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

[Gijs]

Go to the Chalder and Wessely church, believe in CBT, be motivated and say Hallelujah. Don't forget to pray every day to lord Chalder and Wessely for recovery praise them!

 

[SilverbladeTE]

"Another bullshit study exploring abuse victims' views of cognitive behavioural therapy for having been robbed, ruined, tortured and treated like dirt by the Establishment and their bullyboys."

Conclusion: Psychobabblers inhale their own methane deeply and direct from source.

 

[keenly]

What a stupid, meaningless study.

 

[keenly]

I was offered CBT by my doctor. I refused it on the grounds that I felt it would be a useless waste of time for me.

My doctor's terse response? "Well, it won't work if you don't believe in it!".

So, I have cast the notion of CBT aside, along with Santa Claus and the Tooth Fairy . . . .

The irony is palpable. These cretins claim to be the bastions of real science, yet push something not based in any real science.

 

[SilverbladeTE]

The irony is palpable. These cretins claim to be the bastions of real science, yet push something not based in any real science.

and they feel soooooo superior, knowing that leeches and such are old fashioned nonsense!
If it's in the DSM IV, it must be true!
And makes a lot of sales of very addictive and legal drugs, too....

*sniffs with nose in the air like facile, superior, know-nothing jackass*

(Kenneth Williams was a hoot, though, hysterically funny guy )

 

[Dolphin]

Of 13, 12 report various degrees of satisfied, one "slightly dissatisfied". Not exactly maximum variation/saturation. Maximum variation is where you deliberately try to have as big a range of views/experiences as possible. So rather than having lots of people saying similar things, you search out people who are saying different things. It is often used in qualitative research. Similarly qualitative research is often done until saturation is reached i.e. where you think all possible views of people out there have been expressed/similar. It doesn't look like that was the case here.

Similarly of the 13, 12 report various degrees of improvement. One says "very much worse" but says somewhere that doesn't blame the CBT for it

Another participant felt that they had not improved at all:

I feel worse, but not because of CBT. . .I just think I feel worse because my health just generally
degraded (pt13).

 

[Dolphin]

I would have had more confidence in the study if Trudie Chalder wasn't involved. She is a one trick pony regard to CFS: CBT. She is the corresponding author. So uncomfortable truths may not be mentioned in this paper.

 

[Dolphin]

Informed consent was obtained from all study participants. Participants were recruited consecutively and invited to participate if they had finished CBT or were in the follow-up stage. Of thirty-two patients approached for participation, 14 (44%) consented of which 13 were interviewed (41%). Participants were excluded from the study if they did not have a diagnosis of CFS.

 

[Dolphin]

Table 1. Interview schedule

1. What were your expectations of treatment before you came here to the CFS Unit?

2. Do you feel that your expectations of treatment were met? Can you please elaborate on that?

3. How are you feeling now compared to before you started treatment?

4. Did you find any difficulties with the process of attending treatment sessions?

5. What was your experience of using materials such as sleep diaries and activity monitoring sheets as part of the treatment process?

6. Were there any other aspects of your treatment which you found useful and could you tell me a little bit more about this in detail?

7. Did you find any aspects of your treatment were not useful and could you elaborate?

8. Do you think that the treatment was appropriate for you?

9. Do you feel that the length of treatment was appropriate?

10. Can you tell me a little bit more about the process of CBT?

11. Do you think the treatment requires contact with the therapist?

12. What advice would you give to someone who has been just diagnosed with CFS?

13. Would you recommend CBT to other patients with CFS?

14. Is there anything else you would like to add?

 

[Dolphin]

I thought “yes it’s got to do something,” they wouldn’t have these clinics if CBT didn’t work. . .a lot of it you still don’t know what to expect from it ‘cause you just think “it’s a whole lot of talking. . .how’s that really going to help?” (pt10).

Probably quite a few people take like this including some health and medical professionals.

A related finding:

Effect of physician-recommended treatment on mental health practitioners' attributions for chronic fatigue syndrome.

Taylor, Renee R.; Jason, Leonard A.; Kennedy, Cara L.; Friedberg, Fred

Rehabilitation Psychology, Vol 46(2), May 2001, 165-177. http://dx.doi.org/10.1037/0090-5550.46.2.165

Abstract

Objective:

To evaluate whether differing treatment recommendations for chronic fatigue syndrome (CFS) by physicians influence attributions about CFS among mental health practitioners.

Participants and Study Design:

93 mental health practitioners were randomly assigned to 1 of 3 conditions.

All groups read the same case study of a person diagnosed with CFS, with the only difference between groups being the type of treatment recommended by a physician.

The treatment conditions included a drug trial (Ampligen) or 1 of 2 differing psychotherapy approaches, cognitive–behavior therapy with graded activity or cognitive coping skills therapy.

Results:

Ss in the 3 groups did not differ with respect to their prior familiarity with CFS.

Ss who read the case study proposing treatment with Ampligen were more likely to report that the patient was correctly diagnosed and more likely to perceive the patient as disabled than those whose case study described cognitive–behavioral therapy with graded activity as the treatment.

Conclusion:

Results of this investigation support the hypothesis that physician recommendations for CFS treatment can influence subsequent attributions about a patient's illness among mental health practitioners.
(PsycINFO Database Record (c) 2016 APA, all rights reserved)

 

[Dolphin]

Some participants expected that CBT would be a solution to their problems: ‘I was hoping to be cured’ (pt7). However, in some cases the expectation of a cure was linked to poorer outcomes and less satisfaction with CBT, suggesting that some participants were disappointed with the recurrence of CFS symptoms after CBT.

They sort of seem to be blaming the patients here or at least they don't seem to be taking ownership of this: the PACE trial manuals written by Trudie Chalder and others say CFS impairments are reversible with CBT.

 

[Dolphin]

In fact, some participants perceived CBT to be their last resort:

I needed something, I did not know whether CBT was going to be it. But I just knew that nothing else I was doing was improving things. . .I just really hoped that it would improve things for me (pt10).

 

[Dolphin]

Differing views here:

Validation and the process of diagnosis.

Many participants reported difficulty with the process of obtaining a diagnosis. Some were misdiagnosed with other illnesses, which seemed to contribute to a feeling of frustration and disillusionment with the health care system:

there were a lot of blood tests until the point that I was like “I am not doing another blood test, you’ve kind of got everything you need” (pt9).

In fact, one participant felt that the battle to get diagnosed, and the lack of recognition and poor communication from health care professionals, could alienate patients from CBT:

then they might have a bit more positive response from the patients, but not when . . .it is put to most patients that “it is all in your head. . .and see a psychiatrist to sort it out” (pt10).

One participant felt that getting diagnosed and referred to the clinic was ‘almost part of the cure in itself’ (pt9), which emphasizes how validation can be of therapeutic value for this patient population. It seems that getting diagnosed might be the first step towards improvement; yet, the lengthy process of obtaining a diagnosis can potentially act as a barrier to CBT uptake.

Treatment was also a source of validation. Participants stated that CBT helped them to feel understood and to reaffirm that their suffering is real and recognized:

it makes you feel like you didn’t spend years of your life making this up and it makes you feel normal and . . .human (pt13).

The paper does give an idea why people may not be annoyed by Wessely school CBT as much as I would expect.

 

[Dolphin]

Moreover, participants also repeatedly shared their feeling that CBT provided a nonjudgemental environment to express themselves:

she [therapist] never criticized, and I suppose I felt she would. . .[she] would hear you out and wasn’t there to criticise you (pt14).

This allowed participants to disclose to therapists how debilitating CFS can be:

the therapist was crucial because this was a human being who’s got it. . .I wasn’t having to justify myself. . .so if I said I couldn’t get out of bed it was fine and it made sense and that was what I needed (pt9).

CBT as support. For many participants, CBT provided a source of support and a space
for them to speak openly without being judged.

They suggested that CBT allowed them to express themselves and work through difficulties in a non-judgemental, supportive setting.

The thing is that CBT is not like non-directive counselling. The therapist can in fact be judging people. The approach is based on the therapist believing that patients have maladaptive beliefs and behaviours and also then certain beliefs and behaviours that are seen as correct.

 

[Dolphin]

Causal attributions.

The majority of participants, especially those who reported a lack of improvement following CBT, attributed their CFS to an exclusively organic cause. For example, some participants suggested that the treatment should consist of more physical or medical aspects, such as ‘Vitamin D deficiency [testing]’ (pt7), or ‘look[ing] at nutrition’ (pt2), or further blood testing. This type of exclusively physical attribution may act as a barrier to engagement with CBT. For example, one participant displayed open disapproval towards the psychological explanation provided in CBT:

there’s just something around some of the material that. . .might benefit from . . .thinking more explicitly about “actually is this going to alienate someone who does believe in a physical [cause]”. . .there’s a fine line between that and saying actually the things that you are doing are just making you ill, like saying “oh well if you stay in bed for a long time you will feel dizzy or if you stay in bed for a long time you know your muscles will waste away”. . .because actually in my case for example things happened when I didn’t have any prolonged bed rest (pt5).

Looking for something else (examples they give is vitamin the deficiency, looking at nutrition or further blood testing) does not necessarily mean an "exclusively physical attribution". I imagine a lot of patients who are given solely psychological therapy in clinics are similarly frustrated.

 

[Dolphin]

Many participants perceived that their illness did not belong to the realm of mental health problems:

I don’t really want to be seen to be in that group of people. . .I am not having mental health problems (pt10).

Another participant reported ‘feel[ing] stigmatised. . . the [psychiatric hospital] was somewhere where people went when they were seriously ill. . . I felt very ashamed’ (pt12).

The service that Trudie Chalder runs is in a mental health section of a hospital as far as I know.

 

[Dolphin]

Participants were comforted by the knowledge that the therapist was available to them if they needed help:

It has been very comforting to know that I can pick up the phone or I could email [the therapist] to just say “hey I’m a bit concerned about this, what do you think?” (pt12).

When value for money/cost effectiveness calculations are done for CBT, they only tend to include the sessions themselves. This could underestimate the true cost as this extract suggests therapists probably sometimes spend time outside of sessions on patients.

 

[Dolphin]

In fact, the simple act of talking to someone appeared to benefit participants, which emphasizes the importance of the therapist’s role within CBT.

a lot of my life I’ve just had to get on with things and not talk about it. . . it would be boring to talk about it all the time but it’s probably nice to have a space where it’s alright to . . .talk about the effect that it does have on my life (pt5).

This suggests a non-specific effect of talking with somebody rather than CBT specifically.

 

[Dolphin]

However, the ability of participants to invest effort might depend on illness severity and their personal circumstances at the time of therapy. Some participants felt that starting CBT was more suitable for them at a time when symptoms were less severe.

I imagine this could be true. However it's not something I hear people of the CBT school of thought mention often if at all.

 

[Esther12]

This sort of attitude is something I see a lot from patients who are positive about CBT:

Treatment was also a source of validation. Participants stated that CBT helped them to feel understood and to reaffirm that their suffering is real and recognized:

it makes you feel like you didn’t spend years of your life making this up and it makes you feel normal and . . .human (pt13).

We're living in a society where it's assumed that if you're seriously ill, you will be provided with some form a 'treatment'. Treatments from a specialist service can provide some social value even if the treatment itself is worthless. Of course, this serves to further re-inforce the misleading cycle that encourages society to believe ill health means you should be recieving treatment, especially when to justify their costs specialists centres must make misleading calims about their value.