Wednesday 12 October 2011

Unrelated - ME (GP) Studies

For those who wonder if only a few sufferers have bad experiences, I've included here just a small number of the studies I found during my research into ME's history (for my university dissertation 2010-2011).  I've edited them to make them easier to read.  There were many, many more studies reporting similar results. 


In 2005, Thomas & Smith conducted a study into the analysis of healthcare education about Myalgic Encephalomyelitis... Surveys were sent to 197 ME sufferers in Wales and 120 booklets were sent to typical GP surgeries. Results showed that treatment had been offered to 59.8% of patients; the most popular being antidepressant therapy (92.7%). Only one participant reported returning to normal health after drug therapy, with the majority reporting no change in symptoms. Of the General Practitioner respondents, only 55.8% believed that the condition exists, and 67.4% of these reported diagnosing ME. Informative leaflets about ME were available in only 14.8% of the surveyed surgeries.
 - Thomas, M.A. & Smith, A.P. (2005)
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In 2000, 70% of the 2090 Australian GPs surveyed reported believing ME to be caused by depression.
- Steven, et al. 2000)
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As recently as 2003, a spokesman for the NHS Trust in Scotland stated, "ME is not a condition we recognise or treat".
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A survey was completed by 68 patients to evaluate their level of satisfaction with the medical care they received in a specialised clinic. Two-thirds of participants felt dissatisfied and reported experiencing a delay, confusion, or disagreement over receiving a diagnosis. Many also reported having received a psychiatric diagnosis (which they rejected). They believed the advice given was inadequate or conflicting, and they perceived doctors to be sceptical, dismissive, or as lacking in knowledge of ME. Satisfied patients tended to be those who believed their doctors to have been supportive and interested in their condition. The overall findings suggested that the quality of care had been assessed based on the informational and interpersonal skills of doctors, rather than their ability to treat ME (Deale & Wessely, 2001).
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Another study (Raine, et al. 2004) compared General Practitioners' views of patients with ME to their perceptions of patients with Irritable Bowel Syndrome (IBS) and found that some GPs stereotyped ME patients as having undesirable traits, due to several factors (including not being able to attribute ME to specific location).
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Gilje, Söderlunda, and Malterund (2008) used a sample of twelve participants of various ages from a local patient organisation to 'explore obstructions for quality care from experiences by patients with CFS'. The results described how patients felt that a lack of acknowledgement may be even worse for them than their symptoms. They stated that doctors' lack of knowledge about the illness led to long-term uncertainty or maltreatment. The participants also described feeling that doctors "psychologised" or trivialised their symptoms too much, and even supportive doctors would normally take months, or years, to rule out other disorders and reach a medical conclusion. They expressed wanting their doctors to ask questions and take them seriously instead of behaving in a degrading manner. Lastly, the researchers noted how physical activity had been recommended, but this had made most of the patients worse. Gilje, Söderlunda, and Malterund (2008) concluded that medical care and the experiences of ME patients are still shaped by medical scepticism and ignorance regarding the illness.
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Aspects of Gilje et al's (2008) research are reflected in the results of Chew-Graham et al's (2010) qualitative study… The objective of this study was to explore General Practitioners' beliefs about the value of the label ME, implications of diagnosis, and attitudes towards patients with the illness. Twenty two General Practitioners were interviewed between 2005 and 2008. Chew-Graham et al (2010) reported General Practitioners describing a difficulty in defining ME and suggesting that their role was to exclude physical causes, but having little confidence in positively attributing the label of CFS or ME to patients...  There was also some debate as to whether or not Myalgic Encephalomyelitis actually exists as a medical condition. Chew-Graham et al (2010) concluded that until GPs become comfortable in diagnosing patients with CFS or ME, facilitating management, and having appropriate services to refer patients to, delays in diagnosis will continue and patients in primary care may not receive the appropriate care.
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In February 2011, reports came out of an eight year study which claimed to have found both CBT and GET to be safe for ME sufferers and to have substantial beneficial effects on improving sufferers’ energy levels.  However, Hooper (2010) revealed that the PACE Trial used the Principal Investigator’s own criteria for “CFS” and that the Principal Investigators and other psychiatrists involved in the Trial continue to treat ME as a behavioural disorder; ignoring the scientific evidence identifying damage and dysfunction in sufferers’ major bodily systems, believing ME sufferers to have only an “aberrant belief” of a disorder.
- Hooper (2010)
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Such psychiatrists are admittedly part of the 'Wessely School', which continues to publicly insist upon ME as a mental disorder.
- Hooper, Marshall & Williams (2010)

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