Sunday, 18 March 2012

Failing MSers with progressive MS


I was kindly asked to give an update to members of the Redbridge Branch of the UK MS Society, at their annual general meeting, which was held at the Marjorie Collins Day Centre, in Chadwell Heath, yesterday (Saturday, 17th March, 2012). The members were very appreciative. 


I do these types of talks often; they allow me to connect with MSers in the community and to see the type of day-to-day battles MSers have to fight to maintain local MS services. These battles are very different to one we fight in hospital-based practice. For example, they are particularly concerned with the closing down of their local MS clinic and the loss of their local MS clinical nurse specialist who has moved to the regional centre. As a result of this MSers now have to travel a long way to receive neurological care. I now know why delivering care in the community is so important for MSers. 


I started my talk by highlighting the unmet need in MS and spent most of the time updating the audience about the emerging DMTs (both oral and parenteral). I soon realised that the audience was mainly made up of MSers with progressive disease who would not have access to these treatments as all the trials were being done in relapsing disease. The only good news I could give them was about the fingolimod and ocrelizumab PPMS trials. 


I also spoke to them about the need for better trial designs for progressive MS and described the study design we are promoting using frequent lumbar punctures and neurofilament levels as an outcome measure. They were very interested in this and several MSers wanted to volunteer for the trial if it gets funded. This is reassuring; I am convinced we will not have problems recruiting for a trial that has multiple lumbar punctures as part of the trial design. 


Finally, I concluded with symptomatic treatments focusing on Sativex (oral cannabis spray), for spasticity, and Fampridine, to improve walking speed. I showed them two examples of MSers who had responded well to Fampridine. The bad news is that the Redbridge PCT or funding Commissioners recently turned down our application to use Fampridine in MS. The panel were unconvinced with the primary outcome, which is the timed 25-foot walk. They don't think an improvement in walking speed over 25 feet is clinically meaningful. How does an improvement in the 25-foot walking speed translate into improved quality of life for MSers? They are particularly interested in knowing whether or not Fampridine prevents MS-related falls. We simply don't have this data at present.  


At the end of the meeting one MSer, who was particularly cynical about MS researchers, wanted to know why we hadn't cured MS with all the money that had been spent on research over the last 30 years. A difficult question that I had a go at answering. The meeting made me realise how few MSers, are aware of developments in MS research, and how few read this blog.We clearly need other means of communicating MS research. Any ideas? For example, should we take the most popular posts and edit them into a concise booklet for distribution via local MS Society branches? Should we launch an advertising or marketing campaign to get more MSers to read the blog? Or should we do nothing?

16 comments:

  1. Prof G,

    I respect the work you do in the community.

    I'd put a case for doing nothing. Treatments for progressive MS are a long way off. When they arrive then the neuro's office / MS nurse can let their patients know that they are available.

    In reality, those with progressive MS are interested in repair and neuro-restorative treatments are still science fiction.

    If I was an MS neuro I'd be excited that in the next 3 years you can really make a massive difference to those with RRMS - perhaps even shutting off the disease. For those with progressive disease - I can't see the position really changing much in the next 5 years.

    Keep up the good work.

    Can we expect any interesting trial results this year? Cannaboids (cupid trial), anti-lingo anti-body.

    ReplyDelete
  2. You forgot about the dronabinol phase III, the tysabri trial (ASCEND) and then there are the smaller scale studies such as the simvastatin and riluzole and the amilioride and the phenytonin trials, etc. and also and what about STOP MS (which we can not talk about), which is hopefully just round the corner.

    So it is not all doom and gloom there is now a major focus on progressive MS. Whilst there will be failures just as there has been in the past and it takes time.

    ReplyDelete
  3. "Maybe we should put most popular posts in a booklet".

    The most viewed Post

    Wednesday, 9 December 2009
    Liberation therapy - CCSVI

    After the rant of Prof G and the ensuing vitreolic response from a number of CCSVIers (Hopefully Prof G will not use the term CCSVI'ers or we could be in round two from Joan). Do we want to write a booklet on this, no we should not...asking for trouble.

    I did write to MS Society about writing something on "The Game" but not response for MS matters.

    ReplyDelete
  4. "How few read this blog"

    Search "multiple sclerosis research" on google

    we are way done the list behind
    www.MS-research.org.uk.

    More people should read the blog. If we do nothing.....you get surveys of 100 responses, from 800 a day hits.

    ReplyDelete
  5. Mouse,

    It wasn't my aim to be doom and gloom. Just being realistic.

    What is STOP MS? Is this the Charcot Project?

    ReplyDelete
  6. "I would put the case to do Nothing".

    I do not agree

    The more people that read the more variety of views that you get, many of the successful blogs just have moderators and the bloggers debate the posts

    The blog is not for a select group of people with MS. It is a blog for all and it aims to discuss all aspects of research the good and the bad. It also aims to have a focus on our research.

    Much of what we have been doing for the past ten years has been focused on PPMS.

    So with this in mind all we would not talk about about RRMS much except to describe the trials that we are involved in.

    What has out research done, well the dronabinol (THC) was based on the ideas from our research published in 2003. If that works you have a drug within a year or so.

    The optic neuritis trial design to look for neuroprotection came from work that we did as part of promise 2010. Did that promise deliver trials..yes it did.

    The STOP MS (a working title) project has already been over 5 years in the planning. Its aims are firmly in treating progressive MSers. Can I say more, no not yet, because until all the pieces are in place, it could all come tumbling down. But let us hope that there is an announcment soon.
    This is not the Charcot Project

    There are international task forces set up by the various international MS Soceities that are working together to bring treatments to progressive MSer

    There is lots going on behind the scenes. I knwo it is frustrtingly slow.

    ReplyDelete
  7. I have told many people about this blog but I don't think anybody has become a regular reader.

    Some guesses why so few read it

    -People are not interested in science or research unless it has immediate relevance.

    -Reading the blog requires a lot of time and concentration. It is quite difficult. My scientific knowledge is about average for a layperson and I read every post but there is a lot I do not understand.

    Today's post on inflammation and nerve signalling is an example of both problems.

    ReplyDelete
  8. I love not being talked down to, and the comments at the end of the blog often explain the science's relevance in a way it can be understood by all. I just worry that opening the blog up will lead to more of the CCSVI lobby appearing and bringing that up on every blog.I know a US blog was ruined by this

    ReplyDelete
  9. "I would put the case to do Nothing".

    I too do not agree with this suggestion.

    Regular updates to the MS Society which, with their assistance could perhaps be forwarded to each local group, could potentially really get the message out there and get people talking. Local groups are aware of their members abilities and at the meetings I have attended there has usually been opportunity for general discussion. As for hoping that the MS nurses will pass on the message, although in an ideal world this would happen the world, as most of us know it, is not ideal. MS nurses are not available everywhere, their workload is immense and in my experience, such is life, some are far more accomodating than others. I’m sure I’m not the only person in the UK who has, at times, had to batter doors down to get information.

    I am always surprised at the number of MSlers who, although wishing to hear of developments, do not read the blog for various reasons if, that is, they are even aware of its’ existence. From what I have understood specifically MSlers with the progressive form, but also those with RRMS, have given up on reading reports that may or may not specifically help them. I see this not as dissinterest but as a form of self preservation.

    ReplyDelete
  10. I read this blog often, and as a PPMS sufferer this is one, if not the only place, that this strain if the illness is acknowledged!!

    The MS Society is almost useless, they are only interested in fundraising to pay for their nice offices and lavish meetings at expensive hotels. Most people "running" groups or working for the society do not have MS, and in many cases merely see this as a way into heaven!!!

    RRMS is always going to be a favoured strain as results for its treatment can easily be seen, and let's not detract from the fact that these steps forward are brilliant, but because of these steps PPMS is ignored a lot under the guise, that is used a lot, that if you ignore something enough it goes away.

    There are developments here that are previously unheard of, so how are they publicised??

    I say shout them from the roof tops, tell the media, send blanket emails to all of us, if it helps us the MS Society, maybe if you bang on this door enough eventually it opens a little, and also get some public figures behind these developments.

    They are in danger of being lost, that is a crime, so right now, use every avenue possible, to tell EVERYONE these exist because to some of us they are the stick a drowning man will clasp............

    ReplyDelete
  11. As someone who recently found this site I say publicise as much as you can. It's empowering to know what is going on in the world of research.
    Partnership between the worlds can only be positive and bring about greater understanding on both sides.
    The discussions following the articles are really important - you don't have to read every article and you don't have to understand it all for it to be valuable.
    It is so refreshing to not be spoken down to. How many people conceal knowledge they have about their MS when with doctors or nurses because of the barriers created by the power play in the relationship?
    People need to feel they can ask for treatment that is out there in some places and not others -.
    All too often the various MS'societies' are too precious and conservative in their approach.

    ReplyDelete
  12. Prof G,

    Your post on PPMS and the comments in the least paragraph raise a number of issues.

    Not every person with MS is keen to follow the latest research, or more pertinently can understand it. At least the summaries that you and Mouse provide are comprehensible, and your comments about the said research worthwhile.

    I receive approximately 18 plus abstracts from various sources which cover the broad areas of MS – I do not restrict myself to neurology, but rehabilitation, brain, nutrition, CCSVI, exercise to name a few. As I am a postgraduate student all of the relevant literature is available to me in full should I wish to read it. I am an avid reader of MS material and have been since this illness decided to appear uninvited in my life. I am also lucky to have undertaken research undergraduate degrees, which gives me a reasonable understanding of statistics – another issue for the non MS person. I do belong to MS groups social networks groups, some of which are inspiring others down right depressing.

    Of course there is frustration at the apparent lack of progression to cure, treat or repair this illness, given the huge amount of money thrown at it. And as you have clearly seen, this allows the way for every crackpot theory or snake oil salesperson to proffer hope. Those who support CCSVI have shown how powerful, fearless and unrelenting a group can be in pursuing a treatment. An aspect of some CCSVI spruikers is the absolute loathing and bad mouthing and blaming of neurologists – this I cannot condone. Nor will I dismiss CCSVI entirely, there are some facets of it that may in the end shed light on the vascularity of MS.

    I note your mention of Sativex in the post – where I live, Australia, this drug is still straggling through the approval process over a year after the application was lodged. There is that discrepancy between which countries will approve which drugs, so although one country might give a big tick the other won’t and hopes to go on the treatment will be deflated. Add to that the overkeeness of drug companies to get a drug to market before the appropriate testing has been undertaken in sufficient (non-selective) samples before problems occur nb, Tysabri and Gilenya.

    I find myself posting many of the abstracts I receive on social networking sites –mostly MS groups and explaining where necessary. These include some of your material. But as I indicated previously some are interested in what is happening, others just prefer to woe about their circumstances.

    Editing your material to local network branches doesn’t really help those of us who live in much more delightfully warm and amenable locations than your own. If you want to advertise – I think the web is the place to attempt it. I think your poll did indicate a slight preference for Facebook, and I would encourage that or perhaps a page on Google+, but then that detracts from your real day job of helping and researching MS. I like your Blog - that is what you need to promote in my view- or arrange to have the same material upload to Facebook. It just depends whether you want to stay local or go global.

    ReplyDelete
  13. is there a facebook site linked to this? i know that there is a FB site for the so called "CCSVI Lobby" they get lots of clicks and comments.

    twitter,fb, google+ all the hightlights of the blogs posts with a full link to the complete blog post.

    I only ran in to the so called CCSVI lobby today as Iam doing a bit of research on prof g. I have only met him recently and i must say that some of their posts made def made me wobbble about all this dmd trials.
    (and no i am not part of any lobby.....yet :))

    ReplyDelete
  14. I posted this earlier today. No replies and I can't see the post - I have made 6 attempts at posting in the past few days - none of the comments have appeared. I think it is a problem with the blogger link at your end. I have saved this post and I will keep reposting it until I can see it and it is answered. I posted it under this heading about 16 hours ago. So here we go AGAIN!



    Your post on PPMS and the comments in the least paragraph raise a number of issues.

    Not every person with MS is keen to follow the latest research, or more pertinently can understand it. At least the summaries that you and Mouse provide are comprehensible, and your comments about the said research worthwhile.

    I receive approximately 18 plus abstracts from various sources which cover the broad areas of MS – I do not restrict myself to neurology, but rehabilitation, brain, nutrition, CCSVI, exercise to name a few. As I am a postgraduate student all of the relevant literature is available to me in full should I wish to read it. I am an avid reader of MS material and have been since this illness decided to appear uninvited in my life. I am also lucky to have undertaken research undergraduate degrees, which gives me a reasonable understanding of statistics – another issue for the non MS person. I do belong to MS groups social networks groups, some of which are inspiring others down right depressing.

    Of course there is frustration at the apparent lack of progression to cure, treat or repair this illness, given the huge amount of money thrown at it. And as you have clearly seen, this allows the way for every crackpot theory or snake oil salesperson to proffer hope. Those who support CCSVI have shown how powerful, fearless and unrelenting a group can be in pursuing a treatment. An aspect of some CCSVI spruikers is the absolute loathing and bad mouthing and blaming of neurologists – this I cannot condone. Nor will I dismiss CCSVI entirely, there are some facets of it that may in the end shed light on the vascularity of MS.

    I note your mention of Sativex in the post – where I live, Australia, this drug is still straggling through the approval process over a year after the application was lodged. There is that discrepancy between which countries will approve which drugs, so although one country might give a big tick the other won’t and hopes to go on the treatment will be deflated. Add to that the overkeeness of drug companies to get a drug to market before the appropriate testing has been undertaken in sufficient (non-selective) samples before problems occur nb, Tysabri and Gilenya.

    I find myself posting many of the abstracts I receive on social networking sites –mostly MS groups and explaining where necessary. These include some of your material. But as I indicated previously some are interested in what is happening, others just prefer to woe about their circumstances.

    Editing your material to local network branches doesn’t really help those of us who live in much more delightfully warm and amenable locations than your own. If you want to advertise – I think the web is the place to attempt it. I think your poll did indicate a slight preference for Facebook, and I would encourage that or perhaps a page on Google+, but then that detracts from your real day job of helping and researching MS. I like your Blog - that is what you need to promote in my view- or arrange to have the same material upload to Facebook. It just depends whether you want to stay local or go global.

    ReplyDelete
  15. Helen Scott has left a new comment on your post "Failing MSers with progressive MS":

    I posted this earlier today. No replies and I can't see the post - I have made 6 attempts at posting in the past few days - none of the comments have appeared. I think it is a problem with the blogger link at your end. I have saved this post and I will keep reposting it until I can see it and it is answered. I posted it under this heading about 16 hours ago. So here we go AGAIN!



    Your post on PPMS and the comments in the least paragraph raise a number of issues.

    Not every person with MS is keen to follow the latest research, or more pertinently can understand it. At least the summaries that you and Mouse provide are comprehensible, and your comments about the said research worthwhile.

    I receive approximately 18 plus abstracts from various sources which cover the broad areas of MS – I do not restrict myself to neurology, but rehabilitation, brain, nutrition, CCSVI, exercise to name a few. As I am a postgraduate student all of the relevant literature is available to me in full should I wish to read it. I am an avid reader of MS material and have been since this illness decided to appear uninvited in my life. I am also lucky to have undertaken research undergraduate degrees, which gives me a reasonable understanding of statistics – another issue for the non MS person. I do belong to MS groups social networks groups, some of which are inspiring others down right depressing.

    Of course there is frustration at the apparent lack of progression to cure, treat or repair this illness, given the huge amount of money thrown at it. And as you have clearly seen, this allows the way for every crackpot theory or snake oil salesperson to proffer hope. Those who support CCSVI have shown how powerful, fearless and unrelenting a group can be in pursuing a treatment. An aspect of some CCSVI spruikers is the absolute loathing and bad mouthing and blaming of neurologists – this I cannot condone. Nor will I dismiss CCSVI entirely, there are some facets of it that may in the end shed light on the vascularity of MS.

    I note your mention of Sativex in the post – where I live, Australia, this drug is still straggling through the approval process over a year after the application was lodged. There is that discrepancy between which countries will approve which drugs, so although one country might give a big tick the other won’t and hopes to go on the treatment will be deflated. Add to that the overkeeness of drug companies to get a drug to market before the appropriate testing has been undertaken in sufficient (non-selective) samples before problems occur nb, Tysabri and Gilenya.

    I find myself posting many of the abstracts I receive on social networking sites –mostly MS groups and explaining where necessary. These include some of your material. But as I indicated previously some are interested in what is happening, others just prefer to woe about their circumstances.

    Editing your material to local network branches doesn’t really help those of us who live in much more delightfully warm and amenable locations than your own. If you want to advertise – I think the web is the place to attempt it. I think your poll did indicate a slight preference for Facebook, and I would encourage that or perhaps a page on Google+, but then that detracts from your real day job of helping and researching MS. I like your Blog - that is what you need to promote in my view- or arrange to have the same material upload to Facebook. It just depends whether you want to stay local or go global.

    ReplyDelete
  16. "At the end of the meeting one MSer, who was particularly cynical about MS researchers, wanted to know why we hadn't cured MS with all the money that had been spent on research over the last 30 years. "

    Perhaps there is no cure yet & there won't be one in the foreseeable fututre because there is too much money being made from MS.
    Just imagine the massive unemployment that would be caused by a cure for MS.
    I personally don't believe there there is any real true will for the cure of any major disease as too many people make too much money off them!

    ReplyDelete

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