Jackson: Well-being in CFS: Relationship to Symptoms and Psychological Distress

[taniaaust1]

I just can't imagine why patients are (apparently) having trouble with self-acceptance, given how wonderfully accepting and supportive the medical profession and whole world has been for us.

So true.. so many of us are being told by these psychs that we are just lazy!!! etc Are we supposed to have self acceptance that we are lazy, disability grabbing people who just need to push ourselves harder?

 

[taniaaust1]

Im always out looking for motives of things being published when I see stuff coming from London.

Yet, therapies such as CBT, which focus on reducing negative constructs, produce unsatisfactory recovery rates in physical and psychiatric symptoms in this patient group

interestingly is contrasted with the papers

Previous psychological research into CFS has largely focused on the identification of negative constructs and CBT, a treatment that targets evidenced-based negative constructs, has demonstrated efficacy in reducing levels of fatigue and disability.

We've seen this same kind of tactic so many times before.. its say something to like draw the ME/CFS group in or to blind eye them but then to put in what appeals to the psych pushing group

eg in the past with the psychs it has been to make it look like they believe the illness is physical..before throwing in the twist to push its mental health but on this occassion I see it as being, lets support that the CBT was bad.. then they put down what they really want to get through to people reading this and support its good "efficient"

I believe they do this kind of stuff to get these things out there without too much outcry and people who dont know the illness well to know what is crap and what isnt, will probably be more impacted by the line that the CBT "has demonstrated efficacy in reducing levels of fatigue and disability" as that is what they most hear in media so its reminding people of this, it just takes a little tiny mention to strongly reinforce a view they have heard so many times before (its harder to take in a new idea then to reinforce an old).

they are using psychological tactics when putting this research out there. They are putting out research which on first glace appears anti CBT but is it really? (they just reinforced CBT is good!!). Is there a reason why they dont want to fully knock CBT? (they could of easily left out that reinforcement that its good?). There is and they give off their true intentions and the way they want things to head in the next quote I've cut and pasted which to most will look like a quite innocent thing unless its seen in the whole context of this research.

Finding ways to enhance the efficacy of existing treatments is a clinical priority. There is evidence to suggest that in clinical populations, standard CBT is effective at reducing negative affect and thinking but fails to enhance low levels of positive affect and thinking, implying treatments may be more effective if they promote positive functioning alongside a reduction of negative functioning.

Note that first sentence which is the quote from the main research info. (something which is written under heading 'key practioner messages" So what are the "existing treatments" they wish to "enhance efficancy of" with this research? it certainly isnt something like viral treatments!.. this is a psych group. Even if they hadnt mentioned the CBT in that it was obvious what they were refering too. Watch out can you see where this is all headed..

Im going to put out a prediction - we may well see this as being used as an excuse why CBT didnt work well. We may suddenly see a heap of new studies using this new thing ALONG with CBT to "enhance efficacy" (of exsiting treatment) of CBT.

Im going to guess there are few other studies going on in this line right now which will only be published if they get supportive results! A few studies of this supporting this (something to enhance CBT) and they no longer have to worry about failed PACE trial. CBT in a new form can live. (I feel sick just thinking about this, its like a bad nightmare which cant be stopped).

The CBT people are not about to quit and if they can add something else and tell everyone that CBT is more efficient now due to being done little differently (and in process tell people they are about to do studies or have got them going on with "new improved" CBT ..umm may go and rename it), they will do just that.

This challenges the overemphasis on maladaptive cognitive and personality traits in past research and the premise of CBT in trying to remove negative traits'.
On this basis, researchers may wish to shift the paradigm of psychological treatments for CFS away from an exclusive focus on symptom reduction, towards the enhancement of strength, happiness and virtue

"On this basis, researchers may wish to shift the paradigm of psychological treatments for CFS away from an exclusive focus on symptom reduction, towards the enhancement of strength, happiness and virtue"

CBT has failed (PACE) and they need to now twist things, feed people the same concept but redesigned. once again I say watch it, I predict here comes a new improved CBT (under a new name to get from the bad CBT PACE trial reports if they see that as too damaging) said to be now far more efficient due to focus now more towards "strength, happiness and virtue"

this is a taste of what is to come, I wish we knew how to stop all this but we are against a mob of drs who know how to make the most impact upon others and will never admit they were wrong.

 

[Dolphin]

This is work submitted to go along with a much longer thesis.
https://pure.royalholloway.ac.uk/po...IP_TO_SYMPTOMS_AND_PSYCHOLOGICAL_DISTRESS.pdf - 202 pages.

That includes a lot of useful questionnaires.

One can see the questions of the individual subscales :
static1.1.sqspcdn.com/static/f/333946/3300314/1244576827230/Ryff_Scales
or
http://www.ravansanji.ir/?Eself13039SPWB

 

[Dolphin]

Here's a sample subscale that the CFS patients scored poorly on

Self-Acceptance – the extent to which students have a positive attitude about themselves
1. When I look at the story of my life‚ I am pleased with how things have turned out.
2. In general‚ I feel confident and positive about myself.
3. I feel like many of the people I know have gotten more out of life than I have. (rs)
4. I like most aspects of my personality.
5. I made some mistakes in the past‚ but I feel that all in all everything has worked out for the best.
6. In many ways‚ I feel disappointed about my achievements in my life. (rs)
7. My attitude about myself is probably not as positive as most people feel about themselves. (rs)
8. The past had its ups and downs‚ but in general‚ I wouldn't want to change it.
9. When I compare myself to friends and acquaintances‚ it makes me feel good about who I am.

1. When I look at the story of my life‚ I am pleased with how things have turned out.

Very easy to see how somebody whose life has been badly affected by ME/CFS might disagree with this.
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5. I made some mistakes in the past‚ but I feel that all in all everything has worked out for the best.

8. The past had its ups and downs‚ but in general‚ I wouldn't want to change it.

Easy to see how somebody with ME/CFS could disagree with these especially if they feel that something occurred that caused their illness to last longer or be more severe than it might otherwise have been.
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6. In many ways‚ I feel disappointed about my achievements in my life.

ME/CFS could easily affect how much one might achieve in one's life so again easy to see poor scores here.

3. I feel like many of the people I know have gotten more out of life than I have.

Similarly with this, by definition ME/CFS causes reduced activity.
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Other questions in the subscale could probably be affected also directly and indirectly for some people but these stood out to me.

 

[Dolphin]

I find the use of "evidence-based" with regard to CBT a bit annoying given they don't assess CBT in this study:

Previous psychological research into CFS has largely focused on the identification of negative constructs and CBT, a treatment that targets evidenced-based negative constructs, has demonstrated efficacy in reducing levels of fatigue and disability. However, the majority of people continue to experience psychiatric symptoms and excessive levels of fatigue post-treatment. Finding ways to enhance the efficacy of existing treatments is a clinical priority.

Standard CBT for CFS targets evidence-based negative processes, e.g., depression, perfectionism and fear avoidance and according to National Institute of Clinical Excellence NICE (2007) is the recommended treatment.

CBT, a treatment that targets evidenced-based negative constructs, has demonstrated efficacy in reducing levels of fatigue and disability in this population.

 

[Dolphin]

I'm guessing some people won't follow the links to the questionnaire so here is another subscale that the CFS patients scored poorly on. Again not that surprising really.

Environmental ma‎stery – the extent to which students feel in control of and able to act in the environment

1. In general‚ I feel I am in ch‎arge of the situation in which I live.

2. The demands of everyday life often get me down. (rs)

3. I do not fit very well with the people in the community around me. (rs)

4. I am quite good at managing the many responsibilities of my daily life.

5. I often feel overwhelmed by my responsibilities. (rs)

6. I generally do a good job of taking care of my personal finances and affairs.

7. I am good at juggling my time so that I can fit everything in that needs to be done.

8. I have difficulty arranging my life in a way that is satisfying to me. (rs)

9. I have been able to build a home and a lifestyle for myself that is much to my liking.

 

[Dolphin]

This is better than what one would probably find in a paper by a strong proponent of CBT for CFS:

Given the profile of psychological well-being, clinical services may wish to prioritize ways of promoting environmental mastery, personal growth and self acceptance specifically. Difficulties in environmental mastery (managing everyday affairs) may be explained by the CFS’s groups varied and fluctuating symptoms. Sufferers experience unpredictable good days and bad days, a lack of understanding about the nature of their medically unexplained illness and disbelief from professionals. This may make it hard for them to create an environment that can accommodate their needs and many report feelings of helplessness and a loss of control (Anderson & Ferrans, 1997; Clarke & James, 2003).

 

[daisybell]

Environmental mastery + ME/CFS = 0.... that subscale says everything you need to know about the effect of our illness on our lives! Using the word 'mastery' just puts the scale firmly into the realm of psychological weakness/flaws rather than physical impairment.

 

[Dolphin]

The emergence of environmental mastery as a unique predictor of physical symptoms and activity levels supports the use of treatments such as pacing and graded exercise therapy, which help patients break unhelpful boom-bust cycles of activity and obtain a greater sense of stability and control over their illness. Conversely, gaining control over uncontrollable symptoms is not always possible and treatments that help patients accept their limitations may be equally important.

The discussion of pacing in this context seems reasonable and shows understanding.
I don't see why graded exercise therapy should help break any boom-bust cycles unless they are really talking about any pacing aspect of the programme rather than the graded exercise part.

 

[Dolphin]

Ryff and Keyes (1995) define Personal Growth as being open to new experiences and having a sense of oneself as fulfilling one’s potential and developing over time. The significant deficit in this dimension in the CFS group suggests that because of their symptoms and low energy levels, they may not be in a position to be able to have new experiences that are essential for growth.

Again it seems this shows some understanding of how CFS can affect people in general.

 

[Dolphin]

Problems with self-acceptance may reflect the intense psychological challenge that adjustment to living with a chronic illness presents, whereby a person is confronted with the task of incorporating their new limitation into their sense of self and corresponding goals and beliefs. A negative discrepancy between who one currently is and who one used to be (past self), would like to be (ideal self) or ought to be (ought self) is likely to result in feelings of disappointment and dissatisfaction (Goossens et al., 2010).

Again seems to show some understanding.

 

[Dolphin]

A paucity of qualitative studies has examined selfperception in CFS. Consistent with the present study, they document a disrupted sense of identity and competence (Clarke & James, 2003), low self-esteem and a powerful longing for a life lived earlier (Asbring, 2001).

I don't think everyone has low self-esteem but could see how that happens for some people. I can certainly see how the other 2 would be prevalent.

 

[Dolphin]

Through the use of strategies such as compassionate imagery and behaviour, it helps individuals to develop an internal compassionate relationship with themselves and appreciate their efforts, as opposed to simply focusing on whether or not they achieve their goals. It has yet to be tested in CFS. However, as an adjunct to CBT, it has proven to be clinically effective at reducing levels of self-criticism in a variety of clinical populations (Ashworth, Gracey, & Gilbert, 2011; Beaumont, Galpin, & Jenkins, 2012; Braehler et al., 2013; Gale, Gilbert, Read, & Goss, 2014; Lucre & Corten, 2013).

The 1st therapy sounds like it might have potential. But I'm not sure it should be added to the normal form of CBT that is recommended for CFS which is largely about denying patients have true limitations due to the illness and instead should be able to do anything a healthy person should be able to do.
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These are the concluding sentences:

Services would initially benefit from research investigating how effective current treatments are at enhancing well-being in CFS. Then studies examining the efficacy of suggested alternative treatments that have more positive content should be a priority. Used alone or in conjunction with CBT, it may be that they are not only more effective at enhancing well-being but also at reducing symptoms.

Again, I would have preferred if they hadn't mentioned CBT for the reasons I mentioned above.