I have just returned from the EAN in Oslo. A strange meeting of encore abstracts and talks; clearly 2nd tier for the MS community.
There were very few MSologists who attended. Why? They have all already attended either ECTRIMS and/or the AAN. All the MSologists I met at the EAN were either bused in to talk, to attend private MS meetings or to film CPD activities, but not to learn or be influenced as the abstract below suggests.
The EAN, however, is a meeting that Pharma, Big Pharma, has earmarked to get the message across to the general and other specialist neurologists that MS is an important disease, which they need to take seriously. That is (1) recognising the symptoms ASAP, (2) to diagnose the condition ASAP and (3) to refer the patient to a specialist MS unit ASAP (4) were they will be started on a high efficacy DMT ASAP.
Is this ASAP philosophy such a bad thing? No.
The whole premise underpinning our ‘Brain Health: Time Matters’ policy document is to try and activate the MS community to treat MS as a semi-emergency or an emergency. Why wait to be diagnosed, treated or treated with highly effective DMTs if time is brain (or spinal cord)?
The EAN, however, is dominated by MS marketing. I would estimate that 75% of the money spent on marketing at the EAN was MS-related without many MSologists in attendance. The scale and quality of the Pharma MS stands were impressive. Interesting or not? This is the Red Queen Effect in action.
The Red Queen Effect is a term taken from the Red Queen’s race in Lewis Carroll’s Through the Looking-Glass. The Red Queen said, ‘It takes all the running you can do, to keep in the same place.’ The marketing departments of Big Pharma are simply feeding the Red Queen as they try to compete with each other; in reality, they are simply running on the spot with the downside of reputational damage to neurology, themselves and the industry as a whole. When MSers see and hear about the marketing extravaganza that comes with conferences it is no wonder they don’t respect Pharma and neurologists. This is one of the issues that feed social phenomena such as CCSVI and HSCT and divides society. It is simply another example of the haves and have-nots.
I would like to suggest to Big Pharma that it looks at itself in the mirror and rejects the Red Queen Effect and comes up with something more sustainable that will help us regain our self-respect and more importantly the respect of the community that we serve. Note the ‘Royal We’; by participating, I am part of this jamboree.
Despite my criticisms, I suspect nothing will happen. Turkeys’ are as likely to vote for Christmas as Turkey Farmers’ are to vote for cancelling Christmas.
Despite my overt cynicism, I believe that a leader, a true leader, will emerge and slay the Red Queen. And from the ashes, a Phoenix will arise that will change the way Pharma sees and interacts with the world.
For example, why doesn’t one brave Pharma company hire a stand and keep it empty? Empty, except for maybe a few white pinboards with the publications of the peer-reviewed papers that led to the licensing of their product(s). They could also have a board or box for post-it notes for suggestions to donate the money saved on not having an expensive stand to be donated to an MS charity, to support a specific research project or provide DMTs for people living with MS in resource-poor countries. However, doing this would put the marketing teams, designers, builders, booth bunnies, hospitality and logistics staff, etc. out of business. With the latter perspective maybe the Pharma gravy train should be embraced as being a net contributor to society and the economy in general and we should support the Red Queen instead; maybe even increasing the speed of her treadmill?
I maybe a grumpy old man, but I don’t like the underbelly of conferences and what they represent. Maybe it’s time to throw in the towel?
Saposnik et al. Does attendance at the ECTRIMS congress impact on therapeutic decisions in multiple sclerosis care? Mult Scler J Exp Transl Clin. 2019 Mar 18;5(1):2055217319835226.
Conferences traditionally play an important role in the ongoing medical education of healthcare professionals. We assessed the influence of attending the ECTRIMS congress on therapeutic decision-making in multiple sclerosis (MS) care. A non-interventional, cross-sectional study involving 96 neurologists was conducted. Treatment escalation when therapeutic goals were unmet and management errors related to tolerability and safety scenarios of MS therapies were tested using different case-scenarios. Attendance at ECTRIMS was associated with an increase likelihood of treatment escalation in the presence of clinical progression (cognitive decline) and radiological activity (OR 2.44; 95% CI 1.06-5.82) and lower number of management errors (OR 0.26; 95% CI 0.07-0.98). Attendance at ECTRIMS may facilitate therapeutic decisions and reduction in management errors in MS care.
CoI: Multiple
Yawn! Isn’t this old news? Pharma marketing budgets tend to be bigger than their R&D budgets, which should be the real story here.
Yes, R&D spend is a very important point, but it needs to be done well. Not all pharma is doing R&D that well at the moment hence the recently announced mergers and acquisitions between themselves and more investment in academic partnerships with first refusal clauses in relation to IP in the contracts with the relevant Universities concerned.
Prof G as your wife comes from a marketing or advertising background you will know how important branding is for products. Therefore the red queen effect should come as know surprise to you.
Yes, she would say that branding is everything and I wouldn’t dare disagree with her. However, you can also use social responsibility initiatives to brand your product. It is all about making it simple and different. This would mean getting off the treadmill, taking a deep breath, turning around and walking away from the madness. The company that does this will be noticed, applauded and will stand head-and-shoulders above the crowd.
Now wouldn’t that be a brand you would want to be associated with?
Well I’m not very optimistic on this. While the money cow of ms treatments is there people will not move positions even if the treatments are not good enough.
There is a lot of money involved and also people trying to gain fame. I have been following for 9 years ms research and it is really appalling the lack of effort to find a cure.
It is easier to find more crappie expensive treatments.
I will not see a cure in my lifetime.
How do you know that you won’t see a cure in your lifetime? It may here already. A few MSers treated with IRTs (HSCT, alemtuzumab, cladribine) go into long-term remission. Some of these longterm remissions may be a cure. I have always stated that this is a 15+ year experiment and it is currently running. Watch this space. The one problem we face is that alemtuzumab may not be long for the MS world unless we do something about it. Sad but true.
I hope you are right Gavin. I am running out of time.
“The one problem we face is that alemtuzumab may not be long for the MS world unless we do something about it. Sad but true.”
Second problem is it doesn’t work for everyone. Go to Facebook Lemtrada
and you see people still with relapses/lesions…and converting to secondary.
Can’t be a cure unless it works for all.
I think your message sadly applies only to the newly diagnosed RRMS and not to one single person with any form of progressive disease.
Unfortunately, using your numbers, 1 million use wheelchairs and I would guess that at least 50% of the 2.5 million have progressive disease.
What do you suggest to progressive MS patients who have already missed their window of opportunity?
I see on your website that you are concerned about rising sea levels, but your individual contribution to global warning (I’d guess this is your 30th flight this year) is astonishing. You are the man (Prof) that likes to say YES. You must be the first person on the mailing list of any MS conference. I might set one up (AICOMS – Ascension Islands Conference on MS. The invite will be with you soon – business class flights, luxury hotel, Michelin star restaurant, one day tuna fishing exercising, near ball on last evening. You bag will be packed before the invite hits your door mat. Think what you could do if you didn’t attend every MS conference, symposium….. you could see more patients (reduced the waiting lists which result from absent neuros); you could write up some research papers and get them published; you could focus your attention on neuro-protection, re-myelination, neuro-restoration; you could do some decorating / DIY at home (I’m guessing you not the sort of guy who can fix a dripping tap). Your pension should kick in at 60 – use the next 5 years wisely.
Re: “… your individual contribution to global warning…”
I agree. My daughters take me to task over this all the time, but interestingly don’t have an issue when they want to use my air miles for holidays with their friends 😉
On a serious note, things are changing; 80%+ of my steering committee, data and safety monitoring meetings and even CME contributions have moved onto teleconferencing platforms. The problem is that well-established conferences are still the medium most commonly used for dissemination of research. This is what academics do!
There are essentially two roles that an academic has; the generation of new knowledge and the dissemination of the knowledge. If you have any ideas on how to make these roles more environmentally friendly I am prepared to listen.
Re: “I might set one up (AICOMS – Ascension Islands Conference on MS. The invite will be with you soon – business class flights, luxury hotel, Michelin star restaurant, one day tuna fishing exercising, near ball on last evening.”
This comment shows you that you don’t attend scientific or medical conferences and that you don’t really have an understanding of their role in science. Conferences are work, hard work. At the EAN I gave 11 presentations and had over 10 face-2-face meetings. The meeting has also generated many more weeks of work for me.
I will do a blog post on why from an academic perspective medical conferences are important.
It amazes me that this blog is still shovelling out the same claptrap for over a decade now.
Don Giovannoni is using the same old metaphors and analogies that he was utilising back in the noughties; peddling out the same old clichés and platitudes he started off using a generation ago, only now it’s become shameful and embarrassing. Many of the drugs he extoled have now been either debunked or ruled against by the European Medical Agency. Alemtuzumab is deemed so toxically dangerous that health professionals will only prescribe it spartanly.
He has wholesale failed in advancing multiple sclerosis treatment, yet acts like the world of MS healthcare is actually in fine fettle. For him to smugly pontificate that a cure is already at hand is an absolute dereliction of duty, especially when the landscape of progressive MS DMTs is essentially non-existent.
No-one out there other than the unqualified readership this blog actually takes anything written here seriously. That is why JK Rowling never acknowledges any calls to participate when Don Giovannoni reaches out to her. This blog doesn’t even figure in her conception because she is actually wanting to invest in projects that succeed, not get laughed at. All of Don Giovannoni’s projects have either failed or are in the process of failing.
MS healthcare is in an even worse position right now then what it was when this blog started. This blog is pretty much catering to an audience that doesn’t know any better.
Aww, thanks for visiting but I was hoping for some new material.
“It amazes me that this blog is still shovelling out the same claptrap for over a decade now. ”
Appparently they redesign it every 10 years to hide the lack of progress in the las 10 years
” This blog is pretty much catering to an audience that doesn’t know any better.”
The ones who are newly diagnosed..and haven’t figured out that 12 medications doesn’t = a cure.
A treatment for pms would equal a cure for
all ms though..alas there isn’t one. People hang out here untill they
hit pms stage and then become bed/house bound or head to dignitas in
swiss land
Things have moved on quite a bit in the last 10 years; have you been sleeping?
MS is being diagnosed earlier, treated earlier, in particular with highly effective therapies, we may be curing a small minority MSers, and in the majority, we are delaying worsening milestones but a substantial amount.
I note you are the glass-half-empty sort of person. Technology and science advance relentlessly and the field of MS is one example of this., but you obviously won’t agree 😉
The glass half empty tag is relevant. Those of us diagnosed with the disease know we have been unlucky in the lottery of life – c.1 in 600 chance of getting MS. Then we see how devastating MS can be when we sit in the neuro’s waiting room or see that MS is one of the diseases which at its latest stages in considered worse than death. When we look back each year we see the losses (some small, some large). MS research has been painfully slow. You have a highly regarded job, a wife, daughters, you run… I lost most of these things because of MS – can you blame me for being a glass half empty person?
This comment refers to Dr Dre; the eternal cynic! However, as the saying goes, if you ‘scratch any cynic and you will find a disappointed idealist’, which has always been my interpretation of his position.
Let’s face it Dre trolls the same tired, ill-informed little screed once in a blue moon to try and get a rise out of people.
Best ignored.
“Things have moved on quite a bit in the last 10 years; have you been sleeping?”
No..your post is so out of touch..it reads like MS Society propaganda..things look great from detached 10,000 ft. view. But when you look at
people you see suffering and progressive disease you’re blind to.
If you can’t see things clearly…you can’t be a researcher who makes break out therapy…as opposed to all the ms pharma hype bloggers crying”We’ve
come so far..”
10 years…No..treatment for progression..No neuroprotectant..No EBV…
No time left for these 2 women. Someone diagnosed today can wait….
Sad thing is hsct almost bought her more time…but treated too late..cause
of nueros who say hsct is too dangerous…need more studies…there’s
no time progressive disease..it’s like cancer…
‘Straight after the.. second round of chemo I felt the brain fog lift and my legs got lighter. It did feel remarkable.’’she was delighted to discover she had regained abilities lost: suddenly she could thread a needle, so she sewed on buttons and took up hems.
‘On one day, I managed to walk more than ten miles, on legs so light that I almost felt I was dancing up the hill. I hadn’t been able to do that for years,”
“But slowly and insidiously, like smoke seeping through the crack beneath a door as a fire takes hold, the MS crept back. At six months her walking began to get worse: ‘I started to wake up and the brain fog would be back.”
https://www.dailymail.co.uk/news/article-6533923/How-two-BBC-stars-took-different-paths-dealing-MS.html
I love a saying about Pharma that goes something like this “to cure a patient means losing a client”.
The problem of stagnated MS research lies at many levels and not only with the immoral Pharma. Pharma, time and again, has shown that their shareholders are more important than the patient.
It lies with governments for lack of funding for unbiased studies from strong, honest researchers. It lies with the “card carrying” neurologists that lend their “trusted” name to back an inferior, recycled or horizontal product. These neurologists have forgotten why they had the honor of being allowed into medicine in the first place-ie. the patient’s wellbeing.
It also lies with corrupt steering committees. It lies within big business MS Societies that gives pennies on the dollar for research and squanders the rest on salaries. It lies within Pharma funded journals and either ignorant or corrupt drug approval boards that allow new drugs to be compared to CRAB drugs instead of the best drugs available. They allow approval of these drugs based mainly on relapse data and very minimally on halting progression long term.
We are no closer today to a cause or remyelination, neurodegenerative and neurorestorative therapies than we a decade ago when this website started.
Unfortunately you’ve summarised where we are today in a couple of paras. Without understanding the biology / mechanisms the trials are just shots in the dark. We are still stuck in the anti-inflammatory segment of Prof G’s pyramid. I’m generally very polite and thank research teams for their hard work. I now ask the question – what the hell have you achieved? A friend with MS at 35 had just ordered his first electric wheelchair, has given up his job and has moved into a tiny bungalow- In 2019 this shouldn’t be happening. The way he is going downhill I doubt he’s going to make 40. Yet this blog gives the impression that progressive MS is now treatable!
“We are no closer today to a cause or remyelination, neurodegenerative and neurorestorative therapies than we a decade ago when this website started.”
Not to mention no EBV therapy.
Actually Pender has a Tcell therapy..but like Ritux. and Alemtuz. it comes from cancer research and has nothing to do with ms research.
Re: “to cure a patient means losing a client”
Not sure if you are correct. The IRTs are licensed as short courses. If pharma played your game alemtuzumab, cladribine, mitoxantrone or HSCT would never have been developed as treatments for MS.
Re: ” I now ask the question – what the hell have you achieved? ”
I can’t comment about your friend, but you need to come and sit with me in my clinic to see what we have achieved. MS is unrecognisable to what it was 25 years ago. It is all about early diagnosis and early effective treatment; if you miss out on these it is not good news.
” MS is unrecognisable to what it was 25 years ago.”
What it really was 25 years ago…and what you remember are going to be different.
” MS is unrecognisable to what it was 25 years ago.”
If someone has ppms….it’s not.
“It is all about early diagnosis and early effective treatment; if you miss out on these it is not good news”
This statement is exactly where the frustration stems from. It should not only be about early diagnosis and early effective treatment.
I completely understand that your group are doing great work with early RRMS. Also, that your group, because of this public extraordinary informative website, unfairly take the brunt of anger and criticism. This is because of a very justly frustrated progressive MS patient population with no access to a single meaningful treatment.
Again, 1,000,000 million MS patients are in wheelchairs and probably > 50% of the 2.5 million diagnosed are becoming increasingly disabled or progressive.
They have already missed their therapeutic window to be diagnosed and treated effectively early. What do you now suggest for the forgotten majority, ie. the progressive patient?
Anyone who is elated with the current state of immunotherapy only approach is obviously not a progressive patient.
Turkeys and Turkey farmers – some of us have the complete opposite view about this site to the one expressed – so routinely expressed, as it happens.
“– some of us have the complete opposite view about this site to the one expressed –”
Most likely you don’t have progressive ms or know anyone who does.
Which site do you refer to…this one or the one that prededed it for 10 years.
Well I think that Prof G shouldn’t be wasting one minute of his time answering pointless rants. There’s a lot of us out there who rely on what he’s doing personally and what is written about on this blog. Where else are we to go for the best and latest news? What’s the point of adding to his mental burn-out? His considered view of the state of MS treatment/research is to my mind invaluable and gives a perspective to a lot of my negative thoughts.
Completely agree! I live in Norway and my wife was diagnosed with MS last year and I have searched and read almost all international websites about MS. This website and the doctors posting is one of the most interesting and educational sites avalaible! Unfortunately there will always be trolls out there spamming and takling s***. Pretty sure most people appreciate this site. Keep up the good work doctors!!
I agree with the last post from ‘Kay’. This blog is very informative and helpful. Thank you so much for all the work you put into it, along with the multitude of other things you do.
Well as they say do not shoot the messenger. What is true is that all of you at barts are doing a superb job at educating and passing information. And also researchwise.
When i was diagnosed 9 years ago the lack of information was enormous and you would be hopeless at understanding why your neuro would takeong some decisions.
But it is upsetting to find out there is still no drugs for spms. We spms patients are filled with anger. there is always exceptions to the norm… yes treat ms early… . I am one of the exceptions treated with fingolimod from the start and cladribine later, may things have slowed down but this ms beast continues, and yes i am left with anger. I know science is slow that is why the scientific focus should be very carefully placed.
There are…..it is called Siponimod This was approved in USA, it is with regulators in Europe. I believe cladribine also got approved for SPMS in USA
However I personally think the main function of mods and others are a immune inhibitors. Sure there may be impact on some elements of progression but as fingolimod did not “cut the mustard” (https://www.dictionary.com/e/cut-the-mustard/) it is hard to think that siponimod is going to be remarkably different. although it loses some side-effect potential
I have been making the point that we need something in addition and the fastest way to get prospect of an addition is to be in a trial. Obviously the first one that springs to mind is the MS_STAT2 trial which is recruiting as I write. This is a UK wide study
check out
https://redcap.ukmsregister.org/surveys/?s=8EKEANFRA7
MD, there are no drugs for “non-active” SPMS, which makes up the majority of SPMS.
Cladribine and siponimod are only approved for “active” SPMS. Ocrezulimab is only approved for “active” PPMS.
Approving bodies, like the FDA, read through the selection-bias trials and found that the three of these drugs had no effect above placebo on “non-active” progressive MS.
Although, Pharma and its researchers are saying the trial was not powered for looking at “non-active” progressive MS.. Was it a coincidence that mostly “active” SPMS or PPMS were chosen for the trials? No.
It is the absolute perfect crime or marketing scheme. At some point, majority of patients will transition for RRMS to SPMS and will “need” siponimod, which is identical in mechanism to the soon to be off patent and cheaper fingolimod, or cladribine.
You are shooting the messenger here….I know that we have to more and that the current DMT are not a panacea
You are correct in “your(NHS)-world” that there is nothing available but in “my world” I could name a few hundred possible candidates. The problem it how to narrow this list down and how to show that the hunches are a reality…I had just given a talk a MS froniters showing how 5 of my hopefuls have been chucked-away by the clinical trials. Do I think they were turkeys….No I don’t…The science is strong
Sorry, not meaning to have a go at you. I just get irritated when it is stated that there is a choice for SPMS or PPMS.
There is a choice for a small minority of “active” progressive MS but not the majority of “non active” progressive MS.
I can plainly see the propaganda or marketing scheme by Pharma preying on a progressive patient” hope by stating there is a treatment for SPMS and PPMS, which in the majority of cases is not true.
This places the neurologist in a precarious situation to either lie to have it covered or deny the progressive patient a “treatment”.
I hope your common sense voice is heard in furthering treatment of progressive MS.