Survey results: progressive MS

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“I am not surprised by this result; dare I use the word unanimous?”

“The lack of any disease-modifying therapy for progressive MS is generally interpreted as neglect. This is not the case; we are trying very hard to develop effective DMTs and better symptomatic treatment for progressive disease. We are definitely not neglecting you.”

“If you haven’t completed our survey on a new trial design please do; we need as many MS’ers as possible to complete this survey. Thank you.”


See previous post about the survey: progressive MS survey regarding a novel trial design

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.

16 comments

  • Prof G,

    The proof of the pudding is in the eating. It's a bit like computers – I'm not really too interested in the research etc which allows them to function – I just want them to work. Same for treatments for progressive MS. While it can look like we are ungrateful – the is a big difference between MS patients and MS researchers. For the latter MS is their livelihood, for the former MS is our lives. The lack of any real timeframe for when treatments for progressive MS may be available is also frustrating – time is not on our sides. Breaking away from the stove pipe approach to MS research and having real collaboration would help enormously.

  • I very much agree with the person above.

    Barts is just one of countless clinics/ labs developing – or trying to develop – DMTs for progressive MS. American universities seem to be even more at the forefront than here in Europe, but the situation for those living with progressive MS has not changed in the last 160 years. Not one clinic can stem the progressive effects of MS.

    The results from this survey may as well be 100% in terms of patients with progressive MS thinking doctors don’t really care about the debilitating impact progressive MS has on them. Not one person voted ‘Yes’.

    I realise that presenting timelines is not scientifically or ethically prudent, but we are not getting any better. We have not got the luxury of time. It’d be marvellous if we did.

    Managing expectations is good, but I will argue many of us almost feel like we ought to not have any expectations as far as treating progressive MS is concerned. 5 or 10 more years is too long a time for many of us. Even then there is no guarantee you’ll be able to help us.

    It’s splendid to know that the mice induced with MS-like symptoms in your laboratory are feeling perky again, but when will it be our turn? Is it better for us just to accept our fate, or should we keep on demanding more from people like you and your team? Will progressive MS actually attain successful treatments within the next few years?

  • I was hoping that the results from this survey may provoke some better news than your simple "we are trying very hard" response.

    Trying won't slow down my MS progression, only doing something about it will help me.

    You may have a shelf full of pre-existing compounds that your team supposes may work in treating MS pogression, but are you at all developing new compounds of your own making: compounds that look seriously promising in even reversing some of the damage caused by progressive MS?

  • Is it time to turn of the research on RRMS? We have treatments in the pipeline which look very effective. There must be some quick wins for progressive MS, even if only partially effective. Safety really needs to be considered in a propotionate way for progressive MS. I'll happily try a B cell depleting therapy now and pay for it.

  • Re: "I'll happily try a B cell depleting therapy now and pay for it."

    This is not the solution; we need evidence and if positive we need to make it accessible to all. The latter is one of the principles what underpins social healthcare and the NHS, which I support. Prescribing without good evidence concerning the risk:benifit ratio of a particular treatment is no different to the charlatans who are charging exorbitant fees for CCSVI treatment.

  • Then what are the alternatives Prof G?

    I'm as annoyed as what you are when it comes to MS'ers extolling the unproven brilliance of CCSV, but who can blame them? They are getting worse and the NHS can't give a tupany-fig.

    Desperation turns wise people into fools.

  • Prof G,

    Unfortunately, principles must go out of the window when faced with a future of wheelchairs and palliative care. You're a braver man than I am. I thought the NHS was promoting choice – I would choose any risk (given that severe disability is not an option I could ever face). While I'm a big fan of the NHS (A&E etc), but when I needed help for a grim disease it failed.

  • Re: "The proof of the pudding is in the eating."

    The NMSS gave us $3.2M as part of the Promise 2010 programme. As part of this programme we screened umpteen compounds and developed several novel trial designs to test neuroprotective agents for progressive MS. In fact we have come up with 3 new trial designs, which I believe all have a chance of delivering an effective therapy for progressive MS.

    One trial design has already been funded by the NMSS; THANK YOU!

    However, the most novel and interesting trial from a progressive MS perspective, using lumbar punctures and a spinal fluid biomarker as an outcome, has yet to be funded. A grant application to test our most promising compound, identified from our animal experiments, using the proposed LP trial design has received very good preliminary reviews. However, before resubmitting the grant we need to convince the reviewers that the study is feasible and that MS'ers with progressive disease are willing to have 3 LPs as part of the trial.
    We set-up a survey 3 weeks ago and have only had 113 responses. Do you think this response is good enough? I don’t think so.

    Yes, the proof is in the pudding. Without thousands of MS’ers responding to the survey and endorsing our study it is a non-starter.

    Progressive MS’ers’ complain continuously that we are not doing enough to help and when we try, we get 113 replies in 3 weeks and barrage of complaints.

    If you want something done please help us get the response rate to a 1000+. If our trial design is successful we will be able to use it to screen 10x as many drugs as we are currently doing with the existing trial designs.

    We need your help, to help you. This is a two-way street!

  • Re: "You may have a shelf full of pre-existing compounds that your team supposes may work in treating MS pogression…"

    This has been our main strategy and we have found several very interesting compounds.

    "… but are you at all developing new compounds of your own making: compounds that look seriously promising in even reversing some of the damage caused by progressive MS?"

    Yes, we have several small molecule compounds that we have developed that appear promising, but the chances of them getting through the pipeline are slim. Big Pharma know this territory best and the odds are against us. We also find ourselves spending increasing amounts of time trying to raise money to do a lot of laborious routine work, for example toxicology and pharmacology. To be honest this is best done by Pharma with the resources and money; they are more efficient than we are at developing novel compounds. Our role is to provide the drug targets, the animal models, novel trial designs and the resources including willing volunteers to do the trials.

  • Prof G,

    Complaining is something people do at restaurants. You post an article about palliative care and then are surprised by the desperation of patients who want treatments to stop disability progression.

    Now it looks as we are at fault for not responding to the LP survey in sufficient numbers. I don't think 1,000 people with progressive MS visit this site. Wby not do what lots of MS researchers have done – fiddle the figures. Just say 88.6 per cent of 1022 responders said they'd have 3 LPs. There's got to be way around all the barriers which slow things down.

  • Re: "Why not do what lots of MS researchers have done – fiddle the figures?"

    That would be research fraud; my career and reputation would be over if I did that. In addition, the survey and our blog is also about engaging people with MS with our research. We want people to be engaged and to understand what we are trying to do.

  • "Trying won't slow down my MS progression, only doing something about it will help me".

    Trying and doing is part of the same process and we are doing things! However we aware that these things progress too slowly.
    But this is usually outside our control

    "Are you at all developing new compounds of your own making"

    Yes we are but, as we have said many times before if we have the cure in our hands today, it will still take many years to get it through the drug development pipeline"

  • Prof G,

    As a serial complainer on this blog I wanted to make clear that I am grateful for all your efforts. It's just very frustrating regarding timing. In 10 years time we may have some treatments to help progressive MS, we may have answers to the big questions about the disease. But from now until then, it's a waiting game for patients not knowing how much more MS will rob them of.

  • The fact that only 113 people responded to your survey and not the 1,000 you anticipated is not the failiure of MS'ers, but more so a short-sightedness on your part Prof G.

    In order to acquire better response quotas means you have to come up with better ways of getting the attention of the MS community. 113 responses to a survey on a blog that has only 80 followers is a good turnout in my opinion.

    Why not put your survey on the MS Society's website? What the heck are Shift.ms, a pretty pointless website in my opinion, doing to encourage its followers to respond to the survey?

    You must be more inventive in your approach.

  • Re: "Will progressive MS actually attain successful treatments within the next few years?"

    If we get the trial design right, I predict yes. The problem is that our current outcome measures are not good enough for progressive MS. We are however working on a new trial designs to address this problem.

    I am also a big believer in innovation; it marches on inexorably. At some point it will deliver a treatment for progressive MS; it has to. I sincerely hope sooner than later for you and the other readers of this blog.

By Prof G

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