• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Guided Self-Help for Patients with CFS Prior to Starting CBT: a Cohort Study

hixxy

Senior Member
Messages
1,229
Location
Australia
Behav Cogn Psychother. 2017 May 5:1-19. doi: 10.1017/S135246581700025X. [Epub ahead of print]

Guided Self-Help for Patients with Chronic Fatigue Syndrome Prior to Starting Cognitive Behavioural Therapy: a Cohort Study.

Ali S, Goldsmith K, Burgess M, Chalder T.

Abstract

BACKGROUND:
Previous research suggests that minimal interventions such as self-help guidance can improve outcomes in patients with fatigue or chronic fatigue syndrome (CFS).

AIMS:
The aim of the current study was to investigate whether self-help guidance could improve physical functioning, social adjustment and fatigue in a group of patients with CFS who were awaiting CBT at a clinic in secondary care.

METHOD:
Patients completed questionnaires at their initial assessment (baseline), immediately before beginning CBT (pre-treatment), and after their last session of CBT (end of treatment). The primary outcome was physical functioning, and the secondary outcomes were social adjustment and fatigue. Multi-level linear models were used to assess change over time after adjustment for gender and age.

RESULTS:
Multi-level models revealed that from baseline to pre-treatment, patients showed statistically significant improvements in physical functioning, but there were no statistically significant improvements in fatigue or social adjustment. However, all the primary and secondary outcomes showed statistically significant changes after CBT.

CONCLUSIONS:
The findings of this study indicate that self-help guidance may be beneficial for patients with CFS who are awaiting CBT treatment or those who are unable to access specialist treatment in their local area.

KEYWORDS:
CBT; CFS; Chronic fatigue syndrome; fatigue; minimal intervention; self-help

https://www.ncbi.nlm.nih.gov/pubmed/28473005
https://www.cambridge.org/core/jour...cohort-study/3063BD34233F95C84F630297C5C300FF
 

Hutan

Senior Member
Messages
1,099
Location
New Zealand
I haven't seen the full paper.

But duh, presumably no controls for the CBT bit at least. And if there was a control group that didn't get the self-help guidance, then why is no comparison made with that control group in the abstract? The only modelling of variables mentioned is against time i.e. a comparison against baseline and the start of the CBT for the treated group.

Who knows what the trajectory of these people's health and well-being would have been without any intervention? It's notable that the people had 'fatigue or Chronic Fatigue Syndrome'. And yet the title just mentions Chronic Fatigue Syndrome.
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
More poor methodology. I do understand that with limited budgets then choices have to be made as to what to include in a study. However I am getting to the point where I always want to see objective outcome measures, always. They are a check on the subjective measures. I suspect many of these kinds of approaches fail to produce any positive objective outcome, which is why they avoid objective measures like they were anthrax or something. Yet without objective confirmation I would say we should consider such studies to be below what is an acceptable standard.

I would add the caveat that a small pilot study might use limited outcome measures, but any larger study should be considered substandard without them.

For ME the minimal objective outcome would currently be continuous assessment by actometers. With a bigger budget you can add pre- and post-treatment two day CPET, at least for mild patients. I am not sure how useful actometers would be for severe and very severe patients. Actometers do have the advantage that they are much less likely to make patients worse, unlike CPET.

I am hoping more effective outcome measures will be discovered as the research advances.

Questionnaires should be strictly secondary outcome measures, to give increased data on what might be happening. They do not appear to correlate well with real outcomes in ME or even CFS.

I also think its mandatory to measure long term outcomes, at several time points. PACE, for example, showed regression to the mean, which is typical of results due to methodological bias.

I think we need to be considering developing research standards for ME research, in collaboration with actual researchers, and auto-failing any study that does not use them ... in other words, declare such studies to be substandard. Researchers can choose to develop and use standards, we should not wait for any government agency. However I am well aware that with the many biomarkers under investigation we might not be able to develop stable standards for some time.
 
Last edited:

Sean

Senior Member
Messages
7,378
Studies lacking sufficient statistical power, and either objective outcomes or properly blinded subjective outcomes, simply should not get past the funding stage, let alone final peer-review.

I am hardcore on this issue now. The evidence is beyond doubt: Anything less than that standard is completely unacceptable, and will only lead to hopelessly biased 'research'.
 

Forbin

Senior Member
Messages
966
I wonder what would happen, in a test like this, if all the patients were told that only half of them would receive a form of CBT under investigation and the other half would receive a form of CBT known to be ineffective against CFS.

Patients could not be sure which "type" of CBT they were getting, the investigative form or the useless form, but, in reality, they'd all be getting the investigative form.

I'm suggesting that this uncertainty might dampen the placebo effect.

The question would then be whether the result would differ from a trial where everyone was correctly told that they were getting the investigative form.

Deception like this is pretty routine in general psychological studies of healthy subjects, but I wonder if it would be considered unethical when the subjects have a medical condition.
 

Skippa

Anti-BS
Messages
841
Uninformed patients, just got ill or just been diagnosed, now been offered hope and treatment after previously recieving none...

Read this documentation, full of hope, before we treat you properly... now... do you feel better?

Yes! The message of hope and being listened to has given me hope that therapy will be good.

Conclusion: CBT and pre-CBT messages are helpful.
 

Dolphin

Senior Member
Messages
17,567
Studies lacking sufficient statistical power, and either objective outcomes or properly blinded subjective outcomes, simply should not get past the funding stage, let alone final peer-review.

I am hardcore on this issue now. The evidence is beyond doubt: Anything less than that standard is completely unacceptable, and will only lead to hopelessly biased 'research'.
Yes indeed. Though in this case it was reviewing current practice so little money would have been required.
Financial support: T.C. and K.G. receive salary support from the National Institute for Health Research (NIHR) Mental Health Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London. Views expressed are those of the authors, and not necessarily of the NHS or the NIHR.
 

Dolphin

Senior Member
Messages
17,567
Primary outcome.

There was a statistically significant improvement in physical functioning scores at pre-CBT compared with baseline, with an increase of 2.7 points [95% confidence interval (CI) 0.1 to 5.3, p = .044]. Also, compared with pre-CBT, post-CBT physical functioning scores were 9.6 points higher (95% CI 6.9 to 12.4, p < .001). These comparisons were both adjusted for gender and age, and both covariates were found to significantly influence the outcome (both p < .001).

Secondary outcomes.

Results for social adjustment showed that the change between baseline and pre-CBT scores on the work and social adjustment scale did not reach statistical significance (decrease of 1.0 points, 95% CI –2.1 to 0.1; p = .075). However, post-CBT scores were 7.1 points lower than pre-CBT (95% CI –6.0 to –8.3, p < .001), indicating that patients were less impaired after CBT treatment. These comparisons were adjusted for gender and age, and both covariates were found to significantly influence the outcome (p = .006 and p < .001).

The model examining change in fatigue over time, adjusted for gender and age, found no statistically significant difference in fatigue between baseline and pre-CBT (decrease of 0.7 points, 95% CI –1.7 to 0.3, p = .196). However, fatigue showed a statistically significant improvement (decrease) of 8.0 points at post-CBT compared with pre-CBT (95% CI –6.9 to –9.1, p < .001). Both comparisons were adjusted for age and gender and the results showed that neither gender (p = .058) nor age (p = .135) had any statistically significant influence on the outcome.
So of the three measures, guided self-help only showed an improvement on one, the SF-36 physical functioning subscale.

The magnitude of the improvement was quite small, 2.7 points (the scale is 0-100).

As has been mentioned, there is no control group so we don't know whether some of the people might have improved by this little bit themselves during this period without any intervention.

There were more substantial improvements between pre--CBT and post-CBT but as has been mentioned this study relied solely on subjective outcome measures which may not be that reliable for research on CBT for CFS.

These comparisons were adjusted for gender and age, and both covariates were found to significantly influence the outcome (p = .006 and p < .001).
I don't believe this say in what way does variables affect the results.
 
Last edited:

Dolphin

Senior Member
Messages
17,567
Fatigue can be thought of as a continuum, with acute fatigue at one end and CFS at the other (Lewis and Wessely, 1992).
I dislike this point of view. The fatigue in ME/CFS is also of a different quality to that experienced by healthy people e.g. the postexertional exacerbation and the different symptoms involved.

http://www.dsq-sds.org/article/view/938/1113

Examining Types of Fatigue Among Individuals with ME/CFS

Abstract

Severe, persisting fatigue is a prominent symptom of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), but individuals with this illness frequently report the occurrence of unique fatigue states that might be different from conventional symptoms of fatigue.

The present study attempted to assess a comprehensive set of fatigue symptoms that have been commonly reported among patients with ME/CFS.

A 22-item fatigue questionnaire was developed and administered to 130 persons diagnosed with ME/CFS and 251 controls.

Adequate scale reliability was found.

Factor analyses revealed a five-factor structure for participants with ME/CFS but only a one-factor solution for the control group.

The new scale was also contrasted with other more traditional scales developed to measure fatigue.

Findings suggest that individuals with ME/CFS experience different types of fatigue than what are reported in the general populations.
 

Dolphin

Senior Member
Messages
17,567
Minor points:
Fatigue is also the primary symptom of chronic fatigue syndrome (CFS), which is also referred to as ME (myalgic encephalomyelitis or myalgic encephalopathy), or CFS/ME. CFS is characterized by persistent fatigue and symptoms such as pain and sleep disturbance (Fukuda et al., 1994). The illness can be extremely disabling and has impacts on social and occupational functioning and health-related quality of life (Cella et al., 2011b; Hardt et al., 2001). It affects approximately 2.6% of the population, and is more prevalent in women than in men (Jason et al., 1999; Kroenke et al., 1988; Wessely et al., 1997).
Not everyone agrees that fatigue is the primary symptom of CFS. Most people do not agree that the prevalence of CFS is as high as 2.6%.
 

Dolphin

Senior Member
Messages
17,567
Often, the demand for psychological therapies in the population outweighs the available resources. This situation applies to psychological therapies generally, but it is also true for the treatment of fatigue and CFS, where resources are limited and demand for psychological therapies is high.
I don't know what the evidence is for this statement?
 

Dolphin

Senior Member
Messages
17,567
Minor point:
Minimal interventions are brief patient-led or therapist-supported interventions that a patient can use at his or her own pace. When this approach is applied to fatigue and/or CFS, minimal interventions might include information about maintaining factors of fatigue, as well as guidance about gradually increasing activity levels, establishing a routine, creating a consistent sleep schedule, and challenging unhelpful thoughts about fatigue.
I have little confidence information they give about maintaining factors of fatigue will be 100% accurate for CFS. Nor have I confidence in their ability to decide which thoughts are helpful and which thoughts are unhelpful
 

Dolphin

Senior Member
Messages
17,567
It was hypothesized that patients would show improvements in their physical functioning after receiving self-help. We were not expecting change in fatigue or social adjustment early in the treatment trajectory as clinical experience suggests there is usually a lag between behaviour change and symptom change.
I would be very suspicious they decided this after seeing the results.
 

Dolphin

Senior Member
Messages
17,567
This is what the material focused on:
The self-help materials were developed by two of the authors, who are clinicians experienced in the treatment of fatigue and chronic fatigue syndrome within a specialist treatment centre for chronic fatigue and CFS. This material was primarily behavioural, focusing on self-monitoring of activity and sleep, gradually increasing activity, setting targets, and reviewing progress with targets. Patients were encouraged to complete sleep and activity diaries for 2 weeks, to set targets related to behaviour change and to plan a programme of activity. Patients were asked to schedule time for breaks and rests as well as physical activities such as walking. They were also encouraged to adjust their activity levels and make them more consistent, with the aim of avoiding a ‘boom and bust’ pattern of activity. Finally, participants were asked to review their own progress with the activity programme and to make changes as necessary.
 

Dolphin

Senior Member
Messages
17,567
More on the therapeutic approach:
Subsequently, patients who went on to treatment had face-to-face CBT which was delivered by cognitive behaviour therapists and clinical psychologists, who were experienced in delivering CBT for CFS. Treatment was based on a cognitive behavioural model of understanding CFS which assumes that unhelpful beliefs and behaviours contribute to the perpetuation of fatigue and disability (Burgess et al., 2012). Specific interventions included self-monitoring, sleep and activity scheduling, goal setting and cognitive restructuring. The CBT treatment and the self-help pack were both based on the same model, but the latter was much briefer and focused more on the behavioural aspects of CBT. It gave patients an introduction to the types of tasks that would be done during CBT treatment.
 

Dolphin

Senior Member
Messages
17,567
Here's some information on the criteria that the participants satisfied. All had to meet the NICE criteria. The study is not that interesting perhaps but this may give an idea of the sorts of people seen in the English clinics:
Participants were aged between 18 and 78 years, with a mean age of 38 (SD 12). Of those who were eligible for inclusion in the analysis, 219 (75%) were female and 75 (25%) were male. Of the eligible patients who responded to self-report questions about CFS diagnostic criteria, 159 (78%) met Oxford criteria for CFS (Sharpe et al., 1991) and 119 (61%) met Centers for Disease Control (CDC) criteria (Fukuda et al., 1994) for CFS.