Three Approaches to CFS in the UK, Australia, and Canada: Lessons for Democratic Policy

[Dolphin]

http://link.springer.com/chapter/10.1007/978-3-319-32240-7_11

Chapter
Big Picture Bioethics: Developing Democratic Policy in Contested Domains

Volume 16 of the series The International Library of Ethics, Law and Technology pp 227-243

Date: 28 July 2016
Three Approaches to Chronic Fatigue Syndrome in the United Kingdom, Australia, and Canada: Lessons for Democratic Policy

• Rachel A. Ankeny
• , Fiona J. Mackenzie

Abstract

Decisions about diagnostic categories through clinical practice guidelines (CPGs) represent a central type of informal policy-making which affect the scope of publicly-regulated health services and directions for future research.

We examine the development of three diverse sets of CPGs for chronic fatigue syndrome (CFS) in the United Kingdom, Canada, and Australia in order to examine diverse approaches to the development of such guidelines by medical professionals and other ‘experts’ in concert with inputs from the public, particularly those affected by the disease condition.

We argue that the CPGs formulated for CFS in the United Kingdom, Australia, and Canada reflect three contrasting modes of policy development, and that the differential levels of acceptance of these guidelines by a range of relevant parties provide guidance as to which mode of policy development is likely to be most effective and acceptable particularly in the domain of controversial or contested domains within medicine.

Keywords
Policy Chronic fatigue syndrome Clinical practice guidelines

 

[Dolphin]

These relate to these 3 guidelines, which are quite old at this stage:

Royal Colleges of Physicians, and Psychiatrists and General Practitioners. 1996. Chronic fatigue syndrome: Report of a joint working group of the royal colleges of physicians, psychiatrists and general practitioners . London: Royal College of Physicians.

Carruthers, Bruce M., et al. 2003. Myalgic encephalomyelitis/chronic fatigue syndrome: Clinical working case definition, diagnostic and treatment protocols. Journal of Chronic Fatigue Syndrome 11: 7–115.

Toulkidis, Victoria, produced by a Working Group convened under the auspices of the Royal Australasian College of Physicians, et al. 2002. Chronic fatigue syndrome. Medical Journal of Australia 176(S): 17–55.

 

[Dolphin]

If you are not a fan of guidelines which recommend CBT and GET and recommend against pretty much everything else, you might like what they have to say. However they take a long time to say it and such points come and go in the document.

 

[Dolphin]

In brief, the problem-solving model (see Weiss 1979 ) emphasizes the role of research in policymaking as the main—if not the sole—relevant source of evidence. Once a policy problem is identified, the solution is sought through research (whether it be drawing on an existing corpus or facilitating ongoing or even new research), and then information is translated from the research context into the policy domain. Policymakers work on the assumption that knowledge exists that can answer the question (or that such evidence can be relatively easily generated). Although this process might be the most ideal, a key criticism of this model is that it does not reflect the realities of policymaking in that it assumes availability of relevant research at the time at which the policy needs to be made as well as the potential for relatively straightforward translation of research into policy.

 

[Dolphin]

Background: Clinical Practice Guidelines

[..]

However, more subjective factors influence the adoption and use of CPGs, as physicians are more likely to follow them if they are uncontroversial (Gundersen 2000 ) and if developed by a trustworthy source, such as a professional medical association or college.

 

[Dolphin]

The skepticism of some in the medical community appears to have been related to the vague nature of the illness definition, the unconventional doctor– patient relationships developed through the activism and intense involvement of lay advocates, and the social and symptomatic construction of CFS in the absence of more traditional forms of scientific evidence.

In turn, members of the CFS patient community viewed this skepticism in terms of what it meant for them, namely that they were disbelieved and viewed as malingerers not suffering from something ‘real’: thus medical scientists were thought to have become “overly reliant on objective tests while denigrating the patient’s experience,” equating the “‘not known’ with the ‘not real’” (Aronowitz 1998 , 33). Some went further to claim this phenomenon as dangerous, citing cases of patients that remained undiagnosed despite the presence of debilitating and even life-threatening illnesses. It is undeniable that patients with this condition suffered directly not only from the condition itself but also indirectly through community and professional attitudes that took the medical profession’s word as final and related to the ‘patients’ accordingly, often stigmatizing them.

 

[Esther12]

In the references it looks like it was written during 2014/early 2015, so pre-Tuller.

 

[Dolphin]

The UK document was explicitly not a consensus document. During the process of formulating the document, the working group did not make any attempts to foster or engage public opinion or patient experiences. In addition, it was reported by a patient advocacy group (known as the ‘25 % ME Group,’ due to its focus on the severe form of the condition which affects 25 % of those with ME) that the working group refused to collaborate with the National Task Force, upon whose report they claimed to be building to produce the 1996 document. Moreover, the working group actually opposed some of the 1994 report’s statements, most notably the claim that ME was a major sub-group of CFS (to be discussed in more detail below). There were no calls for external inputs to the report and both the working group and the government consistently dismissed criticisms or reactions from the public, including scientists, clinicians, and sufferers; a petition with 12,000 signatures calling for the report’s withdrawal was presented to the House of Lords in late November of 1997 and subsequently rejected (Montague and Hooper 2001 ).

 

[Dolphin]

In addition, some have claimed that the UK government deliberately produced a report that was both biased toward psychiatric approaches and recommended against somatic research into CFS in order to save money on pensions as well as research and to pacify the insurance industry. A UK parliamentary group in 2006 pointed to potential conflicts of interest relating to this due to existing consultancy relationships between the Department for Work and Pensions and the insurance industry (UK Parliamentary Group 2006 ).

This is what the 2006 report actually said on the issue:

6.3 How the Department for Work and Pensions Formulates CFS/ME Policy

There are genuine problems in the benefit assessment procedures for CFS/ME and as yet there is no agreement on new written guidance to replace that which is currently in use. This consultation process, involving meetings and redrafting, has been going on for over a year, but government looks like adopting a new benefits policy which may still leave it discriminating against claimants with CFS/ME.

There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body. It may even be that assessment by a medical ‘expert’ in a field of high controversy requires a different methodology of benefit assessment.

 

[Dolphin]

Criticisms to the 1996 UK Joint Colleges report mounted at this time, focused on inadequacies in content and evidence evaluation, working group bias, and the overall limited usefulness of the document.

The criticisms regarding bias and a lack of consultation in the United Kingdom also were addressed in the Australian process by convening a more inclusive and diverse working group and including community consultation. Australia’s drawn-out attempts to produce a definitive CPG document on CFS had consistently involved different levels of consultation since as early as 1993 with the CFS Review Committee described above.

Initially, following the release of the Watson Report’s recommendations, members from the RACP and ASCIA met to discuss fulfilling one of the recommendations and forming a consensus position on the diagnosis and management of CFS. However, the release of the National Health and Medical Research Council (NHMRC)’s ‘guidelines for guidelines’ in 1995 changed this course of action, and in February 1996 the Department of Health funded the RACP to lead a working group to produce evidence-based CPGs instead. The Commonwealth had expressed concern that a consensus conference “would result in an outcome that is not representative of the medical profession” (RACP I109, April 1996),

 

[Dolphin]

Canada Goes ‘Interactive’

In contrast, the thrust of the processes relating to CFS CPG development in Canada from start to finish was consensus generation. The CPG development panel was selected via a nomination process, covering what were claimed to be the five broad categories of stakeholder groups (government, university, clinicians, industry, and advocacy), and included international involvement. Although the document produced (Carruthers et al. 2003 ) was evidence-based, there was a more inclusive approach taken than in the United Kingdom or Australia, with a wider range of levels of evidence considered, such as accepting expert opinion and background information, or even case series, as relevant.

 

[Dolphin]

there is clear evidence in the policy documents of respect for patients and their experiences, such as in the statement that “most patients are well motivated to improve their condition and have lost much more than they could possibly ever gain from becoming ill” (46).

 

[Kati]

Canada has done nothing at all. Dr Carruthers lost his clinic mid 1990's, after Wessely came to Vancouver and told our doctors we had false illness beliefs. Carruthers never had it easy and was never allowed to use any kind of medication including Immunovir. He worked in the shadows, at least in his late years. When I saw him he was practicing out of a physiotherapy office, in a treatment room. That's how I was referred to him in the last months he was able to practice, it was really hush hush, I had to jump through hoops.

Recently while looking up the Canadian government health pages, a link pertaining to 'chronic fatigue syndrome' transferred to a site about occupational fatigue. They now changed it to a link to the CCC. But quite honestly, the CCC here in Canada is not widely distributed nor widely known. It is not taught in med schools.

I wrote several letters to the health minister and Public Health Agency of Canada throguhout the years I was sick. Essentially, the public health officer was awaiting for the CDC to move to action, and you know where that leads. The Research institute president was pointing me out to the Cochrane reviews. You know where that leads.

There is no leadership here. The medical schools think it's all in our heads. Some provinces nestle ME inthe 'Environmental illness' category (Ontario) which means it gets little to no funding at all, and patients there are only allowed 2 visits: one for diagnosis and one for 'follow up' whatever that means. Here in BC, it's group therapy a go-go. There is no testing and there is a tendency to reframe ME, FM and Lyme under Central Sensitivity Syndrome. i hear there is a very strong influence from the psych lobby university in BC.

Disclosure: I didn't read the article. (Reading hurts my head)

 

[Dolphin]

Responses to the Three Documents

The UK document was extensively criticized soon after its release by numerous parties particularly in grey literature such as correspondence and internet-based activism for a range of reasons: the most frequent and vociferous attacks were on the methodology utilized, and the low quality of the review and analysis of the existing literature and evidence. The report also was condemned for being issued in an isolated context and being heavily biased, especially given that it involved no public consultation and appeared to reflect a poor understanding of CFS patient experiences and the special needs of CFS sufferers. A particular concern was the clear bias toward psychiatric factors in terms of management and causation, and against organic or somatic causal factors. In addition, the report was faulted for sloppiness in the interchangeable use of different terminology without clarification, poor understanding with regard to fatigue symptoms, inaccurate and misleading epidemiological reporting, failure to consider the range of symptoms and severity of illness, and frequent mischaracterization of available evidence. In short, the report was thought to provide inadequate guidance to be of any use for doctors or patients, in no small part because of the lack of inclusion of actual CPGs.

 

[Dolphin]

Similarly, an Australian ME/CFS patient group explicitly outlined its reasons for supporting the Canadian guidelines over the Australian ones: a clearer and fuller definition of the spectrum of the disease which was not just focused on fatigue; lack of psychiatric bias; recognition of problems with various studies and certain levels of evidence; inclusion of patient reports and clinical experiences where research evidence was lacking; and development of a new (and more useful) clinical case definition.

 

[Dolphin]

Criticisms of Evidence-based Medicine

The problem-solving model clearly has limitations particularly in areas where the types of evidence privileged in an EBM approach do not map well onto the existing evidence base. Elliott and Popay ( 2000 ) summarize key criticisms of EBM as they apply to its use within policymaking processes: it is “too closely identified with randomized control trials, marginalizing research using other designs” (462). Even more importantly, EBM does not address how to weigh or integrate the types of value judgments which are required when writing policy, nor are there standardized methodologies for how to integrate evidence based on research, clinical practice, and patient experiences. Finally, EBM alone does not provide guidance on how make evidence transferable to practice, or in this case to CPGs.

@alex3619

 

[Dolphin]

The nature of and ground rules for broader public consultation as part of the dialogical model for policymaking impact on the development of such expectations (and the resultant backlash that may occur should they not be met). If not done ‘correctly,’ consultation can leave participants feeling fed-up, disappointed, and angry, rather than viewing themselves as having been heard (even if their opinions are not fully endorsed) and as respected contributors to the policymaking process.

 

[Dolphin]

the working group for the Australian CFS CPGs found dialogue highly problematic as they attempted to juggle two opposing models.

 

[Dolphin]

Hence in the Australian context, inputs coming from patient and advocacy groups, and even CFS-friendly clinicians and researchers, were relegated to the category of level IV evidence and often dismissed against the backdrop of other available evidence sources, resulting in a fallback to a form of the problem-solving model.

 

[Dolphin]

An interactive, consensus-driven approach such as that used by the team producing the Canadian CPGs seems to be more appropriate than the approaches taken in the United Kingdom and Australia in situations where there is limited, conclusive research evidence, as is the case in many highly contested medical domains.