Thursday, 12 September 2013

Are these your Priorities?

The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004. It brings patients, carers and clinicians together to identify and prioritise the TOP 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important.

This was initiated by the MS Society in the UK to set priorities for MS research important to people affected by MS and healthcare professionals. This involved 669 people affected by MS and health care professionals feeding into this process.

Are these your choices? 

You can hardly complain if you did not voice any opinions when asked! 

You all had an invitation to participate Remember in December.

What surprises me is that (stem cells) drugs in terms of remyelination where not specifically mentioned as a specific aim. Maybe, it was considered that enough resource is put in this aspect. 

But 1. is a catch all approach as it is certainly two and probably three separate questions. 
An effective DMT could address all of this and could deal with 7, 8, 9 if it stops the symptoms occurring. 

Next is a question if you deal with problems of progression then this may deal with issue of symptoms. 
Question 5 is dear to ProfGs heart let's see if time is brain and can it be stopped?. NICE can answer this one 
Is point 6 already being addressed in trials, however as many of us are taking vitamin D we could say in a few minutes if it is totally effective. If you have had a attack whilst taking the high doses recommended then it is not totally effective. Could it help? Maybe here you need a controlled trial but is it ethical to do a trial if there are alternatives. Could a nutriceutical add to the effect of a pharmaceutical? However the first question I would ask is at what stage is vitamin D supplementation essential? The data may suggest during pregnancy and beyond. Surely the Scottish Government should instigate a programme to educate mums to be vitamin D replete say in the Orkneys. 
We clearly need to do better to deal with symptoms. So EAE will be become a model for mobility, cognitive behaviour (Oh no......not mice is water maizes) and pain...so if it is not considered severe enough this will ensure that it is uber severe and ensure a more rapid extinction from these shores.
So whilst ProfG wonders whether it would affect the Charcot Project could it not be an answer to 1 and 2?...Maybe he should say "Show me the Money". The tools are already there to address some of these points.  

It's time to get your thinking cap on to work out how to address these questions!

With a sugar daddy or mummy we could clearly answer some these.
Self-management....What do you think?

2 comments:

  1. The priority should be to promote endogenous remyelination - the issues of spasticity, bladder/bowel issues, cognition, etc. will follow. Regenerative medicine will be needed but it seems alot of researchers do not want to embrace stem cell therapy. DMTs can only go so far.

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  2. This obviously was not an explicit priority in the JLA otherwise it would be more than a passing comment in point 1. Maybe the unaccustomed exerciser can enlighten us.

    Alot of researchers do not want to embrace stem cell therapy.....most researchers do not have the option to embrace and you should not have a monoculture of ideas. Remyelination does not have to be stem cell but if you don't deal with the process that causes demyelination, then the chances of effective remyelination is more limited.

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