Thoughts from my day at the “MS Life” meeting in Manchester

Several MSers voiced their concerns about the lack of progress in relation to progressive MS; this mirrors the poll results.

The politically enlightened were outraged by the Chancellor’s proposed cut on tax relief on charitable donations. This is not surprising considering how much charitable giving occurs in the UK. It is clear the charities are having a tough time.

A large number of MSers are angry about the spiralling costs of medications and feel that Big Pharma is being greedy. I supported Big Pharma in my debate and tried to explain why drugs are so expensive. I doubt I was effective and my position will probably backfire with readers accusing me of being in the pocket of pharma. I would, however, advise Pharma to run a public engagement programme to explain their pricing strategy and get the community on side. If not this issue will continue to escalate; MSers have shown that they can be militant so the consequence of non-engagement could be very interesting.

Despite efforts such as “Meet the Scientists”, our “MS Research Days” and this blog the majority of MSers I spoke to yesterday don’t understand the complexities of MS, in particular the difference between the pathogenesis of relapsing and progressive MS. It is clear we need more education that is pitched at the right level.

I was reminded yesterday that I take too much of my knowledge for granted. I will try and change this position.

MSers and their families were very grateful and appreciate the efforts we made to come to the meeting. More should do it!

MS services across the country remain patchy. For example, one MSer was unable to be assessed for functional electrical nerve stimulation or FES for her dropped foot; apparently her local PCT don’t pay for FES. It is obvious that post code prescribing is still alive and kicking; kicking poor MSers.

A large number of MSers on disability benefits are being reassessed and are being threatened with benefit cuts. One medically retired teacher was told that he should go back to teaching. This was clearly ridiculous when it was clear that his cognitive problems would prevent him from being an effective teacher.

The CCSVI lobby was small and relatively quiet; it was clear that the majority of MSers and the mainstream MS community are moving on. Until new data appears the CCSVI arguments appear threadbare; all I heard yesterday was anecdote after anecdote. Some MSers think anecdotes are evidence. This is not how science works. It was clear that a large number of MSers who have had CCSVI procedures have not seen any significant and sustained benefits. The silent majority? May be a UK register or CCSVI non-, or partial-, or temporary-responders should be opened?

Feedback on my talk was good and a lot of MSers thanked me for giving them hope. Unfortunately, I made one young lady cry in the 3rd or 4th row; I think this was triggered about my discussion about MS being a bad disease and the fact that it reduces life span. I never got to meet her, which I regret. I would have liked to explain to her that the survival data predates the DMT era and that survival figures will almost certainly be better in the future.

MSers still believe a cure is restoration of lost function, most expect to get back to normal. This misconception needs to be addressed.

Stem cell treatments remain overhyped; they are still being viewed as being the wonder or miracle treatment. This is another misconception that needs to be addressed.

Some MSers think neurologists are conspiring with the government and NICE to deny them treatments. This is not the case.

Most MSers view NICE as being a rationing body preventing them from getting access to effective treatments. NICE needs to engage with the MS community a lot more. The need to explain to them what value for money is and why indirect costs are not being factored into their cost-effectiveness assessments.

A large number of MSers and their families don’t know what “evidence-based” medicine is. We need to do more explaining.

Too few MSers know about the NHS “Expert Patient” programme and what it can do for them; this is something neurologists and clinical nurse specialists need to rectify.

Staff members of the MS Society are very jittery about how they are perceived by the MS community; there seemed to a “them-and-us attitude”. Some change is needed to make MS Society staff and the MSers feel part of the same team, which they are.

MSers do not appreciate the important political role the MS Society plays; lobbying for policy changes etc. The MS Society needs to communicate this better, possibly with examples of how they are helping MSers at a policy level.

Overall yesterday was a very positive experience; I will certainly volunteer to participate at the next MS Life meeting in 2 years time; that is assuming the MS Society do another meeting.

Just completed a 10 mile run; I have no idea how I am going to do 26 miles next Sunday.

15 thoughts on “Thoughts from my day at the “MS Life” meeting in Manchester”

  1. That's not exactly how I see this weekend panned out Prof G, I'll post further tomorrow it's a little late for us tonight as we've been in Manchester for the weekend.Regards Andy

  2. I think the CCSVI lobby was incredibly vocal this weekend. And I dont think the MSers and the mainstream MS community are "moving on" I believe they are "Stuck" in the same place – reliant on drugs and incorrect information. Anecdotes are not evidence but the stories I hear show that the treatment has positive effects…unlike all the stories I heard of peoples side effects of the MS drugs and lack of progression….I know exactly how science works and I know exactly how business works and its clear to me that there is an unwillingness to progress CCSVI treatments as it will jeopardise profits made off MS DRUG sales.

  3. Hello,Sadly I was unable to attend the MS Life conference or tune into much of the coverage. I will do better next time. I do get the feeling from you and the blog that too many people are unable to see the big picture. I think we can all produce examples that illustrate how unfair the system is but hey life can seem very unfair if you have MS.I would like to know more about the difference between relapsing and progressive MS but please try to keep it simple.Trying to improve people's knowledge about MS, its effects and its treatment is very important. If you and your colleagues together with the Blog and the MS Society can go some way towards achieving this then you will have done very well.Keep up the good work especially with the blog.

  4. It will be great to get your differing views but maybe lets not make it an just and issue of the CCSVI (effective or not) and the bad pharma conspiracy as it is an increasingly sterile and tired argument. It is clear that people often have strong and immobile views of both sides of the divide. In my opinion the latter is irrelevant to whether the former is true or not. The trials will get at the former, then its in the hands of the regulators. But can they be really blinded…probably not from what I heard. So it will need to be blinded assessor.I got more aggro from jobs-worths than protestors.

  5. Re: " …there is an unwillingness to progress CCSVI treatments as it will jeopardise profits made off MS DRUG sales."Sanchia, this is exactly the threadbare comment I was referring to. All anecdote and no substance. I heard plenty of anecdotes from MSers who derived no benefit from CCSVI treatment. Who is listening to their stories? Fortunately, science is progressing and we will get to the bottom of this one way or the other. I suggest we wait for the current studies to come in. As for the conspiracy theory; it has no substance at all. Where is the evidence that Pharma and clinicians are preventing MSers from having an effective treatment to maintain their drug sales. We simply need the evidence that CCSVI exists as a disease entity and then the trial data that treating CCSVI is effective. At the moment we have neither. Several national and international guidelines support this position, including the latest NICE position statement.

  6. Mousedoc after all that was said and all the scientific information on the large front banner the only thing you took from it was a way of questioning the results of the trials before they are anywhere near complete… "But can they be really blinded…probably not from what I heard" What exactly do you mean by this?This comment shows the true focus of your team.Just to give you another little gem as one of our members said. (but this seems to have been conveniently left out) The one thing that can quite easily be tested (regardless of any blinded study) to dismiss placebo is the colour and temperature of hands and feet, placebo cannot change that kind of thing for any length of time.And finally, Giovannoni, our group spoke to a large percentage of people there over the two days and everyone (but one young girl) was completely interested and in favour of our treatment and also were completely bemused as to why it had not been covered inside (although many had a FULL understanding of the situation i'm glad to say) and this may be at the route of the "us and them" feel you speak of.Finally i noticed you didn't make any effort to speak to those of us who had been treated with successful results, Wouldn't any true scientific scholar who was honestly interested in MS want to ask at least one question? One person in particular was talking with a full understanding of the subject with ALL the scientific data research and you sat in silence right beside this person and didn't utter one word.Obviously true transparent public debate is not encouraged as we know only too well. All these actions speak VOLUMES and from the people i spoke to aver the weekend it's clear that many people are now listening silently and noting every step.

  7. Re: "All these actions speak VOLUMES"Until class 1 & 2 evidence emerges from the ongoing studies there is little to add to this debate. We need to establish if CCSVI exists and a clinico-pathological entity and we need blind randomised sham-controlled trials (at least two studies) to see if there is any benefit from treatment. Anything less than this is simply not good enough! The FDA and EMA expect this for DMTs, why should we accept anything less for procedures?

  8. Re: "All these actions speak VOLUMES"Until class 1 & 2 evidence emerges from ongoing studies there is little to add to this debate. We need to establish if CCSVI exists as a clinico-pathological entity and we need blinded, randomised, sham-controlled trials (at least two studies) to see if there is any benefit from treatment. Anything less than this is simply not good enough! The FDA and EMA expect this for DMTs, why should we accept anything less for procedures?

  9. But can they be really blinded…. What do you mean?Some speaking to someone who had had the procedure, they said that you can feel the balloon being inflated. Having not spoken to someone who had had the procedure and not having it myself, I did not know that. Therefore if the sham is not to inflate the balloon, you therefore should know you have had the procedure, therefore the person recieving the treatment is unblinded. You mention colour and temperature, maybe then there will need to be gloves and no touching. They could be important in trial design. If the trials are in progress it is too late to change protocolsTherefore it will only be single blinded i.e. that the assessor should not know of whether their was treatment or not. Simple comment. This is what was done in the alemtuzumab trial"Everyone barr one young girl, we spoke to was in favour in our treatment" Well beside one young girl "planted" to ask me about CCSVI, I personally had few people talking about it, although I did speak to the protestors inside and outside the meeting. I heard about people with positive and negative experiences We are not against "your" treatment more than any other, we ask the same burden of proof of venoplasty as much as any pharmaceutical drug.Prof G had a busy days schedule and he can comment about the person you are asking but nobody has ALL the data because not ALL the sufficient work has been done.As to DEBATE, it is as much about listening, as talking. This done with a view of modifying your view. If you cannot modify your position then should you be debating? It is valid data that modifies viewpoints. When the results of the trials are in, if positive we go one way and if negative we go the other. Will You do so also?…Based on past experience I suspect negative results will not change opinions of some. However until that new, required information is available this treatment is unlikely to made available to the NHS.I was there when my Colleague wanted to talk about what he was doing, there was not much listening or transparent debate there either.

  10. is an international registry that encourages everyone who has had the treatment to report on the effect it has had on their MS symptoms.Since august 2010 nearly 900 participants registered. This includes participants who have had positive effects as well as participants who have had no or negative effects.

  11. I was told by ccsvi protester that thirty thousand Msers have had theprocedure. Alot more than I thought and not sure how you get informationfrom unregulated procedures but means at least 29100 yet to sign up Based on positive info on site trials should be a breeze.

  12. The CCSVI lobby at MS life- who were they? a. MSer's who'd had the treatment b. friends or families of those who'd had the treatment c. MSers who'd like the treatment d. members of the companies who provide the treatment. If any of them were d. it would seem to be highly unethical- like a private neurologist wandering around the conference offering treatment/drugs not available on the NHS but available if you pay.

  13. Definitely (a) and (b) probably c. I didn't notice d. But I was wearing a T shirt that would signal to d – avoid

  14. Hi all,I can confirm 100% none of the CCSVI lobbyists on the day had any connection to clinics providing venoplasty.The young girl who you thought was planted took it upon herself to come and ask you questions as she was quite incredulous to the fact she wasn't allowed to hand out information to people who were clearly interested in hearing of a potential treatment which could ease some symptoms of pwms. Not bad for a 12yr old, but then again she was probably driven by having a Mum with ppms who can no longer stand, has bladder problems and is in constant crucifying pain and didn't find help from the 'pain talk' at MS Life and who continually struggles to find any help from Neurologists as she isn't eligible for DMT's.Back to speaking volumes I thought the question raised and the response given at the debate, to the subject of diet and it's possible beneficial effects of eating well in terms of plenty of omega3, plenty of fresh fruit avoiding dairy and gluten, indeed spoke volumes. I found the answer of not trusting patients to stick to a diet rather pithy and derogatory when talking in terms of study and it did seem she was unaware of Swanks 30 plus years of work.Advising people to look into diet and smoking / alcohol would I thought have been a better approach.I did mention a study looking at blood flow rates to one of the Mouse Dr's on the day and a recent blinded study has just been published. I would appreciate your thoughts to the link below. Andy.

  15. Dear AndyI stand corrected about the young girl and her initiative. I apologise for my presumption.I haven;t seen any of the talks yet I will check the MS Society againWill take a look at the link and will no doubt post on this on the monthly update at the end of the month. There have already been a few publications I would say 50:50 this month and am aware of a couple of new ones which may tip the balance.

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