The MS Life presentations are now available to view online. I thought Professor G's effort was excellent and very informative.
An excellent and very interesting talk by Professor Gavin Giovannoni. In rough summary (giving approx times):
- the research community is aiming to reduce frequency & severity of relapses and thus delay the onset of disabiity (and the progressive phase of the disease)
- they can now check antibody levels to see whether those on drugs are amongst the 40% who are non-responders and need to come off a particular drug and switch to another - this is important, because being on the wrong drug can do loads of damage
- natalizumab / tysabri can work really well but carries big risks. They're better at identifying those who may get PML, and know that risks increase a lot after 2 years, when switching to another drug may be a good option
- emerging drugs include the first licensed oral drug, fingolimod, which can actually slow brain shrinkage [that came up later]
- research community criticised for failing to provide help for progressives
- how to find out about trials on the go (and keep expectations in check - there are no restorative therapies)
- the trial process - Prof G is trying to promote a speedier process
- very interesting bit about predicting disease speed by testing protein levels
- lumbar punctures can identify these levels
- lumbar punctures can be much easier these days using expensive (£7.50) atraumatic needles and sonar detection (versus 20p needles normally allowed by the NHS, charming)
- woohoo, we can all volunteer to help out in these ultra speedy trials to get things moving on progressive research
- brain shrinkage gets us all, even with relapses being slow - fingolimod has been shown to reduce shrinkage
- more work on neuroprotective drugs needed
- interesting bit about optic neuritus
43 minutes: conclusions summary
- future research goals includes prevention of MS in the general population through modification of environmental factors
- exercise is good for PwMS, but avoid overdoing it massively during relapses
- vitamin D is good, but speak to your own medical team about it
A very interesting video imo. It must be your turn to get the popcorn for the next one.
Nice summary. I thought there was some genuinely new information in the presentation and it made a refreshing change from the same old recycled stuff we usually get.
I take my popcorn without salt, or sugar. Is that ok?
Excellent summary thanks.
I wonder are all neuros singing from the same hymn sheet -- should we all be having tests for protein/antibody levels.
Prof G’s an MS specialist, so has his MS views. I don’t know whether every other MS specialist neuro would agree with everything he says, though he does make an awful lot of sense.
If you’re RRMS (relapsing remitting) and are on a DMD (disease modifying drug) but are still having relapses / deteriorating, then you might want to ask your neuro for an opinion as to whether that particular DMD is working for you and whether tests would be useful.
Anybody ‘volunteering’ for a lumbar puncture now should be demanding an atraumatic needle (heck that’s gotta be worth paying £7.50 for) and sonar (if available), so that the protein predictor levels can be checked with minimal risk of accident or discomfort. In Sweden, ‘normal’ people volunteer for lumbar punctures, which is how they found out about these proteins.
Points missed from my summary due to bad handwriting:
neuros are constrained by NICE otherwise they could prescribe DMDs after one episode, now that they know that DMDs work best when started earlier [this is a clear message to newly diagnoseds imo - take the first offer you have to get on a DMD, unless you’re going down some other route]
DMDs are now being compared against one another
MS is a serious disease [lol!!]
there are loads of trials underway for secondary progressive and primary progressive [summat like 60 SPMS and 90 PPMS]
Thanks for summary Lolli, will try and watch video soon.