People felt they were not taken seriously their symptoms were considered psychological rather than physical or were trivialised: “ At the end of the examination, he said ‘I can’t find anything wrong with you, you must have ME, but I don’t believe in it.” This led patients to try complementary or alternative medicine and to turn to significant others, rather than professionals for support. Difficult relationships with health professionals.This can be made worse by being seen on their ‘good’ days: “ I think one thing between me and my GP is complete lack of awareness of how I am when I’m really ill.” People with CFS/ME said they were often denied support because the illness is not physically identifiable or verifiable through diagnostic tests. Feeling invisible, blamed and not believed.A patient advisory group guided the study throughout, from initial planning, and refining the research question, to interpreting the findings.įive key themes emerged from the analysis: The research pooled data from 47 studies that have previously explored the views of people with CFS/ME. The research has implications for the type of care they need from healthcare professionals. So, researchers set out to examine the ways in which people with CFS/ME relate to those around them, and how these relationships affect the support they receive. Many doctors admit that their medical education fails to equip them with the skills necessary for managing the complexities of patients with CFS/ME. Some patients report negative effects from graded exercise therapy.
But these approaches are controversial and experts continue to debate whether they are effective. Some of the main treatments include cognitive behavioural therapy and graded exercise therapy – in which physical activity is gradually increased. There is no diagnostic test for the condition.
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However, the condition is poorly understood and there is a history of disagreement between doctors, researchers and patients about its causes and how to treat it. People with CFS/ME may need support with many aspects of their health and life. This complex condition lasts at least four months and often much longer. They are not refreshed by sleep and may have cognitive difficulties with memory or concentration they may be confused, have slurred speech or problems finding words. It may take them days or weeks to recover from any activity. What’s the issue?ĬFS/ME is characterised by debilitating fatigue people may be unable to leave the house, or to get out of bed. The researchers say that training could help doctors build successful relationships with people with CFS/ME. The findings suggest doctors should take time to listen to the views of their patients (even if they disagree with them) and work together to find treatments that minimise the impact of the condition on the person’s daily life. But they often felt invisible and dismissed by doctors. They found that people with CFS/ME wanted a personalised approach, and for doctors to provide a sense of safety to allow them to work through complex issues. Researchers pooled data from 47 studies on patients' experiences of CFS/ME and their relationships with healthcare professionals. Many potential treatments are hotly debated by doctors and patients.Ī new study explored patients' views on the care they would like to receive. There is no specific test for diagnosing CFS/ME and no 'gold standard' effective therapy. Some describe 'brain fog' and problems with memory, concentration and speech.ĭoctors can find it challenging to care for people with this condition. People with CFS/ME are exhausted for no reason rest does not help and it can take days or weeks to recover from any activity. It is also known as myalgic encephalomyelitis (ME). Chronic fatigue syndrome (CFS) is a complex, long-term condition that dramatically limits people's activities.
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