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Electronic letters published:
![[Read Comment]](/icons/misc/sectionDOWN.gif){kind=icon}
Educating the medical profession is the key
Negotiating the label of CFS
Care based on Social Networks because of Misrepresentation?
Medical care free of science and based on social networks
Using multiple sources of knowledge to reach clinical understanding of Chronic Fatigue Syndrome
Communication between doctors and patients withCFS
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John R. Anderson, Brisbane, Australia M.E. Sufferer
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Prestigious medical journals are unwittingly adding to the difficulties facing general practitioners in diagnosing and treating the disease that was scientifically named Myalgic Encephalomyelitis in 1956. This medically-explained polio-like neurological disease has been the subject of intense political and psychiatric interference for over 20 years resulting in the substitution of CFS and broad guidelines which do not accurately describe the disease nor how to diagnose and treat it due to flawed research based on this unscientific criteria. Dr Peter White is one of several psychiatrists who have contributed to this lamentable state of affairs and continues to interfere in a speciality completely unrelated to his field of knowledge. The authors of the article have a vested interest in 'fatigue', writing on behalf of the FINE trial group which is funded by the MRC; but this disease is not a fatigue state any more than cancer or heart-disease is a fatigue state. Health departments and psychiatrists have produced a number of misleading CFS guidelines for doctors rendering them ignorant of the epidemic history of the disease, the serious biomedical and genetic abnormalities, and how to effectively treat patients. It is the lack of suitable guidelines for M.E. and the failure to appropriately investigate the conditions falling under the CFS umbrella label which are the source of heart-sink in dealing with M.E. patients and misdiagnosed chronically fatigued patients. I concur with Ian McLachlan's reference to "the appalling fact that the illness is often misrepresented as free of science". Until governments act in the best interests of the whole community regarding this infectious neurological disease, patients have no choice but to research the disease themselves and bring genuine information to doctors whom they realise have no credible guidance on diagnosing or treating this disease. Therefore the patients desire to share the position of expert with their doctor is well- grounded as they are generally better educated about the disease, symptomatic or viral/bacterial treatments, and well known off-label medications which have been found to help these patients. Evidence that patients may bring include the internationally acclaimed 2003 Canadian Consensus Guidelines which do list the sophisticated diagnostic tests needed to diagnose the disease and symptomatic treatments, new research findings presented at ME/CFS conferences, and information from the internet on treatments and protocols designed by expert doctors who have decades of experience in diagnosing and treating these patients. Far from being drowned in "uncritical, non- evidence based and useless information", doctors might actually learn what has been known for decades. Multiple sources of knowledge that are factually incorrect or misleading have distorted understanding of M.E. and differentiating from undiagnosed fatiguing conditions under the CFS label. An editorial featuring an overview of the Canadian Consensus Guidelines and the epidemic history of M.E. would be far more educational than 20 year's worth of misleading CFS research. Competing interests: None declared |
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Carolyn Chew-Graham, Manchester UK Senior Lecturer in Primary Care, School of Community Based Medicine, University of Manchester., Greg Cahill, Christopher Dowrick, Alison Wearden, Sarah Peters
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We thank those who have made helpful comments about our paper. Van der Meer and colleagues state that there is no excuse for doctors not having the information about CFS/ME in order to make the diagnosis. There is, however, evidence of limited integration of biomedical with behavioural and social sciences. Conditions such as CFS/ME may be neglected at medical school, thus the foundation is not there for developing understanding at a later stage in the GP’s career.1 White reminds us that there is available evidence about the management of CFS/ME, and that whilst there may be lack of continuing education and training, it might also be that primary care is not the optimal context for the diagnosis and management of CFS, despite this being the suggestion of the NICE guidelines.2 Thus, there is a problem in translating evidence and clinical guidelines into practice. This is further magnified when the illness/symptom collection in question is not prioritised for financial reward within the Quality and Outcomes Framework of the British GP Contract.3 We acknowledge the point made by van der Meer that if doctors are presented with uncritical, non-evidence based information this can lead them to feel that the patient is bringing a diagnosis and this is likely to cause irritation to doctors. This irritation accompanies the dilemma faced by GPs in consultations with patients who have chronic fatigue, so further exacerbating GPs’ feelings of helplessness in the face of difficult-to-explain symptoms. The subsequent impact on the consultation and the doctor-patient relationship is well described.4,5 As May suggests, attributing a label or name to a set of symptoms within a consultation is more than simply a technical task, and has important ritual meanings for both participants. Giving or refusing names is central to the lived experiences of illness. May also supports our view that further observational research is vital to help us understand clinical encounters in which there are negotiations over the meaning and severity of symptoms, and struggles over the label used. 1. Litva A & Peters S. Exploring barriers to teaching behavioural and social sciences in medical education. Medical Education 2008: 42: 309–314. 2. National Institute for Health and Clinical Excellence. Clinical Guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London, NICE, 2007. http://guidance.nice.org.uk/CG53 3. Department of Health. Quality and Outcomes Framework. Guidance. 2004. Department of Health. 4. May CM, Allison G, Chapple A, Chew-Graham CA, Dixon C, Gask L, Graham L, Rogers A, Roland MO. Framing the doctor-patient relationship in chronic illness: a comparative study of general practitioners’ accounts. Sociology of Health and Illness 2004 26; 2: 135-158. 5. Chew-Graham CA, May CR, Roland MO. The harmful consequences of elevating the doctor-patient relationship to be a primary goal of the general practice consultation. Family Practice 2004, 21:229-231. Competing interests: None declared |
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Ian T McLachlan, Birmingham. UK ME Sufferer
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In response to the Chew-Graham and colleagues article, Peter White’s asks if the attitudes and beliefs of both patients and physicians relate to a lack of published guidelines that were easily available at the time. He is of the opinion that the short answer is no. He feels the physician’s uncertainty and ignorance cannot be attributed to the lack of available guidance, but instead probably reflects, either the inefficiencies of ongoing professional education and training in the UK, or that perhaps primary care is not the optimal context for the diagnosis and management of CFS. If uncertainty and ignorance cannot be attributed to a lack of available guidance, could it not therefore be that medical care is being based on social networks because of the appalling fact that the illness is often misrepresented as free of science? Something that neither White nor Chew appears to have considered. It does seem a little strange that GP’s are not choosing to be guided by such examples as White has given, but deriving more value from the opinion and experiences of their patients. Most of whom I believe feel that the challenge now, is actually to make sure that our scientific understanding of Myalgic Encephalomyelitis is increased via biomedical research, before it should be fully translated into clinical practice. Competing interests: None declared |
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Peter D White, London, UK Professor of Psychological Medicine, Barts and the London Medical School
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I congratulate Chew-Graham and colleagues for a carefully conducted and important study of how patients and physicians understand and cope with unexplained ill health, specifically chronic fatigue syndrome (CFS). Both patients and their family physicians seemed to share uncertainty about either whether CFS existed or how to treat it. Good clinical care seemed to be most strongly dependent on the family physician knowing someone with CFS within their social network. Were these attitudes and beliefs related to a lack of published guidelines that were easily available at the time? The short answer is “No”. In the UK, where these patients and physicians lived and worked, two published reports advising on diagnosis and management had been available for some time.1, 2 One report had the imprimatur of three Royal Colleges of general practitioners, physicians and psychiatrists,1 and had been well publicised nine years previously. One of the Royal Colleges involved in this report was responsible for the training and examination of family physicians. The other guideline had the approval of the UK government’s Department of Health,2 and had been sent to all family physicians in the UK. These guidelines were supplemented by others available on the internet from other countries, such as Australia, as well as published systematic reviews of management.3 This is hardly a ringing endorsement for the success of science in banishing ignorance. So, physician’s uncertainty and ignorance cannot be attributed to a lack of available guidance. In stead this probably reflects either the inefficiencies of ongoing professional education and training in the UK, or perhaps that primary care is not the optimal context for the diagnosis and management of CFS. Fortunately the UK has seen a recent publication of the most authoritative guideline so far; that produced by the National Institute for Healthcare and Clinical Excellence, an independent quasi- governmental organisation responsible for publishing all clinical guidelines for the UK National Health Service.4 This gives explicit advice regarding diagnosis and management in both primary and specialist care, is easily accessible to both patients and healthcare practitioners, and has been welcomed by two of the UK’s largest CFS patient charities.5 The challenge now is to make sure that our scientific understanding is translated into clinical practice.5 There’s the rub, since relying on a physician knowing someone socially with CFS is probably not the most reliable way to advance clinical care. 1. Royal Colleges. Chronic fatigue syndrome: report of a joint working group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners. London: Royal College of Physicians, 1996. www.rcplondon.ac.uk/pubs/brochure.aspx?e=60 2. CFS/ME Working Group. A report of the CFS/ME working group: report to the chief medical officer of an independent working group. London: Department of Health, 2002. www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4064840 3. Whiting P, Bagnall A, Sowden A, et al. Interventions for the treatment and management of chronic fatigue syndrome: a systematic review. JAMA 2001;286:1360–8. 4. National Institute for Health and Clinical Excellence. Clinical guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London, NICE, 2007. http://guidance.nice.org.uk/CG53 5. White P, Murphy M, Moss J, Armstrong G, Spencer P. Chronic fatigue syndrome or myalgic encephalomyelitis. BMJ 2007;335:411-412. http://www.bmj.com/cgi/content/short/335/7617/411 Competing interests: I provide consultancy advice to a re-insurance company. |
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Carl R May, Newcastle upon Tyne, United Kingdom Professor of Medical Sociology, Institute of Health and Society, Newcastle University
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Fatigue has a long history, and from the 1870s onwards clinical journals began to carry articles that explored the problem of negotiating the patients’ experiences of fatigue as illness, and its meanings and effects. Mostly this was from the medical perspective and it is only in the last twenty years that researchers from the clinical and social sciences have begun to critically investigate the points of contact between ‘professional’ and ‘lay’ experiences of chronic fatigue (1). While there are many points of contact, there is one significant point of conflict. This remains, as Chew-Graham and colleagues’ paper emphasises, the moment of diagnosis and the act of attribution. This is always in contention in CFS where the nature of the illness itself is the focus of considerable disagreement The giving of names to human experiences is of more than technical importance in medicine but has important ritual meanings for participants, and giving and refusing names is central to the lived experiences of illness. Chew-Graham and colleagues help us by pointing to some of the mechanisms by which diagnostic naming is negotiated, and particularly the tools that each party takes from the other—physicians deploy the language of science but seek to co-opt the language of experience, and patients the deploy the language of experience but seek to co-opt the language of science. One patient who seems to have been particularly successful (Patient 24) in this process appears to have operationalized a superscientific—but still unverifiable—explanation from clinical genetics. It is possible that neither party was able to effectively dispute the position adopted by the other. Genes trump psychology in the era of biomedicalization. Having outlined the ways in which physicians and patients account for themselves, this paper opens up the question of further empirical evidence, and argues the case for observational studies that will verify or not the claims that doctors and patients make about themselves and each other in interviews. Importantly, such research will help us to understand a wide variety of clinical encounters in which there are negotiations over the meaning and actual severity of symptoms, and struggles over the naming of parts. In this context, an approach that seeks to understand the rhetorical tools of ritual disputation will be vital. 1. Shorter E. A history of psychiatry: from the age of the asylum to the age of Prozac. New York: John Wiley and Sons, 1997. Competing interests: CRM was formerly an external member of the MRC FINE Trial Steering Group. |
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Jos WM van der Meer MD PhD FRCP, The Netherlands Professor of internal Medicine, Radboud University Nijmegen Medical Centre, Gijs Bleijenberg, PhD, Professor of Medical Psychology
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The paper by Chew-Graham et al et al describes the tension between patients with chronic fatigue syndrome and their primary care physicians. Perhaps more than in any doctor-patient relationship, in case of CFS the relationship may easily deteriorate. Even in case of a basically good doctor-patient relationship the patient with CFS does not feel understood by the doctor, while the doctor feels poorly equipped for his job with this patient. General practitioners in the Netherlands also experienced that interacting with patients with CFS is more difficult than with other patients [Prins et al, 2000]. According to the paper by Chew-Graham et al, doctors feel that they do not have access the right information at hand and patients sense their doctors uneasiness. Also the paper claims that patients should provide their doctor with the rich knowledge base they posses. We have a couple of remarks regarding this paper. 1] We feel there is no excuse for doctors to state that they do not have access to good state of the art literature on CFS. There are a quite a series of recent reviews in first class journals that can be accessed through Pubmed. Of course that takes some time and preparedness, but that is not different from any other area of medicine. The argument that it was not taught in medical school holds for many topics. 2] We are not sure what is meant by the rich knowledge base the patients possess. First of all, if it concerns information from patient organisations and from individual patients from the internet, the doctor will easily be drowned in uncritical, non-evidence based and useless information. In addition, the patient as a knowledge provider comes close to one of the areas of friction between CFS patients and their doctors: It is not rare that the patient comes in with the self diagnosis CFS/ME, and this reversal of roles (the doctor being no longer the person who makes the diagnosis) may well be a reason for irritation. 3] The relationship between the doctor and the patient can only flourish if there is an open communication and mutual trust. The first assignment for the doctor is simple: listen to the patient, show empathy and check whether you understand what the patient tells. Thereafter the doctor should check whether the patient has understood what the doctor tries to convey. This is of course very basic and well known, but is really challenged in the encounter between the primary care physician and the patient with CFS. References: Prins JB, Bleijenberg G, Klein Rouweler E, van Weel C, van der Meer JWM. Doctor-patiënt relationship in primary care of chronic fatigue syndrome: perspectives of the doctor and the patiënt. J Chronic Fatigue Syndrome 2000, 7:3-15. Competing interests: None declared |
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