CBT for Chronic Fatigue Syndrome (CFS) - Psychology tools.com

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Psychology Tools Limited
32 Queens Road
Reading
RG1 7AU
United Kingdom

Chronic fatigue syndrome (CFS) is also often referred to as M.E. which stands for myalgic encephalomyelitis. CFS is characterised by extreme fatigue, post-exertional malaise, and feeling generally unwell.

The causes for CFS are not fully understood and possible causes include viral infections, immune disturbances, or disturbances to the central nervous system.

As with any human experience CFS has a psychological component, which means that psychological techniques can form part of a treatment package for CFS.

Currently recognised interventions for CFS include cognitive behavioral therapy (CBT), pacing and graded activity, and graded exercise therapy.
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Treatment guides
The PACE trial was a large-scale study comparing CBT, graded exercise therapy (GET), and standard medical care for CFS. It found that CBT and GET were more effective for CFS than standard care alone.

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Downloads include:

Behavioral Experiment Worksheet
"Behavioral experiments allow individuals to test the validity of their beliefs and assumptions. They are a core experiential technique for therapeutic change in cognitive behavioral therapy (CBT). This CBT worksheet helps you to plan and carry out effective behavioral experiments."

Unhelpful Thinking Styles & Errors Worksheet (Cognitive Distortions)
"Human beings are prone to thinking in biased ways, particularly at times when we are under stress or feeling strong emotions. Aaron Beck, the founder of cognitive behavioral therapy (CBT) identified a set of what he called ‘cognitive distortions’ – common ways in which our thinking can become biased or inaccurate. This list was later clarified by David Burns and described using the more approachable label of Unhelpful Thinking Styles. This CBT worksheet describes ten common unhelpful thinking styles which clients may find helpful as part of cognitive restructuring exercises in CBT."

Health Anxiety Thought Record
"Individuals with health anxiety experience clinically significant distress associated with health concerns. This thought-challenging record enables clients to address negative automatic thoughts, worries, and predictions associated with their health."

Safety Behaviors
"Safety behaviors are actions carried out with the intention of preventing a feared catastrophe. In the short-term they often give a sense of relief, but in the long-term they prove unhelpful because they act as a barrier to new learning. This CBT worksheet provides a clear and comprehensive explanation of safety behaviors and enables clients to have a strong understanding of the causes and consequences of safety behaviors so that they can be experimented with and relinquished."

https://www.psychologytools.com/professional/problems/chronic-fatigue-syndrome/


the cbt brigade are really upping the ante


 
Some forms of chronic pain and fatigue are thought to be maintained by ‘boom and bust’ patterns of activity – the individual will be active when they are feeling well but will often ‘overdo’ it, leading once again to high levels of pain or fatigue. Pacing is a technique whereby activity is increased from a low baseline in a controlled manner – the idea is to make activity more consitent and less dependent upon how the individual is feeling.
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They are describing graded exercise therapy.

They also don't distinguish between pacing for chronic pain and pacing for ME/CFS. The references listed are all for chronic pain, but the description refers to GET.

Pacing is an evidence-based approach to increasing activity and fitness, and in reducing overall pain and fatigue. It is designed to prevent ‘boom and bust’ patterns of activity.
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Unfortunately the evidence shows a lack of effect on activity levels and fitness. I don't remember seeing any evidence that it prevents boom and bust patterns of activity either.
 
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I've been looking at who runs Psychology tools. It's a one man band by a psychotherapist who has worked for the NHS and is now in private practice. His specialist areas are trauma, panic and PTSD. No mention of ME/CFS experience.

I think an e-mail to him pointing out that PACE has been debunked would be a good idea. I might have a go. If so I'll put a draft here. Even better, someone else do it!

https://www.psychologytools.com/about/
 
Edit: Letter now sent.

Dr Matthew Whalley
Psychology Tools

Dear Dr Whalley,

I see on your website you provide materials from the PACE trial and say that CBT and GET are evidence based therapies for ME/CFS. As a therapist specialising in a different area of psychology, you may not be aware of recent developments regarding the PACE trial in particular, and the use of CBT/GET for ME/CFS.

The ME/CFS NICE guidelines are currently under review. One of the main reasons for this is that there is increasing evidence that PACE and the other trials of CBT/GET for ME do not after all show these treatments to be effective. The PACE data has been re-analysed according to the trial investigators own pre-specified protocol and the treatments found to be not clinically effective. [1]

In a recent rebuttal to this reanalysis the authors admitted they moved the outcome measures to fit their preconceptions about effectiveness. This not good scientific practice. [2]

There is no evidence from objective measures that the treatments are effective, and the PACE trial itself found no between group differences at long term follow up.

The Cochrane review of exercise treatments for CFS has been challenged and is awaiting re-writing.

A recent large survey carried out on behalf of the NICE guidelines committee found that the vast majority of patients who underwent NHS CBT/GET for ME/CFS had no change or were made worse by the treatments. International bodies are removing CBT/GET from their guidelines. [3]

It is therefore concerning that your website continues to provide materials for CBT/GET approaches to treatment of ME/CFS and makes claims that these are effective treatments, and carries no warnings that the majority of patients with ME/CFS are made worse by GET.

You and the users of your website will find it illuminating to watch this 11 minute medical training video:
Diagnosing and Managing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome.

I await your reply with interest. I am happy to provide further information and evidence or discuss this serious matter further. I am sure you would not want to be inadvertently promoting un-evidenced and potentially harmful material.

I have made this letter public, and give you due warning that I will make your reply, or lack of one, public in the same forum.
CBT for Chronic Fatigue Syndrome (CFS) - Psychology tools.com

References:

[1] Rethinking the treatment of chronic fatigue syndrome—a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT, 2018, Wilshire et al.

[2] Response: Sharpe, Goldsmith and Chalder fail to restore confidence in the PACE trial findings, 2019, Wilshire and Kindlon

[3] Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS, 2019

EDITED: I have now sent the letter as an e-mail. I'll update if I receive a reply,
 
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Is this even legal? When you look at the "Treatment Guides" section, the "archived copy" links take you straight Wayback Machine copies of ... the PACE manuals!!! (The other links are broken QMUL ones). What's more I'm not certain these were the final versions of the manuals, being Nov 2004.

Surely any manuals produced for use in the context of a clinical trial should not legally/ethically be presumed valid for normal clinical usage, especially if potentially being used as self-help aids? I don't think the wriggly disclaimer on the web page can exempt them from that. Even if the trial had been perfect, that limitation would still have to apply surely? The differences between a clinical trial and normal clinical practice must surely be so different in terms of the manuals.

Feels to my like a valid complaint could be made to whoever oversees such organisations.
 
Barry said:
Surely any manuals produced for use in the context of a clinical trial should not legally/ethically be presumed valid for normal clinical usage
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The formal NHS training for GPs is based on the failed FINE trial (the one that says "there is no disease" and concluded no useful benefit). It is highly unethical and immoral but that hasn't stopped anyone yet. If the NHS can do that, no reason why others wouldn't. After all they can even point to the NHS and say it's been validated.

Ideology makes ethics very malleable.
 
rvallee said:
The formal NHS training for GPs is based on the failed FINE trial (the one that says "there is no disease" and concluded no useful benefit). It is highly unethical and immoral but that hasn't stopped anyone yet. If the NHS can do that, no reason why others wouldn't. After all they can even point to the NHS and say it's been validated.

Ideology makes ethics very malleable.
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That is not the point I'm making. The PACE manuals, be they participants or therapists ones, were written for the purpose of running the trial - they were NOT written for use in normal clinical practice. I know I'm not an expert here, but I would be amazed if manuals written for this purpose are also valid for use as in normal clinical practice. Akin to test pilots' manuals for commercial aircraft type xyz, being also provided for commercial airline pilots to use when flying aircraft xyz. The requirements are enormously different, and I would sincerely hope some law, code, guideline, whatever would be broken if attempting to do so. It's grievously wrong surely. It would be wrong even if the manuals were written for the best ever run trial in the world.

@Jonathan Edwards ?
 
Barry said:
The requirements are enormously different
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This is a complicated issue. Conditions in trials are different and in principle I agree with what you are saying. However, clinical guidelines can only be based on what the protocol was for the trial that shows the treatment was effective. So doses of drugs in guidelines must be those used in a trial etc.

I think if it is assumed that PACE showed these treatments to be effective then guidelines would need to quote the trial protocols.
 
could it be possible, to get from psychology / psychiatry statistics regarding their successes and treatments

psychiatric hospitalization per decade, e.g. 1950 -1960, 1960 - 1970 ....

- how many ppl went into psychiatric facilities
- how many ppl were released as "healed" / functional ...
- otherwise - outcome and improvement reached
- stay per patient in days until release / death
- average cost per patient / day

- what were the 10 most diagnosed diseases
- what were the 10 most prescribed pills
- average number of pills per patient per day
- how many patients showed serious side effects in %
- medication (top 10) with serious adverse effects

- how many patients additionally treated for diseases in hospital, during stay


- %age of patients that during or 24 months after treatment
----- commited suicide
----- a crime
----- died

or do those statistics exist... ?
yeah can be faked ... but nevertheless...
 
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Trish said:
I've been looking at who runs Psychology tools. It's a one man band by a psychotherapist who has worked for the NHS and is now in private practice. His specialist areas are trauma, panic and PTSD. No mention of ME/CFS experience.

I think an e-mail to him pointing out that PACE has been debunked would be a good idea. I might have a go. If so I'll put a draft here. Even better, someone else do it!

https://www.psychologytools.com/about/
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He says he is a clinical psychologist, not a psychotherapist. These are very different professions.
 
didn't spot this the first time I looked at this site

The Science Media Centre states that “CFS/ME is highly controversial with longstanding disagreements between the mainstream medical community and campaigners about its cause and treatment” (Science Media Centre, 2018). Treatments currently recognized by the UK’s National Institute for Health and Care Excellence (NICE) include cognitive behavioral therapy (CBT), pacing and graded activity, and graded exercise therapy.
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Psychological Model and Theory of CFS/ME
Understanding of the causes and maintenance of CFS/ME is incomplete. Biomedical factors likely play a role. Like any physical illness it is normal to have thoughts and feelings about symptoms and what they mean, and so psychological approaches also have potential clinical value. Models of CFS/ME including psychological factors include:

  • Browne and Chalder (2006)
  • Burgess and Chalder (2004)
  • Vercoulen et al. (1998)
  • Harvey and Wessely (2009)
  • Roche, Dawson, Moghaddam, Abey, and Gresswell (2017)
  • Wiborg, Knoop, Frank, and Bleijenberg (2012)
References
Browne, T., & Chalder, T. (2006). Chronic fatigue syndrome. Psychiatry, 5(2), 48–51.

Burgess, M., & Chalder, T. (2004). Cognitive behaviourtherapy for CFS/ME: PACE manual for participants. MREC v. 2. Retrieved from: https://me-pedia.org/images/7/7a/PACE-cbt-participant-manual.pdf

Harvey, S. B., & Wessely, S. (2009). Chronic fatigue syndrome: Identifying zebras amongst the horses. BMC Medicine, 7(1), 58. https://doi.org/10.1186/1741-7015-7-58

Roche, L., Dawson, D. L., Moghaddam, N. G., Abey, A., & Gresswell, D. M. (2017). An Acceptance and Commitment Therapy (ACT) intervention for Chronic Fatigue Syndrome (CFS): A case series approach. Journal of Contextual Behavioral Science, 6(2), 178–186.

Science Media Centre (2018). Science Media Centre Factsheet: CFS/ME—The illness and the controversy. Retrieved from: http://www.sciencemediacentre.org/w.../03/Science-Media-Centre-Factsheet-CFS-ME.pdf

Vercoulen, J. H. M. M., Swanink, C. M. A., Galama, J. M. D., Fennis, J. F. M., Jongen, P. J. H., Hommes, O. R., van der Meer, J. W., & Bleijenberg, G. (1998). The persistence of fatigue in chronic fatigue syndrome and multiple sclerosis: Development of a model. Journal of Psychosomatic Research, 45(6), 507–517.

Wiborg, J. F., Knoop, H., Frank, L. E., & Bleijenberg, G. (2012). Towards an evidence-based treatment model for cognitive behavioral interventions focusing on chronic fatigue syndrome. Journal of Psychosomatic Research, 72(5), 399–404.
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https://www.psychologytools.com/professional/problems/chronic-fatigue-syndrome/

ironic that the second reference is from ME-pedia.
 
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