This is not a good week to have an MS emergency if you are treated by a neurologist who belongs to the Consortium of Multiple Sclerosis Centers (CMSC) or the American Committee for Treatment & Research in Multiple Sclerosis (ACTRIMS). These organizations are holding their annual meeting and in the past they have attracted more than 1800 participants; so if you call and need medical help, don’t be surprised if you are told your doctor is out of town.
This is one of two BIG conferences the neurologists who specialize in MS, attend each year -the other one is the ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis) conference which takes place each fall in Europe. ECTRIMS is ACTRIMS on steroids – there are thousands more participants from all over the world who attend, including many MS medical personnel from the US.
CMSC is the parent organization of NARCOMS (North American Committee on MS), a data gathering group that over 34,000 of us with MS belong to, and participate in their twice-yearly surveys. The data gathered by NARCOMS is used to better understand our experiences as people living with MS. ACTRIMS is a heady academic organization whose members spend most of their time in research rather than treating patients.
I often tell people who are newly diagnosed with MS that there couldn’t be a better time to have Multiple Sclerosis, and the anticipation about the CMSC/ACTRIMS/ECTRIMS conventions tells the story. These are serious clinicians and researchers who want to treat MS, quest to find a cure, and have dedicated their careers to finding ways to help us. ECTRIMS has announced they have over 1,400 scientific abstracts submitted for consideration for their conference this fall – that is one heck of a lot of new research about MS and its treatment.
These days, instead of one lonely interferon-b MS drug from years ago, we now have 10 disease modifying drug choices and many more in the pipeline for approval by the US FDA (Food & Drug Administration). The doctors, nurses, social workers and researchers gather for these conventions to share and discuss their findings and excitement on the quest for a cure and ways to improve our quality of life. Honestly, I can’t imagine attending a cocktail reception with a room full of neurologists, considering most of them use vocabularies I have trouble grasping and they are not known for their wicked sense of humor, but the conversation must be stimulating for them.
The CMSC agenda for this conference holds a variety of topics that will not only produce MS-related headlines, but also yield information that will benefit our medical team in guiding our treatments. The talks, posters and discussions for this meeting include reviewing the risks of the newly introduced oral drug Gilenya, discussions about fall prevention techniques (if you’ve read my blogs, you know I need this one!), and possible therapy choices for people with Secondary Progressive MS (SPMS). Sure to be discussed will be Lemtrada (alemtuzumab), the once a year drug for MS that is expected to be submitted to the FDA later this year – I am particularly excited about that treatment option.
It’s important that we understand how seriously our disease is taken and the resources put into the continuing education of our doctors, nurses and other health care workers. Talk about conventions conjure up images of good times and frolicking, and I imagine there is some time outside of the meetings that our doctors let their hair down a bit and find ways to briefly relax, but that’s not why they are out of town and not available for us. This week’s meetings take place in Orlando, Florida, but don’t expect your medical team to return with golden tans next week – they will mainly be indoors taking in all they can about MS and ways to help us.
Wishing you well,