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3.5 Failure to highlight data on the most severely ill patients
At several points, the report mentions the problems of the most severely ill patients:
"Severely ill are severely overlooked; just ignored and invisible." (2.3.1)
"In general, this group is excluded from research, so they may not fulfil criteria used to test evidence-based approaches. Some report that they want to believe doctors and feel `frightened to say no' or that they do not have the energy to disagree. Fears were also expressed over: being branded as a `difficult patient', losing benefits, letting people down, not trying, losing the love of the family, and being labelled as mentally ill." (2.3.1.1)
"Not enough is known about severe forms of the condition CFS/ME that are reported to affect up to 25% of patients." (4.4.1)
Yet, a database of information collected and analysed on behalf of severely-ill sufferers by the 25% ME Group, which was presented to the Working Group, has not been used to full effect, and remains unmentioned in Annexe 3 (Patient Evidence).
MERGE takes the opportunity of highlighting it in Table 2 below.
The 25% group, in a questionnaire report (25% ME Group, 2000), revealed that of 215 questionnaires returned some interesting observations could be made: 55% of respondents had been ill for more than ten years, and 50% of them had taken more than two years to obtain a formal diagnosis of CFS/ME. Twenty-five percent of respondents described themselves as bedridden, and 57% had been either housebound or bedridden for more than six years. As regards appropriate medical advice or treatment, 29% reported that none had been offered during the course of their illness. Only 25% of respondents felt that their condition was improving, or had improved from an even more chronic level. Important additional findings were that 76% (162/212) of respondents felt that the lack of a diagnosis or appropriate advice in the early stages of their illness had impacted on the severity and longevity of their symptoms; that 38% (81/212) described themselves as totally dependent on others; and that 48% (104/215) reported no regular assessment or management of their condition. The management strategies recommended by the report are inappropriate for this group of sufferers, whose continued ill health - its aetiology, perpetuation and cure - remains a neglected challenge.
Table 2. Survey of severely affected CFS patients, reproduced courtesy of the 25% group
Age (years) | Number (%) | |
<20 | 5 (3) | |
20-39 | 70 (36) | |
40-59 | 90 (47) | |
>60 | 28 (14) | |
Years Housebound/bedridden | ||
Years | Number housebound (%) | Number bedridden (%) |
<2 | 10 (5) | 10 (5) |
2-5 | 49 (24) | 19 (9) |
6-10 | 59 (29) | 16 (8) |
>10 | 35 (17) | 35 (17) |
Present Condition | ||
improved/improving | 53 (25) | |
stable low level functioning | 105 (49) | |
slowly deteriorating | 56 (26) | |
Duration of illness (years) | ||
Duration (years) | Number (%) | |
2-5 | 31 (14) | |
6-10 | 66 (31) | |
10-14 | 49 (23)/td> | |
>15 | 68 (32) | |
Illness onset | ||
sudden | 104 (49) | |
gradual | 110 (51) | |
Time to formal diagnosis (months) | ||
<12 | 76 (36) | |
13-24 | 28 (13) | |
25-60 | 53 (25) | |
>60 | 53 (25) | |
Time to appropriate advice/treatment(months) | ||
<12 | 66 (32) | |
13-24 | 14 (7) | |
25-60 | 40 (20) | |
>60 | 24 (12) | |
none given | 60 (29) |
3.6 Undue prominence given to the `biopsychosocial' model of the illness
From the report of the first recorded outbreak in 1934 until the late 1980s, the emphasis was on the elucidation and treatment of the biomedical aspects of the illness (e.g., Acheson, 1959). Since then, a "biopsychosocial model" has been proposed - primarily by psychiatric/psychological professionals - defined by the report as:
"The biopsychosocial model of pathophysiology, applicable to all disease, suggests that once an illness has started its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process." (3.3.4)
"Illness beliefs - The way in which abnormal illness behaviour and illness attributions (especially about cause) may be perpetuating ill health and disability in some CFS/ME patients remains a contentious issue." (3.3.3)
Psychological factors do, of course, accompany chronic illness - every patient has a mind and feelings which are affected by the experience of disease. The problem concerns the ascription of causation. The view that "psychosocial factors" either precede (cause?) CFS/ME, or play a major role in maintaining the illness after it has developed, has taken root among some, but not all, members of the medical profession, and has influenced the perception of CFS/ME in the media and among the general public. Naturally, patients have come to feel stigmatised and alienated, and perceive the influence of the model, particularly among medical practitioners, to have a pernicious effect on their care. To complicate matters, patients' beliefs that their illness is "physical" are seen by proponents of the biopsychosocial model as a sign of psychological dysfunction. Such psychologising of patients illness experience is not unique to CFS/ME patients. A recent study on Gulf War Syndrome was entitled: "Prevalence of Gulf war veterans who believe they have Gulf war syndrome" (Chalder et al, 2001). The principal author of this study was one of the Key Group members of the report. Many CFS/ME patients await with interest the next study in the series: to continue the analogy of the amputee used above, it could perhaps be on amputees (with or without CFS/ME) who believe that they have lost a limb. The CMO report itself - in select sections possibly written to assuage its lay members - does state the central problem with this model succinctly:
"Although they may have speculated about causation, mostly what has been demonstrated is an association. For example, the various psychological factors claimed to be causal may be a consequence of severe, prolonged CFS/ME." (4.2.1.4)
"Certain strongly held attitudes to the illness and coping mechanisms do seem to be associated with a poorer prognosis, but studies done so far have not enabled the direction of causation to be determined. Some have inferred that a poorer prognosis may be caused by such attitudes, but it can equally be argued that severe, prolonged illness may have a negative impact on attitudes and coping mechanisms... the various psychological factors claimed to be causal may be a consequence of severe, prolonged CFS/ME, and for the most part the study designs adopted would not enable the question of causality to be resolved." (4.2.1.4)
"However, it seems likely that cognitive dysfunction in CFS/ME cannot be explained solely by the presence of a coexistent psychiatric disorder." (3.3.4)
"The biopsychosocial model of CFS/ME has influenced its perception among the general public."
Nevertheless, peppered throughout the remainder of the report are examples of classical biopsychosocial model-ism, despite the resignation of its supporters from the Key Group on the grounds that "the condition's psychological aspects were being underplayed" (Hospital Doctor, 17th Jan 2002). Thus, "An individual's symptom profile is modified by the impact of illness on the person affected and those around them." (3.4.2)
"Re-enablement should encompass cognitive, emotional, and social aspects as well as physical aspects." (4.1.2)
"Ideally, services would be patient-centred, and adopt a biopsychosocial model or a holistic view of care." (3.3.4)
"It is thought that certain strongly held beliefs about the cause of the illness can impede progress. These include the view that the illness is entirely physical or is caused by a persistent virus. These beliefs could be partially correct - e.g., a virus could have provoked a persistent or prolonged change in physical functioning. However, they could also act as obstacles to recovery or to necessary treatment." (3.3.3)
Given that the evidence of efficacy for these interventions in CFS/ME sufferers is weak (Whiting et al, 2001), the relevance of these statements in the Working Group report is questionable. Why should the "ideal" service (which patients and their carers are paying for through their taxes) be one which adopts a biopsychosocial model, given the available evidence? More generally, how would it be if the same statements were applied to either asthma or angina, both of which have psychosocial elements yet are recognised as predominantly physical illnesses? As Susan Sontag says in her book, Illness as Metaphor (1978), "Theories that diseases are caused by mental states and can be cured by will power are always an index of how much is not understood about the physical terrain of a disease." Some consider this insight to be particularly apt in the case of CFS/ME at the beginning of the 21st century.
3.7 Downgrading of relevant research findings
At points the Working Group's report mentions its role in assessing research evidence: "...we sought to bring together knowledge on CFS/ME to support initiatives to improve care for patients. This has been an intricate process, drawing on research evidence, the experience of patients and diverse clinical opinion." (Foreword) "... make recommendations for further research into the care and treatment of people with CFS/ME." (Remit, 1.1)
Yet, despite this, the main body of the CMO report deals with the research findings in 639 words (section 3.3.4) out of a total of some 34,600 in the main report. However, there is a large body of research literature on CFS/ME. As the CFIDS Association of America makes clear, though the aetiology of the illness remains elusive, numerous biological abnormalities have been reported in:
- Immune function - in the form of cytokine overproduction or poor cellular function (Patarca-Montero et al, 2000; Patarca-Montero et al, 2001).
- Brain and CNS - with possible involvement of the basal ganglia (Chaudhuri & Behan, 2000) or the functioning of the blood-brain barrier (Bested et al, 2001).
- Muscle - in the form of oxidation defects (McCully & Natelson, 1999) or post-exertional deficits (e.g., Lane, 2000; Paul et al, 1999).
- Autonomic functioning - as neurally-mediated hypotension (e.g., Bou-Holaigah et al, 1995).
- Hormonal function - most prominently at the hypothalamic-pituitary-adrenal axis (e.g., Scott & Dinan, 1999).
- Cardiovascular integrity - endothelial sensitivity to acetylcholine (e.g., Spence et al, 2000).
- Neuropsychological functioning - including impaired working memory and information processing unrelated to psychiatric illness (review: Michiels & Cluydts, 2001).
"The research literature contains several hypotheses and proposals to explain how CFS/ME may be caused or maintained. The quality of the evidence is variable, however, and many suggested mechanisms are as yet based on associations rather than cause or linkages." (3.3.4)
Interestingly, these reasons for bypassing a full consideration of the research evidence, namely, the variable quality and lack of causal evidence, could also apply to the evidence for the choice of management strategies (cognitive behavioural therapy, graded exercise therapy, and pacing) and, it could be plausibly argued, to the biopsychosocial model itself.
The downplaying of the research evidence partly reflects the constrained remit, which was restricted to management strategies. With a different remit, the report might have been able to recommend a direction for future fundamental research after a thorough review of the literature. Instead, the message presented to the media, the public and opinion formers is that the best that can be done is to manage symptoms, most prominently with psychological strategies.
3.8 Inadequate coverage of social care and welfare issues
The foreword to the report states that: "In 1998, the Working Group on CFS/ME set out to consider how the NHS might best provide care for people of all ages who have this complex illness."
While the NHS is the major player in care provision for patients, it is only one agency among many providing care for people. By focusing so closely on one agency, the CMO report has missed an opportunity to highlight more clearly the responsibilities to CFS/ME patients of other agencies and the professionals who work for them. The nature of the illness and its practical consequences, particularly for the severest sufferers, are such that social services should be closely involved in both care planning and direct service provision. Consideration should be given to those most severely affected, identifying them as a special interest group in terms of joint community care planning and in planning for children and young people's services.
"The report's message is that the best that can be done is to manage symptoms."
The report recognises that, on the ground at present, the range of services are not `joined up'.
"Beyond primary care level, the issue that causes most concern is the lack of specialists and services... Some patients find themselves in geographical `black holes' that lack specialist provision." (2.2.4)
"Patients can encounter arbitrary and poorly informed decision-making on other issues such as home help and mobility badge schemes, as well as sheer resource limitation. Failure to access appropriate support from social services can be compounded if doctors fail to provide clear guidance about diagnosis and need." (3.5.1)
While the recommendations on equipment and practical assistance (4.3.3) and the call for service networks (6.3) is welcome, statements about the services CFS/ME sufferers `should' receive in the community are little more than howling for the moon: without the full support and practical backing of local social work departments, sufferers will struggle to see these needs either fully met or met appropriately. For example, a recommendation that clinicians should inform patients about local services is one thing, but providing clinicians with the ability to refer patients to the relevant agencies themselves would be truly useful. Indeed, with the advent of joint social work/health teams, this is no longer impractical. As regards recommendations to employers - even the NHS itself - the Working Group's report is light on the provision of practical advice about how the illness should be managed in the workplace. A fuller exploration of this issue would have been a welcome extension to the report, as would advice on good employment practice to all tax-funded employers.
It is re-assuring to see that Welfare Benefits have been accorded their own priority by the Working Group:
"A small subgroup of the Working Group was established to produce a paper on CFS/ME and the benefits system. This working paper was then submitted to the CMO in April 2000. Professor Donaldson formally copied the paper to the Chief Medical Advisor of the Department of Social Security to inform that Department's Working Group, which was established to review the benefits system for people with chronic illness." (1.3)
Yet, how useful it would have been, for patients and carers, to have had this information summarised in the main report, and attached in full as another Appendix.
The journey through public service provision is often a daunting one that can leave individuals feeling powerless and damaged by the very system that is supposed to support them. The experiences of patients in the health service, service users in local authorities, and claimants in the welfare benefits system, continually highlight the need for more independent advocacy services to ensure that people receive the services and support to which they are entitled, and to receive them with their dignity intact. Unfortunately, the Working Group report barely addresses these issues.
3.9 Words are not action - will anything actually change?
Though the CMO report makes some heroic suggestions for improving the quality of the patient-provider interaction, insisting that "Patients can be empowered to act as partners in care" (4.0), it carries with it no executive power, no funding to stimulate change, and no commitment to reconvene at a future date to report on the changes which may have been implemented. This severely limits its usefulness.
Given this, several aspects of the situation on the ground make significant beneficial change unlikely in the short to medium term. First, a significant number of patients have not been well served by healthcare professionals. For example, section 3.5 (above) has shown that 61% of the most severely ill patients report waiting more than 2 years for appropriate advice and symptomatic help (there is no `treatment'). Although the Working Group is, in places, upbeat about the prognosis for patients with the illness, e.g., "The likelihood is that most patients will show some degree of improvement over time, especially with treatment... Gradually progressive deterioration is unusual in CFS/ME." (1.4.3), research studies on prognosis (e.g., Bombardier & Buchwald, 1995; Hines et al, 1993; Vercoulen et al, 1996) are less optimistic: around one third of sufferers regain up to 80% of their premorbid levels, but the remainder experience remissions and relapses, albeit at a `stable' level of functioning, often for years, or steadily deteriorate into severe incapacity and dependency.
"The report carries no executive power, funding, or commitment to follow up its recommendations."
This often occurs without any support or significant help from healthcare professionals: without teeth, the recommendations of the Working Group are unlikely to alter this unfortunate picture. Again, research reports have shown that a substantial roportion of GPs do not believe they are dealing with a distinct clinical entity when they see CFS/ME patients (Stevens et al, 2000; Ho Yen & McNamara, 1991). A MERGE in-house analysis found that 20% of patients reported changing GP at some stage during their illness, and that roughly one third found their GP's attitude to be at best non-committal and sometimes openly sceptical. In a recent development, "Chronic fatigue syndrome/Myalgic encephalomyelitis" was voted by 12.6% (72/570) of respondents to the website of the British Medical Journal as one condition that best fitted the description of a "nondisease" (BMJ 2002; 324: 7334, data supplement). Published items of in-house literature for doctors perhaps clearly reveal how some feel about these patients:
"Never let patients know you think ME doesn't exist and is a disease of malingerers. Never advise an ME patient to make a review appointment. At the end of the consultation, I say goodbye, not au revoir." Dr Mary Church (a member of the BMA Medical Ethics Committee) quoted in the GP magazine, Pulse. 20th October 2001.
"Question: What would be your initial response to a patient presenting with a self-diagnosis of ME? Possible answers:
a) Are you by any chance a teacher?
b) Thank you for making the effort to come along. I am sure we will be able to help.
c) For God's sake, pull yourself together, you piece of pond life.
d) Well, lets just explore that, shall we?"
Dr Tony Copperfield (a pseudonym), described as being a GP in Essex, in Doctor magazine, 2000.
(The `correct' answer was (c).)
"I have every symptom of the disease. The pathogenesis of ME is increasing workload; being undervalued socially, politically, and financially; and being abused by those I try to help. You just have a get on with life." Name and address withheld. Doctor magazine. 18th March 1995.
"If they really insist on a physical diagnosis tell them chronic fatigue syndrome is a complex disorder in which multiple biopsychosocial factors are mediated via the anterior hypothalamus - in other words, it's all in the mind." Dr Douglas Carnall, Bluffer's Guide: Chronic Fatigue. 12th January 1995.
"ME is usually (in my surgery, always) a self-diagnosis: somebody comes in, sits down and says, `I think I've got ME, doc'. This is what we in general practice call a `heart-sink encounter'." Dr Michael Fitzpatrick, "The making of a new disease". The Guardian 7th February 2002.
These quotes sit uneasily with the aspiration in the CMO report:
"The doctor's job should be to `heal sometimes, relieve often, comfort always'." (4.1.2)
"Positive attitudes and cooperation based on mutual respect seem likely to produce best outcomes." (3.3.3)
Rather than promoting a culture in which CFS/ME patients and their carers can begin to be `partners in care', a more likely outcome is the imposition of cognitive behavioural therapy and graded exercise therapy on some patients due to the media spin surrounding the report's conclusions. Patients should remember, however, that doctors have a duty to prescribe cognitive-behavioural interventions or exercise regimens with as much care as they prescribe drugs, and that CFS/ME patients who experience adverse effects or relapse - as indicated by patient reports of graded exercise therapy - may well be entitled to redress though the courts.
page6 Cont tomorrow Feb 5
MERGE: the Myalgic Encephalomyelitis Research Group for Education and Support
Posted by peter200015
at 1:15 PM EAST
Updated: Thursday, 5 February 2004 6:17 PM EAST