A CALL TO ACTION!! We have sent a media release to over 1500 journalist, radio and tv broadcasters throughout Australia. Of these we have received 2 replies of interest for developing a newspaper article!! A very poor uptake!! Below is a transcript of the media release. Please contact the office on 0395291344 or [email protected] if you would like it emailed. I encourage you to take the media release to your local papers/radio stations and encourage interest in raising awareness. M.E - HIDDEN IN PLAIN SIGHT! The most under-reported medical story of our time Science Watch (2010) considers Myalgic Encephalomyelitis (M.E) commonly known as Chronic Fatigue Syndrome (CFS) to be a new research frontier in the ‘neurosciences and behavioural sciences’ (Maes, M. 2013). The World Health Organisation in 1969 classified ME/CFS as a neurological condition. In recent years, there has been a growing number of research studies into the complexities of this disease. Despite these affirmations, a disgraceful 20% of an estimated 200,000 Australians living with ME/CFS are properly diagnosed. A lack of GP understanding in how to manage and treat this condition coupled with woeful government funding into research into ME/CFS is cognisant of medical and government ignorance and neglect. The result of this quagmire is a patient group that is hidden in plain sight. 25% of sufferers have severe ME rendering them bedbound and unable to perform activities of daily living. For most, their lives will never return to premorbid levels of functioning. The complexities of the condition render the person vulnerable to a multiplicity of symptoms that can change hourly including, in addition to the hallmark symptom of post exertional malaise; pain, sleep and cognitive dysfunction, neurosensory, immune, gastrointestinal and cardiovascular impairments. Patients live with shame and guilt; are not understood by the medical profession and not believed by family, friends, their school communities and work colleagues. ‘Nearly every patient with ME/CFS thinks of suicide at one time or another’ (Dr David Bell, CFS clinician and researcher). They are labelled as malingerers and lazy and live unfulfilled lives. Famous quotes: ‘ME/CFS is one of the most disabling diseases that I care for, far exceeding HIV except for the terminal stages’. (Dr Daniel Peterson – Florida USA). ‘We have documented as have others, that the level of functional impairment in people who suffer from CFS is comparable to multiple sclerosis, AIDS, end-stage renal failure, chronic obstructive pulmonary disease. The disability is equivalent to that of some well-known severe medical conditions… (Dr William Reeves, former CDC Chief of Viral diseases Branch) ‘My dream is that our medical community will produce a formal apology to the patients that – not having believed them all these years – they are facing a real illness’ (Dr Jose Montoya -CFS researcher and clinician – Stanford University) Australia is leading the way internationally in the quest to find a biomarker for this disease. At Griffith University QLD, scientist Sonja Marshall-Gradisnik is at the forefront of research at the new National Centre for Neurological and Emerging Diseases (NCNED).This development offers a glimmer of hope for sufferers and will help inform government, the community and the medical profession. More is demanded. This media release is intended to raise community discussion around this disease to help break down stigma and myths and validate for people their stories. Contact ME/CFS Australia (VicTasNT) – Amanda Kelly (CEO) for more information 03-9529 1344 or email [email protected]
Posted on: Tue, 18 Mar 2014 06:19:41 +0000
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