Fibromyalgia and chronic fatigue syndrome: management issues (Bourke, 2015)

[Dolphin]

Adv Psychosom Med. 2015;34:78-91. doi: 10.1159/000369087. Epub 2015 Mar 30.


Fibromyalgia and chronic fatigue syndrome: management issues.
Bourke J1.

• 1Centre for Psychiatry at The Wolfson Institute for Preventive Medicine, Barts and The London School of Medicine and Dentistry, Queen Mary University of London, UK.

Abstract

Fibromyalgia and chronic fatigue syndrome represent two of the most commonly encountered functional somatic syndromes in clinical practice.

Both have been contentious diagnoses in the past, and this diagnostic dispute has resulted in a therapeutic nihilism that has been of great detriment to their management and to alleviation of the intense suffering and disability that they have caused their innumerable sufferers.

A new age has dawned in terms of a better understanding of these syndromes' physiology and improved approaches to their management.

Here, the diagnosis and management of these closely related disorders are discussed, with particular reference to the recent empirical evidence that has come to light as a consequence of neurophysiological insights and robustly designed randomised clinical trials.

Much work remains to be done in this vein, but we are better placed to facilitate recovery from these disorders than we have been previously.

Whilst remission should always be a goal, complete symptom resolution is not the norm, but 'moderate' improvements are certainly attainable with appropriate management.

PMID: 25832515 [PubMed - indexed for MEDLINE]

From: Balon R, Wise TN (eds): Clinical Challenges in the Biopsychosocial Interface. Update on Psychosomatics for the 21st Century

 

[Dolphin]

Julius Bourke is a psychiatrist who has worked with Peter White on the PACE Trial,
is working with Peter White on a pain study in CFS
and
works in the same place as Peter White.

He also co-authored this with Peter White:

The common link between functional somatic syndromes may be central sensitisation.
Bourke JH, Langford RM, White PD.
J Psychosom Res. 2015 Mar;78(3):228-36.

Looks like he could be Peter White's protégé.

Also, I just searched and:
"He pursued higher training at The Maudsley and King's College Hospitals" (home of Simon Wessely)
and he co-wrote two publications with Simon Wessely (one on Gulf War illness).

 

[Dolphin]

I don't know the Fibromyalgia literature that well so am not in a good position to critique that section of the report. It is mainly about treatments so it's unclear whether it is significant that peripheral findings are not mentioned (e.g. small fibre neuropathy). This author is big into central sensitisation so may have a bias against such findings.

 

[Dolphin]

There remains no definitive test for CFS, and although investigations may be useful for the exclusion of alternative diagnoses, they should be kept to a minimum [73, 74].

73 National Collaborating Centre for Primary Care (Great Britain) Royal College of General Practitioners, Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children. London, England, National Collaborating Centre for Primary Care, Royal College of General Practitioners, 2007.
74 Fukuda K, Straus SE, Hickie I, et al: The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994; 121: 953–959.

 

[Dolphin]

Definitive treatment of the disorder remains elusive, and to date, the best responses have been demonstrated with cognitive and behavioural interventions [69], which are more likely to result in recovery than other approaches [70]. Rather than reflecting treatment of a disorder of ‘the mind’, the benefits of these treatments may be related to a positive alteration at the neurophysiological level. Precisely what this change is, or where it occurs, remains unclear.

69 White PD, Goldsmith KA, Johnson AL, et al: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011; 377: 823–836.
70 White PD, Goldsmith K, Johnson AL, et al: Recovery from chronic fatigue syndrome after treatments given in the PACE trial. Psychol Med 2013; 43: 2227– 2235.

The definition of recovery in ref. 70 was rubbish (very lax).

 

[Dolphin]

Sleep.

CFS patients may overestimate sleep disturbance [78]. However, subtle disruptions may partially explain fatigue and pain, possibly in relation to abnormal sympathetic tone [63]. It has also been suggested that a delayed circadian rhythm may contribute to the symptoms of CFS [79]. In addition, delayed sleep phase disorder may be an important differential diagnosis in some instances

78 Majer M, Jones JF, Unger ER, et al: Perception versus polysomnographic assessment of sleep in CFS and non-fatigued control subjects: results from a population-based study. BMC Neurol 2007; 7: 40.

Reference 78 is an "empiric" criteria (Reeves et al., 2005) study i.e. most probably didn't have CFS.

 

[Dolphin]

Depression and Anxiety.

As in fibromyalgia, depression and anxiety are common comorbidities in CFS. There is an overlap between CFS and MDD [89]and a high lifetime prevalence of MDD in CFS patients [90].

90 Nater UM, Lin JM, Maloney EM, et al: Psychiatric comorbidity in persons with chronic fatigue syndrome identified from the Georgia population. Psychosom Med 2009; 71: 557–565.

MDD = Major Depressive Disorder.

Ref. 90 is an empiric criteria study (Reeves et al., 2005).

Jason et al. found that 38% of the patients who had MDD satisfied the criteria for CFS

Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition

Leonard A. Jason

DePaul University, Chicago, Illinois, Ljason@depaul.edu

Natasha Najar

DePaul University, Chicago, Illinois

Nicole Porter

DePaul University, Chicago, Illinois

Christy Reh

DePaul University, Chicago, Illinois

Abstract

The Centers for Disease Control and Prevention (CDC) recently developed an empirical case definition that specifies criteria and instruments to diagnose chronic fatigue syndrome (CFS) in order to bring more methodological rigor to the current CFS case definition. The present study investigated this new definition with 27 participants with a diagnosis of CFS and 37 participants with a diagnosis of a Major Depressive Disorder. Participants completed questionnaires measuring disability, fatigue, and symptoms. Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition. Given the CDC’s stature and respect in the scientific world, this new definition might be widely used by investigators and clinicians. This might result in the erroneous inclusion of people with primary psychiatric conditions in CFS samples, with detrimental consequences for the interpretation of epidemiologic, etiologic, and treatment efficacy findings for people with CFS.

Lots of people quote these empiric criteria studies: not just something Julius Bourke does. And it's not always clear the empiric criteria were used to those that don't know where to look.

 

[Dolphin]

The presence of these comorbidities must also be taken into account in the course of psychological interventions, as the cognitions and behaviours thought to perpetuate CFS differ in patients with concomitant anxiety and depressive disorders and as interventions need to be tailored accordingly [91].

91 Cella M, White PD, Sharpe M, et al: Cognitions, behaviours and co-morbid psychiatric diagnoses in patients with chronic fatigue syndrome. Psychol Med 2013; 43: 375–380.

So he thinks the cognitions and behaviours White, Shape and others claim perpetuate CFS do perpetuate the condition.

 

[Dolphin]

Immunomodulation.
Hydrocortisone, fludrocortisone, and antiviral therapies have all been trialled in small samples and poorly designed studies, so there is currently no evidence to support their use [97–99].

97 Cleare AJ, Miell J, Heap E, et al: Hypothalamo-pituitary-adrenal axis dysfunction in chronic fatigue syndrome, and the effects of low-dose hydrocortisone therapy. J Clin Endocrinol Metab 2001; 86: 3545–3554.

98 Kogelnik AM, Loomis K, Hoegh-Petersen M, et al: Use of valganciclovir in patients with elevated antibody titers against Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were experiencing central nervous system dysfunction including long-standing fatigue. J Clin Virol 2006; 37(suppl 1): S33–S38.

99 Blockmans D, Persoons P, Van Houdenhove B, et al: Combination therapy with hydrocortisone and fludrocortisone does not improve symptoms in chronic fatigue syndrome: a randomized, placebo-controlled, double-blind, crossover study. Am J Med 2003; 114: 736–741.

What's going on!? A CBT school of thought psychiatrist is criticising a study done by other CBT school psychiatrists (Cleare et al.)? Oh, it's criticising a study that found a non-psychiatric drug might be useful ...

 

[Dolphin]

Staphylococcus toxoid was used in one study and demonstrated small clinical improvements, providing that it was not discontinued [100]. The authors suggest that the benefit reported stemmed from invigoration of a hypoactive immune system. Its use is not currently recommended.

The author doesn't give a reason for the last sentence.

 

[Dolphin]

Psychoeducation.

Psychoeducation was assessed in CFS in a trial of ‘pragmatic rehabilitation’. This involved the psychoeducation of CFS patients by a specialist nurse and the formulation an agreedupon plan of gradually increasing activity [101]. It is not yet clear whether the efficacy of this approach alone can be sustained.

101 Wearden AJ, Dowrick C, Chew-Graham C, et al: Nurse led, home based self help treatment for patients in primary care with chronic fatigue syndrome: randomised controlled trial. BMJ 2010; 340:c1777.

So he doesn't tell the readers the real results of this trial that cost around £1.4 million of UK taxpayers' money:

Immediately after treatment (at 20 weeks), patients allocated to pragmatic rehabilitation (n=95) had significantly improved fatigue (effect estimate -1.18, 95% confidence interval -2.18 to -0.18; P=0.021) but not physical functioning (-0.18, 95% CI -5.88 to +5.52; P=0.950) compared with patients allocated to treatment as usual (n=100). At one year after finishing treatment (70 weeks), there were no statistically significant differences in fatigue or physical functioning between patients allocated to pragmatic rehabilitation and those on treatment as usual (-1.00, 95% CI -2.10 to +0.11; P=0.076 and +2.57, 95% CI 3.90 to +9.03; P=0.435).

 

[Dolphin]

In addition to the benefits demonstrated by the primary outcome measures of the PACE trial, the delivery of CBT in this model was also demonstrated as being effective in the reduction of joint and muscle pain in a secondary analysis [102].

Simon summarised the results in this table:

(from: http://phoenixrising.me/archives/18648 )

 

[Dolphin]

(Discussing the PACE Trial)

The outcomes examined were treatment effects not only on fatigue but also on the additional domains of work and social adjustment, depression, anxiety, and post-exertional malaise.

Only positive results are subsequently discussed regarding the PACE Trial. Readers might thus believe that there were improvements with employment.

 

[Dolphin]

Outcome
One of the most important findings in recent years is the confirmation that recovery from CFS is possible [70]. The importance here is in alleviating the adverse effects that have arisen within a culture of therapeutic nihilism. Patients attending National Health Service specialist centres in the UK can expect similar improvements in fatigue, anxiety, and depression to those in the PACE trial [111]. However, service delivery in the real world seems less able to deliver the same improvements in physical function. It is uncertain as to whether this is due to differences in the delivery or content of the treatments offered [111]. Recovery, as defined in the PACE trial by the Chalder Fatigue Questionnaire, the 36-Item Short-Form Health Survey, and case definition (based on the CDC and Oxford criteria) 52 weeks after initial randomisation, is most likely with CBT and GET [70]. However, the effect sizes of these nonpharmacological treatments are moderate, and the interventions rarely lead to complete resolution. Predictors of a poorer response to treatment include poor social adjustment, strong beliefs in an organic cause for fatigue, and current receipt of benefits [112, 113].

The recovery criteria in the PACE Trial, as mentioned above, were very lax and rubbish.

None of the factors in the last sentence mention that the therapy could be the problem: instead the problem of a poor response is all put on the patient.

 

[Dolphin]

Summary

Fibromyalgia and CFS are debilitating conditions that remain poorly understood. Although similar clinical entities, their differential response to pharmacological treatment might suggest that they are separable on a physiological basis, but they are again drawn together by their response to cognitive and behavioural interventions. Whilst remission should always be a goal, complete symptom resolution is not the norm, but ‘moderate’ improvements are certainly attainable with appropriate management.

I don't believe "remission should always be a goal" with CBT and GET: it's not realistic.

 

[Denise]

@Dolphin thank you for breaking this down and for critiquing it.
Much appreciated!

 

[SOC]

This is another name that needs to go on our list of "researchers" to give to the media when the details of the physiology of ME are known. The media will love the horror stories of people who treated sick people so dreadfully in order to serve their own egos and pockets.... as long as we don't let it all get swept under the rug.

 

[barbc56]

I'm exhausted just from liking all of these posts by @Dolphin. I'm sure I missed some.

Too bad we don't have a like button for an entire thread. However, there are probably very few threads that would fit into this category.

Thanks again!

Barb

 

[Effi]

What's going on!? A CBT school of thought psychiatrist is criticising a study done by other CBT school psychiatrists (Cleare et al.)? Oh, it's criticising a study that found a non-psychiatric drug might be useful ...

just FIY these guys:

99 Blockmans D, Persoons P, Van Houdenhove B, et al:

are also very heavily BPS/psychosomatic. It's funny how they keep using each other's studies to prove what they already 'know'. And it's still called science...

 

[A.B.]

Another confused Wessely school believer that doesn't live in reality. Let's try to translate these weasel words:

Both have been contentious diagnoses in the past, and this diagnostic dispute has resulted in a therapeutic nihilism that has been of great detriment to their management and to alleviation of the intense suffering and disability that they have caused their innumerable sufferers.

Translation: the diagnoses were controversial in the past, but are no longer controversial. Patient's lack of faith in treatment isn't because the therapy is ineffective but because there is debate about whether this is a physical or mental illness. The therapy is really effective but the debate prevents patients from getting well.

A new age has dawned in terms of a better understanding of these syndromes' physiology and improved approaches to their management.

Translation: we have it all figured out.

Here, the diagnosis and management of these closely related disorders are discussed, with particular reference to the recent empirical evidence that has come to light as a consequence of neurophysiological insights and robustly designed randomised clinical trials.

Translation: the PACE trial is robust scientific evidence.