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Posted on Wednesday, 3 October 2018

Conference: Dr Blum is again the Chairperson for the Neuro-Immunology Association who hold a conference every second year. With the Doctors gathered for this conference, it has previously presented an opportunity for our conference to follow. Dr Blum is happy to work towards this objective being achieved again in 2019. He will work towards creating a Brisbane Conference in mid-2019.

 

Medical Advisory Group for Myasthenics : The Committee drafted a 'Terms of Reference’ document for such a group to be formed and then approached key Doctors about their willingness to participate. The initial group will consist of Dr Blum as Chairperson, supported by Dr Stephen Reddel, Dr Katherine Buzzard and Dr Bill Harris. Our sincere appreciation is expressed to each Doctor for the time and interest given to being involved in this Medical Advisory Group.

 

Rituximab Questionnaire: This is an on-going exploration in relation to accessing the treatment option, Rituximab/MabThera.  A questionnaire was sent out and many people responded. The range within these responses is very diverse.  An introductory letter has been sent to Minister Hunt to discuss this varying availability. A reply has not been received. Currently, the plan is to submit a more formal letter to Minister Hunt prior to the end of the year.

 

MG versus MGen: An unfortunate media release occurred in July this year. In discussing the Sexually Transmitted Infection, Mycoplasma genitalium (Mgen), a reference was made to this condition using the acronym MG. This is not the standard abbreviation used for this condition but unfortunately it was picked up by the journalists as a good headline   After much communication with relevant groups and individuals our sincere thanks are expressed to the organisations and individuals who are now aware of Myasthenia Gravis and have offered their support in maintaining clarity between the two conditions.

 

Drugs to be Used With Caution: An updated publication on this topic was promised sometime ago and the Committee understands that it is eagerly awaited. Unfortunately, we have been struggling to present this new document. It is a work in progress but due to the enormous range of names and regulations applying to each medication it is proving challenging.

 

eNID/MSBase Update: The Committee is maintaining contact with Dr Reddel and Dr Buzzard as they wait for MSBase to progress their database ready for construction of the eNID project. We are also in touch with the working party members of MSBase eNID group.