Research begins on muscle disease

January 29, 2018

Prof Merrilee Needham and Dr Jerome Coudert aim to help sufferers of a mysterious muscle wasting disease

Research has just begun at Murdoch University to understand more about a mysterious muscle wasting disease.

Professor Merrilee Needham is leading a study into Inclusion Body Myositis (IBM), an inflammatory muscle disease leading to progressive wasting and weakness of muscles, particularly the thighs and forearms.

Professor Needham is Foundation Chair in Neurology, a joint position between Fiona Stanley Hospital, Murdoch University and Notre Dame University.

“IBM is associated with an abnormal immune response with invasion of killer cells (cytotoxic T-cells) into the diseased muscles, but we currently do not understand the cause or mechanisms of the disease,” Professor Needham said.

“The initial signs of the disease can be very non-specific, with sufferers finding difficulty in climbing stairs, rising from low chairs and using utensils and tools.

“As a result many patients seek medical attention only once the disease has progressed enough to cause them to start having falls, having difficulty swallowing or to suffer from daytime fatigue from sleep disordered breathing.

“Patients do not respond well to traditional immunosuppressive treatments and there is currently no cure available.”

Professor Needham with her team led by Dr Jerome Coudert, has begun to characterise the disease by testing the immune cells and muscles of IBM sufferers, and defining the genetic sequence of the receptors on the immune cells responsible for muscle aggression.

“We still do not know which molecules are triggering the immune response within the muscles but we hope that characterising these receptors will shed light on the cause of the disease,” Professor Needham said.

“Ultimately we are aiming to understand the mechanisms of how this disease starts and progresses so that we can diagnose the condition earlier and more accurately, and develop more effective treatments.”

The initial studies are funded by the Brain Foundation.

 

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Comments (9 responses)

Dale Harrigan January 29, 2018

I have IBM and happy to be included in research.
I live in Melbourne but willing to travel. Just want to
Be part of finding a treatment or (please) a cure!

Ron Henney January 29, 2018

Great news as being a suffer of this horrid disease the more research the better and im pleased its in the area of how and why

Ana Sastrias January 29, 2018

I was the wife and ex-carer of my late husband who passed away a 24/02/2013 due to Pneumonia by aspiration, IBM, SMA, Osteoporosis.

Our experience, my late husband living with his fisease and myself witnessing the muscle degeneration and seeing him much more limited and dependant, took 20 years joirney. The first 6 years we knew there was a myopathy diagnosed, but yhere was not a conclusive diagnostics aboit whether it was a Polimyositis or IBM which was classed as a very rare disease with not much research done during 1990s. In the yar 2000 my husband got diagnosed as having Spinal Muscular Atrophy. Both disease are incurable with no effective treatment.

I must admit that I kept a very methodical and disciplined lyfe style and achieved as a carer for my late husband to have a bot of good quality life. I managed to msintain him at home with me for all the disease years until he got hospitalised on his last 3 months of his life snd then 10 days in nursing home as Paliative Care Resident. This was quite traumatic for him and very hard for me as his only family member in Australia, as we migeated from Mexico to Australia 16 years earlier.

JoAnne Oliver January 31, 2018

I've read many articles where research has been done but never heard of any progress at all. It seems as though us with IBM are caught in an unsolvable time warp with virtually nothing on the horizon to help. I certainly hadn't planned on this when I retired.

Harry Booth January 31, 2018

I have Ibm, live in north central florida, am willing to participate in any upcoming studies Thanks

Eugenie Harris January 31, 2018

Thanks Harry. I have passed your details onto Prof Needham and her team.

Eugenie Harris January 31, 2018

Thanks for sharing your story Ana. You did an amazing job to care for your husband for so long.

Eugenie Harris January 31, 2018

Thanks for your support Ron.

Eugenie Harris January 31, 2018

Thanks Dale. I've passed your details onto Prof Needham and her team.

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