After my talk last week, to the MSers at the East London branch of the MS Society, I have been contemplating “life the universe and everything”; that is “life the universe and everything to do with MS”.
It is clear that despite researchers engaging with MSers at several levels there is still a disconnect between MSers and MS Researchers in what their aims, objectives and expectations are.
It also apparent from an MSer perspective that your aims, objectives and expectations change over time. For example, early in the course of the disease you may want more emphasis placed on relapse prevention and wellness and later in the course of the disease on slowing progression and improving symptoms. Is this correct?
Reconciling these under one umbrella can be difficult.
I am haunted by the experience of meeting a recently diagnosed young woman at the meeting who did not want to know about the prognosis and course of MS; she was still in denial and clearly was not prepared for bad news. I hope she is okay and getting the support she needs. Information should be drip fed and done at pace and in an environment determined by you.
In response to my experience last week I propose posting a series of “Grand Challenges” to MS Researchers; these will be what we consider the most important questions to be answered in the field. I suggest using a MSer-centric perspective and using the phases of the MS as a template:
It is clear that despite researchers engaging with MSers at several levels there is still a disconnect between MSers and MS Researchers in what their aims, objectives and expectations are.
It also apparent from an MSer perspective that your aims, objectives and expectations change over time. For example, early in the course of the disease you may want more emphasis placed on relapse prevention and wellness and later in the course of the disease on slowing progression and improving symptoms. Is this correct?
Reconciling these under one umbrella can be difficult.
I am haunted by the experience of meeting a recently diagnosed young woman at the meeting who did not want to know about the prognosis and course of MS; she was still in denial and clearly was not prepared for bad news. I hope she is okay and getting the support she needs. Information should be drip fed and done at pace and in an environment determined by you.
In response to my experience last week I propose posting a series of “Grand Challenges” to MS Researchers; these will be what we consider the most important questions to be answered in the field. I suggest using a MSer-centric perspective and using the phases of the MS as a template:
Phases of MS
Prevention
Diagnostic phase
Minimal impairment phase
Moderate impairment phase
Severe impairment phase
Terminal phase
I would appreciate proposals around these phases before setting-out our stall. Thanks.
There are lots of issues here, Prof G.The way you structure it seems rather like a terrifying death sentence of progression – minimal, moderate, severe, terminal. No wonder the woman who you spoke to didn't want to engage. She wants you to say: "Don't worry, with Avonex, Tysabri and good diet you'll be Minimal'. And ou can't say that.So us as MSers are faced with a painful and long road that seems too definite and awful to even begin to comprehend. It seems that the real issue here is in terms of your ability as a neurologist to give evidence based long term prognosis. The big studies that have been done seem, if I am right, include data about people who were diagnosed and progressed before DMDs really took off… so when you read on PubMed things like 'after 15 years 72% of people with MS had some walking aid' the question is – does that mean in 15 years time I have a 72% chance of walking with an aid? Or because I am on a new DMD does this mean I have 20 years? If at the end of the day DMDs do not halt progression. If the impact of all these drugs and trials is mainly anti-inflammatory and that the hard truth is we as MSers will end up wheelchair bound with incontinence issues and cognitive failings…. do we even want to know this? In the First World War they used to throw a football over the top of the trench when the big push came. Not because the soldiers wanted to exercise. But because it was easier to concentrate on the football than on the wall of steel ahead of them.There are two points then:1. Yes, people want to know what the future might hold – but if you can offer no solace, no sense that you have more than a fighting chance… then perhaps you'll just reduce people's overall sense of happiness.2. On the other hand – people have a right to be informed. I think you are right to address the starker issues, but you need to, perhaps, address issues like:1. What can I do now to help protect myself from neurodegeneration?2. Will exercise, diet, help maintain a moderate level of illness and slow progression?3. What options do I have – both in the NHS and in alternative treatments – to make any differences in health outcomes?These are the key issues. People turn to things like bee sting therapy or CCSVI not because they are stupid, but because these three main questions are not met by their health providers. They feel isolated. The one thing I'd like to know, for instance, is – why is there not more of an individualised consultant decision to treatment? Should we be matching Avonex with people with certain IL-10 profiles? Or people on Tysabri with a raised T2 cell count? Perhaps there are many different MS routes to maintaining a modicum of health, and the one drug fits all approach isn't ideal.The eye looks down at the 'Terminal Phase' as if it was determined. This is how your world will end, sort of thing. And that's pretty terrifying.
Iain O, I totally agree, especially as my interest was piqued and I thought 'great' only to be presented with that lovely pyramid leading to 'Severe impairment' and 'Terminal' phases – no wonder people are in denial. The best thing a neurologist said to me, early on, was 'most people manae well' – that has sustained me and luckily for me has proved to be the case. Nearly 30 years after that conversation I am still mobile (with some difficulty), have raised a family and am working full time. Surely it must be time to retire soon!
Re: "The eye looks down at the 'Terminal Phase' as if it was determined. This is how your world will end, sort of thing. And that's pretty terrifying."Let me remind you that life is sexually transmitted disease with 100% mortality; in most people Life has a terminal phase as well – typically 3 years. What we are trying to do is prevent it being due to MS.
Prof G, as someone with PPMS, I find it hard to simply accept my fate in such a laconic manner. I know death will come to us all, but what sucks is that most of my young adult life has had me suffering with MS, and to just edge away into the ‘severe’ and’ terminal’ phases of MS without any such thing as a 'good' treatment is highly upsetting.If MS is so bleak then we should have the option to choose our right to die before it become intolerable. Having neurologists say that they're unable to support euthanasia on moral grounds is unacceptable, especially when they are unable to offer many of us effective therapies.
I side with Iain O – very good points. It's time for individualised care and instead of banging about death more endeavour should be put into development of biomarkers which would predict progression.I for once have very mild forms of autoimmunity (e.g. thyroid – not even confirmed 100%) – this mildness runs in the family. Obviously 'benign/severe MS' is in the genes.
The notion of suffering for a lifetime and then just dying is not fair. I've had bad MS since my twenties and may live much longer in discomfort.I agree that clinicians should be trying to treat all forms of MS rather than focussing on its terminal impact.Do your jobs! What are you being paid for?
"Do your jobs! What are you being paid for?"Well I'm paid to find new drugs to treat all stages of MS, particularly those that can slow progression.We realise that progress can never be fast enough for you but believe me great strides are being made.
Prof G,You're right – we all die. But you don't have to live with an image of Debbie Purdy in your mind and wondering how you can end it all before it gets too degrading.You are always brutally honest e.g. MS is a Bad Disease. Over the last year or so all the posts have been pretty depressing – MS takes years off your life, higher rate of divorces for people with MS, unemployment higher for people with MS etc etc. These observation studies are a waste of time – we all know this as we live with the disease. Surely there is some research underway to stop neurodegeneration or to promote repair. Ask us what we want and we'd say "not to become more disabled" or "to see a reversal of damage". Why do we waste time an energy on studies which find that "MSers who can't walk more likely to be depressed".Imagine if you couldn't run again. It's pretty grim. You'd want repair. Surely some research scientist can set their goal to achieve this.It's 2012 and the progress made so far has been diabolical. You've always been honest with us and it's important that we are honest with you. I pray that you never get a neurological condition and feel as let down as I do.
Re: "Having neurologists say that they're unable to support euthanasia on moral grounds is unacceptable, especially when they are unable to offer many of us effective therapies."Is this one of the grand challenges?
Prof G,There's a massive gap between the doctors/researchers and MS patients. It's easy for you to come up with a graphic e.g. The pyramid above. To you we are numbers in a trial, a number on the EDSS scale, an appointment time in the clinic appointment diary. At the population level our life will be 10 years less than the average, more likely to be depressed, more likely to commit suicide. At a personal level we are husbands, sisters, fathers, friends. I certainly wouldn't want to show my 8 year old daughter the pyramid as she'd ask some difficult questions. Not that I'm in denial, but I want to protect her from the horrors to come. My request – less blog, more lab. Get on with the EBV trial, get on with the spinal tap study. I can live without blogs, MS news and information. What keeps me going is the hope that an MS researcher somewhere will deliver the goods and change our futures.
Re: "Get on with the EBV trial, get on with the spinal tap study. I can live without blogs, MS news and information. What keeps me going is the hope that an MS researcher somewhere will deliver the goods and change our futures."EBV grant went down; we now have to generate some data on correct dosing etc. We are still waiting to hear about the spinal tap grant; we will hear in late August.
Prof G, I know we all die. That's a given. But there is a difference between being able to live a long and full life until you are 74, then to develop a cough, and for you to shuffle off this mortal coil at 76 with your family around you.But here we are talking about people who develop the symptoms of a disease in their 20s and 30s.Dying at 76 in the above way, you leave a legacy. MS is a disease that can kill the legacy that you might have had the potential to leave. Your partner might leave you. Your children might only remember you as the sad, limited person that was never the shining light that they remember their friends fathers and mothers. All because of MS.Regarding the other posts – I think it is unfair for people to attack the likes of MouseDoc or Prof G, though. If there was an easy way to cure this disease, surely these men of science, these campaigners of clinical enterprise, would do it – and I don't think it is fair to say that they cannot empathise with MS because they don't have it.The point I think I was trying to make, Prof, is this.You say (I think) you want to know what people with MS want to know about their disease and their future.What they want to know is this: is there hope? If so what hope is there?Personally I think there should be a clinical trial that puts 100 people with MS on alpha-lipoic acid, idebenone, 10,000 iu Vit D daily, trans-ferulic acid, minocycyline, vitamin B complex, a low fat diet and LDN. And the other 100 on placebo. Then come back in a year and see what progression the former has versus the latter. I would bet hard money that the latter would have much greater disease development. But none of the drugs I mention above are on NICE recommendations. Why? Because a). they can't be patented. b). this means there is no funding to trial (most of) them and c). trials are usually only based on looking at one drug, not combinations.We know that the causality of MS is down to a wide range of factors. So why not the treatment? You ask what MSers want to know. The hard truth is this: how to get rid of their disease. Perhaps we need to be bolder, braver to find a way to this end goal – not just you as physicians but all of us.The gay community in the 80s transformed work on virus research as AIDS killed thousands of young men. Ironically, those same drugs could – if the Charcot theory is true – inhibit viruses that contribute to MS decline.What we need is more anger (but not focused at neurologists) but at a scientific community that has, burdened with protocol and form filling, moved away from experimentation that produces tangible results.You may say this isn't true… but BG12 has had a Phase III trial that has shown it is so much more efficient than the old style DMDs. But can you get BG12 in the UK? No. If this was an HIV drug and this was New York 1990 you could bet your bottom dollar there would be protests in the streets.What do I want? I want you to be angry. Not at us, but for us.
Prof G said: "EBV grant went down" – does it mean that the Charcot Project is history now or am I lost in translation?
I'll say it: it pisses me off when you talk about prevention. I imagine in the same way that it pisses people with PPMS off when you only talk about RRMS. The worst thing you could do for the people who already have MS is figure out how to prevent MS.It would be much more helpful if you figured out a way to infect rich celebrities and dignitaries with MS. I'm not saying it would be the right thing to do, but it would really help.Recently a popular blogger talked about Jack Osbourne being diagnosed with MS. His point was that a Jack Osbourne was nice but someone more like a Michael J. Fox would be better. We already have a hard enough time trying to get doctors to really and truly pay attention to us, if you start treating patients that don't even have the disease yet then we're screwed. I don't want anyone to get MS, but I'm pretty sure if you figured out how to prevent it tomorrow it would be a huge blow to all of your patients and readers. Even talk of prevention could influence policy makers to allocate less money to cures.With the science of MS being such a mystery still, focusing any amount of energy on prevention seems at most impracticle and at worst grossly uncaring and extremely wasteful of research dollars.
Reaction to some of the reactions–Life is not fair. MS is horrible but MSers arent the only people to whom horrible things happen-If blogging happened at the expense of the research, i'd obviously say stop blogging. But that isnt the case, and the blog is a major kindness.-Prevention is important. Yes, it may reduce the effort going into finding a cure. But MS is horrible and I dont want my children or grandchildren or anybody else to get MS. And it may just happen that a cure and prevention come together after getting to the cause-Prof G and MD cannot think of MS in the same way as someone who has the disease. Even people who have MS dont all think of it the same way. Somebody who is bedridden after 10 years has nothing in common with somebody working and walking after 30 years
'EBV grant went down' What does that mean?
Grant went down what does that mean?.The idea for the grant was rejected and the study does not get funded. This means the idea does not get tested and you move on.Alternatively you modify the application and try again this is the usual way forward in the US where the grant prosess is more constructive, in the UK that is usually end of the line.You go somewhere else of find some other way to fund it or you wait and try it again or you just drop the approach.Team G tried to get a number of initatives for progressive MS off the ground in the early noughties. All applications fell on deaf ears and blind eyes. Six years later many of the very things we were proposing six years earlier get supported..alas to other groups.Six years wasted?..Perhaps. However that is the nature of Research unless you have some benefactors letting you do blue sky stuff.Does it mean the Charcot project is history…No we dust our self done, rant about the short sightedness of the reviewers and the review process and try again once we have done some more work.However the EBV story is just one paprt of the project and just as you can get bad news sometimes we get good news but thats for another day
Awwww, sorry to hear about the rejection MD! No wonder you rant, I join in! However, you are our Dream Team so keep going on……..How about contacting Ozzy Osbourne (I mean, seriously) and convince him to do a fundraiser or something??
It was the Prof G's grant (G and G down under), so it was they who are ranting, I'm just sympathising.Re the Osbournes I am sure they are putting money into the lab in LA. I have found Sharon O's Agency…balls in Gs court.Metal here we go
Oh no oh no oh no about the grant refusalBack to the original post: i'm not sure i understand what sort of suggestions Prof G wanted from us.
Re: "i'm not sure i understand what sort of suggestions Prof G wanted from us."It looks as if education may be the number on grand challenge; getting scientists and MSers to understand each other and the unmet needs in MS.
Re: "I'll say it: it pisses me off when you talk about prevention."Matt, do you have siblings, children or even an extended family with cousins etc. I am sure you would not want them to get MS. Simply by being related to you they are at increased risk of developing MS. Prevention should not detract from finding a cure or more effective treatments for MSers. if I had my medical career again I would probably become a public health doctor. The biggest impact you can have on MS is at a population level by preventing it. I know that this would frustrate MSers with the disease, but the health benefits of prevention make so much more sense that treating a disease. A good analogy is smoking and disease; the biggest impact you can have on smoking-related disease is to stop people smoking in the first place.
Sorry to learn of the declined grant. Sent Gavin an email today boasting my success with anti-virals over 30 years. I've led a completely normal life with MS – cannot say the same for my fellow MSers.