I had many requests for my #ECTRIMS2019 ‘Hot Topic’ slides on ‘what remains to be achieved from DMTs’. You can download the slides from my SlideShare site.
My message is blunt and to the point. Let’s not let ourselves be lulled into a false sense of security with our current crop of DMTs. They are simply not good enough. If we want to ‘maximise the lifelong brain health’ of MSers we need to do better; much, much better than what we are currently doing.
In my presentation I made the case for new treatment approaches in particular combination therapies and a true induction strategy, i.e. an induction therapy followed by a maintenance or consolidation therapy. I also made the case for making our current DMTs safer and promoted the holistic management of MS using the principle of ‘marginal gains’.
I didn’t pull my punches and questioned if we have equipoise when it comes to randomising MSers to an escalation or high-efficacy (flipping the pyramid) treatment approach.
CoI: multiple
GAVIN
You say your message is blunt and to the point.
WHO is the they?
WHO is it aimed at?
WHO might be listening?
WHO can WE as people with MS speak to and tell them WE don’t think things are good enough either?
WHO will listen?
TELL US what WE should be saying and WHO we should be saying it to
PLEASE
What remains to be achieved?
– Definite proof of all causes. No longer calling them ‘a mystery’.
– Preventive measures eg vaccine against herpes and Epstein Barr virus and taking vitamin D.
– Treatments for Secondary Progressive MS.
– Neurologists pro-actvely putting forward lifestyle changes especially diet and exercise as valid managements of MS. This requires acknowledgement that not all solutions to MS are medical. Saying ‘eat a balanced diet’ doesn’t cut it. Two doctors with MS, Professor George Jelinek and Terry Wahls MD, have both written excellent, prescriptive books about what to eat and not eat. They and many of their followers are symptom free. These books and protocols should be suggested to patients by Neurologists. These can be suggested alongside DMTs for eligible patients, and highlighted to those not eligible.
– More research into diet and messed up microbiome as potential causes of MS. In Japan the incidence of MS has gone up dramatically in recent years. Nothing has changed except what they eat. The Japanese professor who did this research attributes the rise of MS to the increase in eating a Western diet and fast food.
Re: ” Two doctors with MS, Professor George Jelinek and Terry Wahls MD, have both written excellent, prescriptive books about what to eat and not eat.”
Unfortunately, these two approaches are not evidence-based hence difficult to promote. In a Medium post I address some of the issues in relation to diet.
https://medium.com/@gavin_24211/what-diet-ff0867fdca06
Dear Professor,
You endorsed George Jelinek’s book – your name is on the inside front cover. His book is based on scientific research. All the references are there. Also, there has been recent, positive research on Terry Wahls MD’s Protocol which has been published in peer- reviewed medical journals. So how can you say there is no scientific evidence? Making changes to the diet seems to be the main lifestyle intervention ( and exercise) that has a measurable effect on MS symptoms, particularly fatigue. This is too important to dismiss.
Yes, but I have never endorsed the diet. I was a little disappointed when my endorsement was taken out of context. Please see my previous post on this specific issue.
https://multiple-sclerosis-research.org/2017/04/thinkspeak-brainhealth-just-do-it/
What remains to be achieved? That cannot be a serious question! [Series of expletives.] As someone with longstanding slow PPMS who has access to no treatments, who sees no prospect as yet of anything satisfactory on the horizon.
I’d surprised if the average medical professional even knew what equipoise meant.