About Myositis Support Group
The Myositis Support Group is the only UK charity focused solely on Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis.
The aims of the Myositis Support Group are:
• To provide information to sufferers and their families
• To help give them a better understanding of their illness
• To relieve the isolation felt by an individual when a rare illness is diagnosed
• To guide sufferers in the right direction for treatment
• To raise awareness of the conditions
• To raise funds to promote research
The Myositis Support Group is able to offer:
• Free UK membership
• Newsletters
• Annual meeting/conference
• Advice on specialist centres
• Interactive website – Discussion Board and Email Contacts
• Listening Ear Telephone Network – Volunteers who offer support
• Active fundraising –Summer Draw, Christmas Cards and webshop www.buy.at/myositis
Since the charity was established in 1985 over £500,000 has been raised by donations and fundraising. Success has been achieved from the background of supporting and promoting these rare illnesses which the general public and even some of the medical profession know little about. The charity has been able to fund many projects and has supported Myositis endeavours at King’s College Hospital, Great Ormond Street Hospital, University College London, Hammersmith Hospital, Birmingham University, Manchester University, and the International Myositis Assessment and Clinical Study Group.
What is Myositis?
Dermatomyositis, Polymyositis, Inclusion Body Myositis and Juvenile Dermatomyositis are miserable diseases but thankfully very rare. The muscles and connective tissues of the body are affected and the main symptom is muscle inflammation and weakness, which may be progressive and can be severely disabling. Myositis can be accompanied by pain, depression and a general feeling of misery. The cause of Myositis is unknown. Dermatomyositis, Polymyositis and Juvenile Dermatomyositis are thought to be autoimmune diseases. This is where ones own immune system recognises its own body tissues as foreign, hence in the case of Myositis the immune system seeks out to destroy the muscles. The cause of Inclusion Body Myositis is also unknown and may be a degenerative muscle disease which is unfortunately unresponsive to immunosuppressive treatments. Myositis can affect people of any age and there is no way to predict who will be affected by it. As yet there is no cure and many will have to take steroids and other toxic drugs. Fortunately, some sufferers do get better but for the majority it is a case of living and coping with the disease and trying to live as near a normal life as possible.
Our history
Les and Irene Oakley started the group in 1985 as a contact for parents and guardians of children suffering from Juvenile Dermatomyositis after their daughter Paula developed Juvenile Dermatomyositis at the age of five. Within months they were contacted by adult sufferers who were too ill to help themselves in a similar manner. The support group became a registered charity in 1987 specifically for Dermatomyositis, Polymyositis, Inclusion Body Myositis, and Juvenile Dermatomyositis.
Les, Irene and the MSG members have worked hard to raise funds for research into the diseases. By 1992 the charity had raised enough funds to support research and advertised in the British Medical Journal the first Myositis Support Group Funded Fellowship. At the time research into Myositis was near to nothing and the Fellowship was met with little response. Of the eight researchers who initially expressed an interest none pursued it further. Myositis research remained near to non-existent for a few more years and Les spoke often about the difficulties in the Newsletters, “Our predicament at present is not only do we need a research doctor, but where can this work be done. We have the money for the pilot but not the plane!”
In 1994 a Myositis Support Group member suggested to Les a doctor at King’s College London who was interested in establishing an adult Myositis clinic and research into the diseases. A meeting with Professor David Scott proved very fruitful and was the breakthrough that was needed.
Today, Myositis research is being performed across the UK, Europe and America with much excitement and enthusiasm. The rareness of the diseases means qualitative research cannot be performed at a single centre. Even a single country can find difficulty in recruiting enough patients to support its work. It is through global collaborations and international working groups that promising research is being performed. The Myositis Support Group keenly supports and promotes this work. The cost of large scale research currently exceeds our funding capacity but the charity would embrace the opportunity to do so. But until then the money raised is spent with the philosophy to fund pilot projects to tempt larger organisations to carrying forward the work. This approach has been fruitful on several occasions.