"Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities" (Wearden '06)

[Tom Kindlon]

ChronicIlln.2006 Jun;2(2):143-53.

Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities.

Wearden AJ1,Chew-Graham C.
Author information

Abstract

Calls for the treatment of chronic fatigue syndrome(CFS) in primary care have been based largely on considerations of the availability and accessibility of resources rather than with reference to a firm evidence base.

Treatments such as cognitive-behavioural therapy and graded exercise therapy, which have proven effective for CFS in secondary and specialist care settings, have not been adequately tested in primary care.

There are several factors that may affect the generalizability of such treatments.

Patients seen in primary care may differ from those seen in secondary care, in terms of both illness beliefs and social characteristics, and these factors need to be taken into account when developing and adapting treatments for primary care.

While some primary care physicians experience difficulties in the diagnosis of CFS, we argue that early and authoritative diagnosis and the provision of a tangible explanation for patients' symptoms are likely to be beneficial.

Because of the scarcity of qualified specialist therapists, we need to train primary care practitioners to deliver treatments, and we need more research into the feasibility and effectiveness of doing this.

Finally, the primary care setting offers opportunities for the guided development of patient self-help approaches.

PMID:
17175657
[PubMed - indexed for MEDLINE]

 

[Tom Kindlon]

Here's a post of mine on this from 2006

---------

I read the full paper "Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities" last night.

I found it depressing e.g. the lack of suggesting other treatment lines or trying to understand the pathophysiology/aetiology of the illness more.

As many people know, Alison Wearden is leading the FINE trial amongst other things. [Aside: For those that don't know, the FINE trial is officially called "Randomised controlled trial of nurse led self-help treatment for primary care patients with chronic fatigue syndrome". It is mainly funded by the (UK's) Medical Research Council (MRC) - their bit is £736,000 = US$1,446,210 = 1,095,990 EURO, with further money coming from the NHS to bring the full cost to over £1,000,000]

The sort of explanations for symptoms that they are talking about to be seen at: http://tinyurl.com/yf2fnc i.e. http://www.kcl.ac.uk/projects/cfs/patients/physiology.html?m=print
[2014: Those links no longer work. It is this article: "Physiological Aspects of CFS" http://www.kcl.ac.uk/innovation/groups/projects/cfs/patients/physiology.aspx ]

The paper certainly doesn't discourage me from trying to help support research that is trying to understand the biology of this illness.

I just marked a few quotes for myself which may or may not be of interest to others.

Tom K.



- "medically unexplained conditions" are mentioned a lot:

"..In order to provide some background information for the general reader, the paper starts with a brief introduction to CFS, its relation to chronic fatigue and other medically unexplained conditions, and its presentation in primary care.."

- About the only reference to biological research:

"..While some patients recall a viral infection at the start of their illness, and while some types of infection are known to predispose towards the development of fatigue syndromes, 18,19 there is no convincing evidence of persistent infection, or indeed of marked immune dysfunction.20 One fairly consistent finding is that patients with CFS suffer from mild hypocortisolism,21–23 but it is difficult to tell whether alterations in the functioning of the hypothalamus–pituitary–adrenal axis can be considered the cause of CFS or are a consequence of the illness.."

-

"..For the purposes of the present discussion paper, we take the view that useful information may be obtained from studies of the treatment of medically unexplained symptoms and syndromes in primary care.."

-

"..We know that there is a continuum of fatigue in the community, and that fatigue is associated with distress.3,31 Some commentators consider that CFS can be understood as the extreme end of the continuum of fatigue, with somewhat arbitrary boundaries drawn between different fatigue states.32.."

The views of those that don't take this view don't seem to be discussed

-

"..MANAGEMENT OF PATIENTS WITH CHRONIC FATIGUE SYNDROME Several different approaches to treatment of CFS have been tried clinically, reflecting the diversity of views about the possible aetiology of CFS and factors contributing to the chronicity of the condition.."

There have been more than "several" approaches tried of course.

- Possibly an interesting quote when discussing what CBT is seen as in relation to CFS:

"..The treatments that have been shown to be most effective in secondary care treatment trials, CBT,42–44 GET45–47 and pragmatic rehabilitation (PR),48 have some features in common. All three treatments are based on a model of CFS that recognizes a role for physiological deconditioning in the experience of symptoms, and all three include a programme of gradually increasing activity levels.."

-

"..It has been shown that for **many** patients, successful treatment with CBT involves changes in beliefs not so much about the initial cause of the illness as about the meaning of ongoing symptoms, so that patients who respond well to treatment no longer interpret symptom fluctuations as evidence of damage to their bodies, and no longer believe that activity is harmful to them.50"

The reference for this is: 50. Powell P, Edwards R, Bentall R. The treatment of wheelchair-bound chronic fatigue syndrome patients: **two case studies** of a pragmatic rehabilitation approach. Behav Cognit Psychother 1999; 27: 249–60.

-their discussion of the crucial "drop out" issue isn't exactly very detailed at least here:

"The absence of a usual treatment control group in both of the above studies makes it difficult to draw firm conclusions about the effectiveness of these treatments for chronic fatigue, and it is still uncertain how the findings would extrapolate to CFS. Rates of drop-out from therapy were greater than those seen in some secondary care trials,43–45 with about one-third of patients dropping out of CBT and counselling, and 40% dropping out of GET. Reasons for drop-out may have been different from those commonly encountered in secondary care. In the CBT v. GET study, 66% of patients were working full-time or part-time, a figure higher than is usually seen in secondary care studies,43 and some patients cited being unable to spare the time for treatment as a reason for withdrawing. Both of the above studies employed specialist therapists to deliver treatments to primary care patients. Such therapists may not routinely be available to most primary care patients."

-

"..The reluctance of some GPs to make a diagnosis of CFS appears to be influenced by the scientific uncertainties surrounding the condition. Some GPs do not want to diagnose a condition that they do not understand, and where they feel that the diagnosis does not lead into an obvious treatment.."

but they don't mention that maybe efforts should be made to try to understand the condition.

- They don't necessarily use it in a good way but thought this was an interesting/useful statistic:

"..patients with CFS suffer from not having a diagnosis or a coherent explanation for their problems, with 90% of patients in one study saying that receiving a diagnosis was the single most helpful event in the course of the illness.68"

68. Broom DH, Woodward RV. Medicalisation reconsidered: toward a collaborative approach to care. Soc Health Illness 1996; 18: 357–78.

- I don't like the reasoning/methods in this quote:

"..The importance of providing an adequate explanation for patients with medically unexplained symptoms has been emphasized in a number of recent studies. Patients are not satisfied with explanations that deny the reality of their symptoms, or that merely collude with their characterization of the problem.72 Patients provided with such explanations may disengage from primary care, and the role of the GP may simply become that of legitimizing absence from work or medical incapacity, or alternatively, the GP may be left to manage what has been termed ‘chronic intractability’, with increasingly negative consequences for the patient and the GP.73,74 However, it is possible for doctors to provide acceptable explanations for patients with CFS and similar conditions. Explanations that provide tangible mechanisms for symptoms, that are linked to patients’ concerns and that imply a management strategy are accepted by patients. Such explanations often link psychological and physiological factors.75 If GPs can provide a timely and authoritative diagnosis for patients with CFS, and can accompany this with a tangible explanation for the patient’s symptoms, some of the problems of conflict between patients and doctors, which have been described on several occasions,17,76 may be avoided.."

- They are happy to believe that GET and CBT have been shown to be effective and don't provide other suggestions:

".. We conclude with a call for more research into the treatment of CFS in primary care — into the adaptation of treatments that have been shown to be effective in secondary care, and particularly into the feasibility of training non-specialist personnel to deliver these treatments. There will be challenges to be overcome if the goal of treating CFS in primary care is to be successfully achieved, but with these challenges come opportunities for primary care to play an important role in the management of this group of patients.."

 

[Esther12]

- I don't like the reasoning/methods in this quote:

"..The importance of providing an adequate explanation for patients with medically unexplained symptoms has been emphasized in a number of recent studies. Patients are not satisfied with explanations that deny the reality of their symptoms, or that merely collude with their characterization of the problem.72 Patients provided with such explanations may disengage from primary care, and the role of the GP may simply become that of legitimizing absence from work or medical incapacity, or alternatively, the GP may be left to manage what has been termed ‘chronic intractability’, with increasingly negative consequences for the patient and the GP.73,74 However, it is possible for doctors to provide acceptable explanations for patients with CFS and similar conditions. Explanations that provide tangible mechanisms for symptoms, that are linked to patients’ concerns and that imply a management strategy are accepted by patients. Such explanations often link psychological and physiological factors.75 If GPs can provide a timely and authoritative diagnosis for patients with CFS, and can accompany this with a tangible explanation for the patient’s symptoms, some of the problems of conflict between patients and doctors, which have been described on several occasions,17,76 may be avoided.."

No.

Provide explanations for patient's symptoms that aren't supported by the evidence and you're a quack. That this sort of approach was (is) taken without informed consent is utterly repulsive.

I'm guessing that reference 73 or 74 is that 'empowering' paper that really showed nothing, but has been used as an excuse for all manner of quackery. It's still shocking how poor a lot of the evidence used to support justifications for asserting authority over the cognitions and behaviours of others are.

 

[Tom Kindlon]

No.

Provide explanations for patient's symptoms that aren't supported by the evidence and you're a quack. That this sort of approach was (is) taken without informed consent is utterly repulsive.

I'm guessing that reference 73 or 74 is that 'empowering' paper that really showed nothing, but has been used as an excuse for all manner of quackery. It's still shocking how poor a lot of the evidence used to support justifications for asserting authority over the cognitions and behaviours of others are.

No.

Provide explanations for patient's symptoms that aren't supported by the evidence and you're a quack. That this sort of approach was (is) taken without informed consent is utterly repulsive.

I'm guessing that reference 73 or 74 is that 'empowering' paper that really showed nothing, but has been used as an excuse for all manner of quackery. It's still shocking how poor a lot of the evidence used to support justifications for asserting authority over the cognitions and behaviours of others are.

References for that extract, FWIW:

17. Banks J, Prior L. Doing things with illness — the micro politics of the CFS clinic. Soc Sci Med 2001; 52: 11–23.

72. Salmon P, Peters S, Stanley I. Patients’ perceptions of medical explanations for somatisation disorders: qualitative analysis. BMJ 1999; 318: 372–5.

73. May C, Allison G, Chapple A, et al. Framing the doctor–patient relationship in chronic illness: a comparative study of general practitioners’ accounts. Sociol Health Illness 2004; 26: 135–58.

74. May C. Chronic illness and intractability: professional– patient interactions in primary care. Chronic Illness 2005; 1: 15–20.

75. Dowrick CF, Ring A, Humphris GM, Salmon P. Normalisation of unexplained symptoms by general practitioners: a functional typology. Br J Gen Pract 2004; 54: 165–70.

76. Deale A, Wessely S. Patients’ perceptions of medical care in chronic fatigue syndrome. Soc Sci Med 2001; 52: 1859–64.

 

[Esther12]

Thanks. I got the number wrong - I was thinking of 72.

The full paper is here:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC27727/

It was a qualitative study and they decided to split approaches up into three types: rejecting, colluding and empowering. Guess which one was best? Cited 251 times.