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There are many illnesses which are not yet properly defined. Some of them are very complex and display multiple clinical symptoms. For those reasons, most immunological disorders are referred to as 'syndromes' (collections of certain symptoms for which there is not one exact known cause). Treatment is often limited to the management of symptoms, because the exact cause is still unknown or is not yet correctible. "Modern medicine may not know the cause of these and other conditions, but that does not mean people are not ill, do not need information and support and do not deserve a better quality of life." |
One of the main reasons why people suffering from such syndromes should be able to receive care and support is because for many syndromes, markers to identify a specific physiological causal area and markers for subsets of patients have been found and acknowledged. With C.F.S./M.E. and Fibromyalgia that is not yet the case. Markers are still being collected and physiological processes are slowly being mapped. Researchers stress to find a cause and views differ among researchers on symptoms, cause and contributing factors. For patients who suffer from these syndromes it is often difficult to recognise the symptoms for what they really are - a warning sign that indicates a problem, rather than the problem itself. Without the co-operation of primary care practitioners they are left on their own. It may very well be that there is a genetic factor responsible for these disorders, but until that is found..... A lot can be achieved by analysing the various symptoms, mapping adverse reactions to drugs, foods, herbs and supplements and changes to the environment and by doing regular bloodwork to find a pattern which might lead to some answers.  When we break down C.F.S./M.E. and Fibromyalgia, there are various symptoms that occur in most patients: | Irritable Bowel Syndrome Insomnia Joint pain Muscle pain Neuropathy
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If a patient would report to a doctor with one single one of those problems, patients would receive relieving medication, often with little more then a physical examination. Why is it that C.F.S./M.E. and FM patients who show ALL those symptoms do not get the same attention and medication but instead are referred to Cognitive Behavioural Therapy..? Did Cognitive Behavioural Therapy ever cure 1 of those conditions... probably. Did C.B.T. ever cure C.F.S./M.E. or FM... the answer from patients asked this question is loud and clear "NO it has not". "So, where is the logic in our doctors' perspective? Why do our family doctors and specialists still not open their eyes to what is obvious to the rest of the world....?" |
Our message is two-fold and very clear.... CFS/ME and FM are physiological in origin. When ANY patient presenting with such or similar problems is pointed towards a psychologist without proper investigation, their physical pain does not subside and complications as a result of poor diagnostics and not receiving treatment will arise. Secondly, most auto-immune and some rare diseases in early stages present themselves with symptoms similar to C.F.S./M.E. and FM. Some of those disorders will not manifest themselves fully until a crisis arises. If such disorders are not diagnosed at onset of problems, then monitoring and regular testing to scout for the development of immune and blood disorders is required in all patients with ill-defined symptoms.
We hope to help increase awareness of these issues by opening doors to information which can help improve communication between patients and doctors. As the CDC says: "Get informed, get diagnosed, get help" |
