Generalised worry in patients with [CFS] following Cognitive Behavioural Therapy - a prospective cohort study in secondary care, 2022, Chalder et al

[Adrian]

I may be missing something here, but there seems to be something curious about the demographic data (p27) - e.g. summing the "Occupational status" column, you get 370. There were 470 patients, so what about the other 100? If you sum the "Marital status" column, you get 460, which is probably explicable by 10 patients not answering the question, but what about the lack of occupational status data for 100 patients? Was this data not collected from the entire patient cohort?

It does look like they have a lot of missing data - it may be that they never collected/recorded everything or people just didn't fill out the forms. But they are not being clear about it. I also thought the "polytechnic" catagory in education was a bit weird as they became univerities many years ago so there is an implicit age thing there as well as an academic bias - also no further education catagory.

 

[Adrian]

Analysis indicated a high prevalence of generalised worry (72.4%) at assessment. A significant reduction in worry following CBT (M=-3.42, p<.001, 95%CIs: 2.26, 4.57) was observed at discharge, which remained stable at follow-up

I think the time line may be interesting. If they ask people about anxiety prior to them getting a solid diagnosis and then after CBT they can't rule out other things such as the importance of having a diagnosis (which can help and getting one can be really stressful). It seems sloppy (but I've not read the paper).

 

[chrisb]

This suggests that CFS patients may benefit from targeting generalised worry during CBT.

Why do they think that the 27.6% of CFS patients who, by their findings, do not suffer from generalised worry would benefit from CBT?

Their figures seem to be broadly in line with those in the 1989 Wessely and Powell paper. The same same objections still apply, and have probably never been seriously addressed.

 

[Ebb Tide]

Has the WSAS been validated for physical disabilities? On a quick search it seems to be an outcome measure for mental health conditions.

https://www.cambridge.org/core/jour...-functioning/A23DD5A7256D13707859AC164B0A073C

The form states a score of 20 or over suggests "moderately severe or worse pyschopathology", which scoring a 4/definitely (or higher) impaired in the areas of life in the 5 questions would get you.

 

[SallyC]

People who have a disease that is not understood, is severe and disrupts their life, there is no treatment and they get told falsehoods by authority figures, and they are mistreated by friends and family - the people who need therapy are the ones who are not worried, concerned or anxious.

I remember saying this exact thing to my GP. It would be far more concerning if I was just breezing through, saying everything is fine!

 

[Keela Too]

I remember saying this exact thing to my GP. It would be far more concerning if I was just breezing through, saying everything is fine!

Yet also, although naturally “worried”, this is not something that a doctor should feel they need to treat!

Edit - Nor in my view should they attempt to treat if we don’t look worried enough!!

 

[Mithriel]

Has the WSAS been validated for physical disabilities? On a quick search it seems to be an outcome measure for mental health conditions.

https://www.cambridge.org/core/jour...-functioning/A23DD5A7256D13707859AC164B0A073C

The form states a score of 20 or over suggests "moderately severe or worse pyschopathology", which scoring a 4/definitely (or higher) impaired in the areas of life in the 5 questions would get you.

I scored 46! It is ludicrous to use a scale like that for physical disorders, not just ME but every physical disorder. It seems strange to me that it can be used for a mental disorder either.

Work and Social Adjustment Scale
Rate each of the following questions on a 0 to 8 scale: 0 indicates no impairment at all and 8 indicates very severe impairment.

1. 1.Because of my [disorder], my ability to work is impaired. 0 means not at all impaired and 8 means very severely impaired to the point I can't work.
   
   
2. 2.Because of my [disorder], my home management (cleaning, tidying, shopping, cooking, looking after home or children, paying bills) is impaired. 0 means not at all impaired and 8 means very severely impaired.
   
   
3. 3.Because of my [disorder], my social leisure activities (with other people, such as parties, bars, clubs, outings, visits, dating, home entertainment) are impaired. 0 means not at all impaired and 8 means very severely impaired.
   
   
4. 4.Because of my [disorder], my private leisure activities (done alone, such as reading, gardening, collecting, sewing, walking alone) are impaired. 0 means not at all impaired and 8 means very severely impaired.
   
   
5. 5.Because of my [disorder], my ability to form and maintain close relationships with others, including those I live with, is impaired. 0 means not at all impaired and 8 means very severely impaired.

Social anxiety can easily score 20 or more.

 

[alex3619]

It is ludicrous to use a scale like that for physical disorders,

Example - you are physically paralyzed. Therefore the whole issue is anxiety on this scale. Its OK, therapy will cure your paralysis.

Scales like this, if used at all, must have severe limitations when and how they are used. This might, I don't know the scale, but if so its being misused.

 

[Trish]

@dave30th can you take a look at this one. It's paywalled, so most of us can't read it.

 

[Adrian]

Yet also, although naturally “worried”, this is not something that a doctor should feel they need to treat!

Edit - Nor in my view should they attempt to treat if we don’t look worried enough!!

If patients are worried early on as diagnosis happens it could be useful for a doctor to find out specific things that are worrying them and provide better information and advice. For example, someone could be worried about work and how to deal with occupational health so advice on this could be useful.

But a general 'worried' isn't really a useful concept.

 

[Keela Too]

Yes to advice - absolutely, but treatment is something else, it suggests the worry is not appropriate.

 

[Adrian]

Yes to advice - absolutely, but treatment is something else, it suggests the worry is not appropriate.

I think it shows how deluded the people writing this paper are to talk about worry as a general concept with the idea that if you tell people not to worry they will get better. But I do think as a practical thing doctors who can recognize specific worries and deal with them in practical ways can be helpful. If they were doing valuable research then they may pick up on something like that but they aren't they just want to publish papers that raise their publication count and try to dismiss patients.

 

[dave30th]

The woman has been studying CBT for CFS for 30+ years. She just noticed that patients worry??

 

[Trish]

Links to some of the questionnaires used

Penn State Worry Questionnaire (PSWQ)

The Work and Social Adjustment Scale

Hospital Anxiety and Depression Scale (HADS)

 

[Trish]

Comments
The Penn State Worry Questionnaire gives scores ranging from 16 to 80 where 16 means you chose the lowest scoring option on each of 16 statements, and 80 is the highest level of worry.
They chose 45 as the cut off point for significant worry. Yet they categorise everyone scoring 16 to 45 as 'mild generalised worry'. So on that basis, everyone in the world is worried, even if they report they are never worried.
Most of the statements you are asked to respond to could be influenced by the life changes ME/CFS forces on the person and the lack of support and care they are getting, not by any psychological worry disorder. Who wouldn't be worried if they are struggling to keep a job and work rate because of physical illness and are getting no support, and being told by their therapist that their symptoms are the result of fear avoidance.

I had a look at the Hospital Anxiety and Depression Scale (HADS). It's completely inappropriate for measuring anxiety and depression in ME/CFS because many of the questions are about activities, which for someone with ME/CFS are likely to be limited by physical and/or cognitive disability, not by anxiety or depression. It's no wonder they keep insisting so many of us have comorbid anxiety and depression disorders.

The Chalder Fatigue questionnaire we've discussed multiple times. We know it's seriously flawed.

 

[Trish]

I did a search for
The fear avoidance subscale of the 40-item Cognitive and Behavioural Responses Questionnaire (CBRQ)

I found this:
https://kclpure.kcl.ac.uk/portal/fi...actor_RYAN_Accepted4October2017_GREEN_AAM.pdf
It's by Chalder's team and from 2017. It seems to be a study based on the same patient set and on the PACE trial participants.
Edit: We have a thread on it here:
https://www.s4me.info/threads/ryan-...behavioural-responses-questionnaire-cbrq.921/

On page 36 the list of statements for each subscale is listed. The one referred to in this study is this:

F1. Fear avoidance
I am afraid that I will make my symptoms worse if I exercise (FA1)
My symptoms would be relieved if I were to exercise (FA2)
Avoiding unnecessary activities is the safest thing I can do to prevent my symptoms from worsening (FA3)
Physical activity makes my symptoms worse (FA12)
Doing less helps symptoms (FA14)
I should avoid exercise when I have symptoms (FA17)

The other subscale used was this one:

F7. Avoidance/resting behaviour
I stay in bed to control my symptoms (L2)
When I experience symptoms, I rest (L3)
I tend to avoid activities that make my symptoms worse (L4)
I tend to nap during the day to control my symptoms (L7)
I sleep when I'm tired in order to control my symptoms (L9)
I avoid making social arrangements in case I'm not up to it (L10)
I avoid exerting myself in order to control my symptoms (L11)
I avoid stressful situations (L13)

That's not fear avoidance. For someone with ME/CFS who gets PEM, that's sensible pacing advice.

The more I look into this the worse it gets.

 

[NelliePledge]

I believe HADs is one of the questionnaires they used at the CFS clinics I went to.

 

[Trish]

I have attempted to wade through the paper, with rising indignation at all the assumptions being made.

I don't know what to make of this in the discussion (my bolding):

Mediation analysis indicated that avoidance behaviour completely mediated the association between worry and work and social adjustment, even after controlling for baseline fatigue and CFS duration. More specifically, worry was associated with avoidance/resting behaviour at baseline, which in turn reduced work and social adjustment following CBT. Baseline worry was not directly associated with work and social adjustment (figure 5). Thus, higher levels of avoidance behaviour in patients with CFS and worry negatively impacted functioning. This finding indicates that worry is associated with behavioural avoidance, in addition to cognitive avoidance (e.g. Borkovec et al., 2004), and confirms the role of avoidance behaviour in maintaining functional impairment in CFS (e.g. De Gucht et al., 2017; Nater et al., 2006). Therefore, reducing avoidance behaviour and generalised worry could improve work and social adjustment in patients with CFS. Methodologically though, avoidance behaviour was measured at baseline, as data mid-treatment were not collected. This is a significant limitation of the mediation model, as it is not possible to establish whether baseline worry predicts avoidance behaviour.

And yet in the conclusion:

Generalised worry appears to be correlated with behavioural avoidance, which subsequently impairs functioning in CFS patients

I've lost the will to live on this one. I hope someone else will pick it apart more effectively than I can and challenge it.

 

[Barry]

On page 36 the list of statements for each subscale is listed. The one referred to in this study is this:


The other subscale used was this one:
That's not fear avoidance. For someone with ME/CFS who gets PEM, that's sensible pacing advice.

The more I look into this the worse it gets.

Absolutely. The disastrous consequence of naively presuming an illness to be what the measurement instrument only works correctly for.

 

[Barry]

And yet in the conclusion:

Generalised worry appears to be correlated with behavioural avoidance, which subsequently impairs functioning in CFS patients

It should be required in papers such as these for a simple progression of logical steps to be listed, showing how an overall logical conclusion has been arrived at. In this case what the interim logical progression is interposed between "Generalised worry", "behavioural avoidance" and "impairs functioning". If they did that they would better be able to see how the whole thing is such a waste of time and money ... including their educations.