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33    Health— International Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Awareness Day

Senator Urquhart, at the request of Senators Polley and Griff and pursuant to notice of motion not objected to as a formal motion, moved general business notice of motion no. 802—That the Senate—

               (a)       notes that:

                                     (i)       12 May 2018 is International Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Awareness Day,

                                    (ii)       ME and CFS are debilitating neurological illnesses that affect the brain, endocrine system and muscles in adults and children,

                                  (iii)       ME and CFS affect between 94,000 and 242,000 Australians, with around 25% of people with ME and CFS unable to leave their house or bed,

                                  (iv)       the lack of a current diagnostic test for ME and CFS is a barrier to people receiving timely and accurate diagnosis,

                                   (v)       there is no current cure or effective treatment for ME and CFS and more biomedical research needs to be done to better understand this medical condition, and

                                  (vi)       there are actions and activities across Australia this week to mark Awareness Day, including Millions Missing events;

               (b)       acknowledges:

                                     (i)       the positive development of the National Health and Medical Research Council (NHMRC) establishing a ME/CFS advisory committee to advise if new guidelines are needed in Australia, and

                                    (ii)       the important role of families and carers of people living with ME/CFS; and

                (c)       urges:

                                     (i)       the NHMRC to ensure the ME/CFS advisory committee runs an open and transparent process that includes advice from leading scientists and clinicians, and

                                    (ii)       federal, state, territory and local governments to take leadership and work with people who have ME/CFS to help them get the support they need.

Question put and passed.