The Manchester Myositis Research Group

Internal description


Our overall objectives are to improve the way we treat sufferers with unexplained inflammation in muscle (myositis), by bringing together UK experts, increasing awareness of myositis in the health-care community, improving the way we diagnose myositis, and enhancing health-care professionals training.

Unexplained inflammation in muscle, known as “myositis”, represents a difficult group of related disease, affecting about 10,000 people in the UK. Unlike other muscle diseases such as muscular dystrophy, myositis can be treated. Myositis can also affect internal organs including the heart, lungs and gut. Treatments for myositis can have a lot of side effects and are not always effective. Doctors may not be familiar with recognising the signs of myositis, especially in children. Delays in the diagnosis may lead to irreversible muscle damage; therefore sufferers often remain weak and disabled, leading to a significant burden for carers, parents and society.
Even between experts, there is lack of agreement how to diagnose and treat myositis. The diagnosis can be made by taking a muscle biopsy. The way these biopsies are interpreted varies widely between hospital laboratories and can lead to a wrong diagnosis being made. For example, an incorrect diagnosis of myositis can be made when the correct diagnosis is actually muscular dystrophy, where the potentially toxic treatments for myositis are inappropriate and will not help.
Current treatments are mostly borrowed from related musculoskeletal diseases. There is no national or even international guidance about which treatments to use and at what point in the disease. The fact that drugs for myositis work so poorly reflects our lack of understanding of what causes the disease, and this ignorance has slowed down the development of more effective new drugs. To improve future myositis treatments, a better understanding of what actually causes these diseases is urgently required so that new and more effective drugs can be developed.

Careful research into what causes myositis, working out whether certain types of myositis respond or not to certain treatments, understanding which patients are most at risk of serious complications, and looking at how we can diagnose myositis more accurately is all vitally important, to improve the clinical care of sufferers with myositis. We must re-educate the health-care community that may encounter myositis, to further improve the outlook for sufferers. We need to improve the care given to myositis sufferers and the best way to achieve this improvement is by combining together collective expertise. We would like different medical disciplines such as adult and paediatric rheumatology, neurology and histopathology to work together and share knowledge.

A non-funded organisation, UKMYONET, has been created, which aims to share expertise and generate ideas for future studies and drug trials to eventually produce new treatments. In addition, a UK network exists working on childhood myositis, the Juvenile Dermatomyositis Research Group, and needs to work closely with UKMYONET.

Key findings

Effective start/end date1/01/10 → …

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