mental health.

I think this could also be read as : this is all that there is in terms of treatment choice and if I don't do this then I am worried that my doctor will start telling me I don't want to get well, even though I might not feel able for, or want to go down this path.

I think some folk are extremely vulnerable. They may very well feel that if they don't do everything they can to keep their doctor happy then the doctor may stop listening to them or refuse to treat (as in the whole MUS scenario). So they may well go along with things they don't feel are right for them and in an effort to show willing they may even be prepared to lie to the therapist - yes, I want to give this a go; no, it's not a cure but it has helped; of course I'll be a nice cooperative patient and answer this questionnaire for you.

Their vulnerability leaves these patients open to feeling pressure and being exploited, in my view. Then this testimony used to suck other vulnerable people in.
 

Invisible Woman

Senior Member
Messages
1,267
Another really important thing that we should always keep in mind, is that PACE CBT is not regular CBT. PACE CBT is aimed directly at changing false illness beliefs. It is not aimed at support or coping with grief over lost abilities.

This is so true. I was talking to a phone pal about CBT and she couldn't understand what all of the fuss was about. It had helped her enormously. When I asked her in what way - could she do more etc, she explained that she had no physical improvement but it had helped her to cope better. As she pointed out: what's wrong with that?

So I asked her to describe CBT as she experienced it to me: therapist listened, explored ways of saying no to people who were expecting her to do more than she could, talked about the importance of resting as much as she needed and how to prioritize her life so that she could cope better ......

When I explained how the PACE version of CBT worked she couldn't believe. She had spent all that time telling people CBT was a wonderful thing and that they should definitely do it and had no idea that not all CBT is the same.

Anyone selling consumer goods who pulled this - we'll call it Brand X but we really mean rebadged Brand Z would be investigated by Trading Standards in the UK.
 

Dolphin

Senior Member
Messages
17,567
I would like to see a trial comparing person centred counselling to CBT for ME CFS, my guess is that positives reported from CBT are not to do with CBT but are to do with being listened to ( this is a biggy when you feel you have been dismissed by most other medical professionals) the non-judgemental, safe environment and the therapeutic relationship and feeling supported. These are the fundamentals of pretty much all therapies and have a lot to do with the personal qualities and therapeutic skills of the therapist NOT the mode of therapy - CBT.
Chronic fatigue (rather than CFS) trial:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1313894/
Br J Gen Pract. 2001 Jan;51(462):19-24.
Chronic fatigue in general practice: is counselling as good as cognitive behaviour therapy? A UK randomised trial.
Ridsdale L1, Godfrey E, Chalder T, Seed P, King M, Wallace P, Wessely S; Fatigue Trialists' Group.
Author information

Abstract
BACKGROUND:
Fatigue is a common symptom for which patients consult their doctors in primary care. With usual medical management the majority of patients report that their symptoms persist and become chronic. There is little evidence for the effectiveness of any fatigue management in primary care.

AIM:
To compare the effectiveness of cognitive behaviour therapy (CBT) with counselling for patients with chronic fatigue and to describe satisfaction with care.

DESIGN OF STUDY:
Randomised trial with parallel group design.

SETTING:
Ten general practices located in London and the South Thames region of the United Kingdom recruited patients to the trial between 1996 and 1998. Patients came from a wide range of socioeconomic backgrounds and lived in urban, suburban, and rural areas.

METHOD:
Data were collected before randomisation, after treatment, and six months later. Patients were offered six sessions of up to one hour each of either CBT or counselling. Outcomes include: self-report of fatigue symptoms six months later, anxiety and depression, symptom attributions, social adjustment and patients' satisfaction with care.

RESULTS:
One hundred and sixty patients with chronic fatigue entered the trial, 45 (28%) met research criteria for chronic fatigue syndrome; 129 completed follow-up. All patients met Chalder et al's standard criteria for fatigue. Mean fatigue scores were 23 on entry (at baseline) and 15 at six months' follow-up. Sixty-one (47%) patients no longer met standard criteria for fatigue after six months. There was no significant difference in effect between the two therapies on fatigue (1.04 [95% CI = -1.7 to 3.7]), anxiety and depression or social adjustment outcomes for all patients and for the subgroup with chronic fatigue syndrome. Use of antidepressants and consultations with the doctor decreased after therapy but there were no differences between groups.

CONCLUSION:
Counselling and CBT were equivalent in effect for patients with chronic fatigue in primary care. The choice between therapies can therefore depend on other considerations, such as cost and accessibility.
 
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66
I agree with so many of the comments already made. This study proves nothing except the wilful delusion and bias of its researchers. It's based on primed subjective questioning and concludes with speculative assumption - exactly my experience of attending the 'specialist clinic' at King's for a course of CBT with one of their 'experts' (I was told at the end of the course that it hadn't worked for me as I hadn't 'bought in' to the process.)

How this absurd nonsense gets funded and published deserves to be challenged and investigated and I am so grateful that academic health researchers such as @Keith Geraghty and David Tuller are doing just that. Thank you for all your efforts in exposing what is effectively a conflict of interest and collusion with political and commercial interests.
 

Molly98

Senior Member
Messages
576
So I asked her to describe CBT as she experienced it to me: therapist listened, explored ways of saying no to people who were expecting her to do more than she could, talked about the importance of resting as much as she needed and how to prioritize her life so that she could cope better ......

Yes and what she is confusing here is that this is not to do with CBT what she is describing are what any counsellor/ therapist would have / could have done, and in my opinion what a support worker or trained peer support person could do equally well, or certainly well enough to be of considerable benefit, it's really nothing to do with the mode of CBT. It is really just passing on information and supporting someone to manage the limitations of their health condition as best possible- common sense with the aid of a supportive relationship. This would be helpful to pretty much anyone whatever health condition they suffered with.
 

Molly98

Senior Member
Messages
576
WTF is with all this CBT is the answer to all ills and health problems then, why on earth is money still being put into this shit.

We have a serious long-term health condition, which results in an awful lot of loss and serious limitations, a lot to come to terms with. We need support and to be listened to and our suffering and pain and loss validated. That is the only role any counselling or psychological therapy of any kind should take.

At the same time, we need bio medical research to explore possible treatments.

They are two very separate things.
 
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1,478
Yep. I'm usually a fan of recycling, but some junk just really needs to go in the trash.
Just couldn't put a double like ...so thought I would also add a "good comment" :thumbsup:

Thinking commercially for a moment, if cost saving is the order of the day and Pace has shown no improvement, shouldn't we argue that the real cost saving would be to scrap it altogether? That gives the government what they want.

That still leaves us with no treatment, but at least no one gets harmed while we are waiting for a research breakthrough? Perhaps if we work out what 2 years worth of savings it would give them, and negotiate 50% of the saving for a review of nice guidelines and a research fund to be managed by the MEA? I'm sure that would have some appeal and be better than what we've got now?
 

Invisible Woman

Senior Member
Messages
1,267
Thinking commercially for a moment, if cost saving is the order of the day and Pace has shown no improvement, shouldn't we argue that the real cost saving would be to scrap it altogether? That gives the government what they want.

You are right and if only the world worked like that...

The true cost of not treating people effectively and pawning them off with the equivalent of a bandaid is vast: loss of the patient's economic contribution and possibly that of their carer, non financial cost to wider society, loss to employers, cost to the healthcare system and social services and the benefit system.

On the other hand: the current system is perceived to save money for insurance companies, benefits system and social services. With the way the whole MUS business is going in the UK they'll soon be trimming back on healthcare too.

That is the whole problem with short term politics - always seem to go for short term gain or saving over long term cost. If the guys in power can seem to be saving a few quid while they peddle their influence they're happy.
If their families or pals are share holders or receive plum jobs/grants from insurers or the likes of Capita and ATOS or G4S or A4e etc. then happy days.

If stigmitizing and further disabling a bunch of sick people who could otherwise be leading productive lives is unfair, it won't cost 'em a wink of sleep. As long as "I'm alright Jack"
 

Dolphin

Senior Member
Messages
17,567
Just couldn't put a double like ...so thought I would also add a "good comment" :thumbsup:

Thinking commercially for a moment, if cost saving is the order of the day and Pace has shown no improvement, shouldn't we argue that the real cost saving would be to scrap it altogether? That gives the government what they want.

That still leaves us with no treatment, but at least no one gets harmed while we are waiting for a research breakthrough? Perhaps if we work out what 2 years worth of savings it would give them, and negotiate 50% of the saving for a review of nice guidelines and a research fund to be managed by the MEA? I'm sure that would have some appeal and be better than what we've got now?
Nice idea but this isn't how research is funded according to the system.
 

ladycatlover

Senior Member
Messages
203
Location
Liverpool, UK
I think this could also be read as : this is all that there is in terms of treatment choice and if I don't do this then I am worried that my doctor will start telling me I don't want to get well, even though I might not feel able for, or want to go down this path.

One of the major problems is that you can be more or less forced to undergo CBT in UK if you are trying to claim under insurance. I imagine it's only a matter of time before the same is true for claiming ESA and PIP. :mad:
 

antherder

Senior Member
Messages
456
When I explained how the PACE version of CBT worked she couldn't believe. She had spent all that time telling people CBT was a wonderful thing and that they should definitely do it and had no idea that not all CBT is the same.

Thanks for sharing this. I think it illustrates how the PACE version of CBT is kinda like a wolf in sheep's clothing. Patients expect helpful "rumination," (admittedly not the right word to use given it's psychological interpretation, but hey), but in reality, they get ripped to bits.

I'm guessing this has been discussed already on other threads, but can someone well versed on the details please comment on whether this is one of the PACE criticisms - were the participants recruited for the study unaware that they were signing up for a MAD version (Mock and Dismiss) of CBT?
 

me/cfs 27931

Guest
Messages
1,294
'It feels sometimes like my house has burnt down, but I can see the sky'
I can't help but be reminded of the old Neil Young protest song "Rockin' In The Free World", where Young sang with dripping irony about the "kinder gentler" "thousand points of light" "UN 'peacekeeping'" George H.W. Bush presidency:

"We got a thousand points of light, for the homeless man. We got a kinder, gentler machine-gun hand." - Neil Young


It feels sometimes like my house has burnt down, but I can see the sky in this kinder gentler CBT world.
 
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