"For me the best thing about going to conferences is that it allows you thinking time, and time to interact with like minded colleagues. After my platform presentation on early aggressive treatment several European neurologists came up to me and suggested we form a lobby group to get the EMA to change their philosophy regarding treating MS. I agree if we don't do it who will? We have to be advocates for the people we are looking after."
"At the moment we can't offer highly effective therapies to MSers in Europe as first line therapies. This is a great tragedy. By the time we have cycled active MSers through first-line therapies to show they don't work MSers with active MS have lost brain. They may have developed cognitive impairment that is irreversible and will almost certainly have lost brain reserve that they need in the future to deal with the ravages of ageing."
"Time is brain!"
"Tell me of another chronic, destructive, progressive disease in which we wait before treating? Nephrologists, Cardiologists, Rheumatologists all value the kidney, heart and joints more than we do the brain and spinal cord in MS. It is time to change this nihilistic attitude."
"I therefor propose rebranding MS as a progressive dementia, which in reality it is. People with MS don't know it, but they have a dementing illness. The good news is that unlike Alzheimer's and other dementias we have treatments for MS that could prevent, slow down, or stop the dementia. That is something we need to focus on. My colleagues in the fields of Alzheimer's and Parkinson's disease are envious of the progress we have made in MS. Are you surprised?"
"The following is a standard definition of dementia and I challenge anybody to prove to me that MS as a progressive disease doesn't fulfill this definition."
Definition of dementia: Dementia is a loss of mental ability severe enough to interfere with normal activities of daily living, lasting more than six months, not present since birth, and not associated with a loss or alteration of consciousness.
"I think people, including the EMA, may view early effective treatment strategies very differently if they viewed MS as a progressive dementia. Why do you think 50% of MSers are unemployed within 10 years of disease onset? Why do you think 50% of MSers are unemployed at an EDSS of 3.5; a level of disability that is not associated with physically disability? Why do 50% of CISers have cognitive impairment at presentation? Why do CISers, RRMSers, SPMSers and PPMSers have the same rate of brain atrophy? The answer is simple; MS is a dementing illness and it is time to do something about it."
"We need to reposition the early effective treatment strategy as a preventative treatment; i.e. to prevent permanent cognitive impairment and progressive MS. Scientists in the Alzheimer's field know that it is too late to treat Alzheimer's disease once you become symptomatic; you need to treat Alzheimer's in the presymptomatic phase of the disease, before your cognitive functioning is impaired to such an extent that it impacts on your quality of life and activities of daily living. Why should our strategy in MS be any different?"
"The sets of MRI studies below are from two MSers with RRMS who were followed for 18 months; please note the degree of brain atrophy that occurred during this period of time? A picture is worth a thousands words and these images tell you how damaging MS can be to the brain."
"Thoughts please on the proposition of repositioning MS as a dementing illness to drive a change in treatment strategy?"