The last time I saw George Ebers was at the European Charcot Foundation meeting in Baveno in 2017. I sat next to him and we had a long chat about MS and his new life in Canada. George had lost his anger and was very content with life. I learnt about all his projects on his farm; his windmill restoration project, his fence building, on being a carpenter and the summer water sports on his lake. I was slightly envious of his lot. I sincerely hope that I will be able to do something completely different, i.e. outside of MS when I retire.
George complimented me on my presentation at the meeting that was addressing social determinants of health and addressing poor access to DMTs in resource-poor environments (see below). He didn’t question whether or not these treatments were effective or not. I think he now realises that as new data and more effective DMTs have emerged that the natural history of MS has changed. In other words, DMTs are delaying the onset of the clinically apparent phase of SPMS and possibly preventing SPMS in some cases.
As for George’s personal attacks on his peers and his rant about the pharma industry, journals, universities and no doubt the regulators these need to be taken in the context of greater social changes. He may be right, but what has happened in MS is simply a representation of what has happened in greater society. Over the last 40 years, we have seen the rise of capitalism and the neoliberal philosophy and its impact on social mores. Everything has a price the debate is how much. Almost everyone is on the take. As the saying goes in America, “If You’re So Clever Why Aren’t You Rich”?
However, there is definitely a change in the tide. Rising inequality is ripping our society apart and is impacting massively on the provision of healthcare services and health outcomes. It is clear the neoliberalism, in its purest form has had its day, and socialism is on the rise again. I don’t think George has to worry too much; the medical profession and the MS Community will find its soul. It is our job to make it happen sooner than later. There are hundreds of thousands of people with MS living in resource-poor environments who need our help.
CoI: multiple
I’m not too interested in political or economic ideologies. I would guess that Mr & Mrs G are in the top 5% of earners, so it’s a bit rich (no pun intended) moaning about inequality. Try living on £30k a year which is the average U.K. salary, or living on disability benefits.
The underling issue which Prof Ebers is pointing at is the fact that pharma / money are running the show. The reason why we don’t know the cause of MS, have a cure for MS (which addresses the cause), or can stop further disability worsening for those with established disease, is that pharma are making too much money from drugs which patients have to take forever. There has been a real push for MSers to start drugs as early as possible (CIS) and to continue even when the drugs are doing nothing (SPMS). Pharma will never give up this cash cow.
Why would an MS bigwig researcher nail this disease? No more MS conferences around the world, no more payments for sitting on steering committees or presenting at events etc. etc. No one will rock the boat or bite the hand that feeds it. 2020 will see the same old ACTRIMS / ECTRIMS and AAN conferences. Another European Charcot Foundation conferences by an Italian lake. Some other symposiums in a range of countries across the world. Perhaps a lecture tour to Canada or the Far East. Meanwhile, 100k people with MS in the U.K. watch themselves deteriorate further given they were sold a pup (anti-relapses drugs don’t have much effect on underlying disease worsening).
This whole current set up stinks. I look back to some of the doctors who really made a difference – James Lind, Edward Jenner, Joseph Lister, Louis Pasteur, Alexander Fleming… they saw a problem and solved it. It’s a pity we can’t see more of this spirit today, but money has corrupted the medical profession. Medicine is now clumped with law and finance as a career that offers big bucks. We seem to have lost the original calling for people entering the medical profession – to help the sick.
Is there one single autoimmune disease that has been cured. Many of them do not have the pharma interest on MS. NMO now has pharma interest is that a good or bad thing?
No pharma interest no new antibiotics?
Re: “I would guess that Mr & Mrs G are in the top 5% of earners, so it’s a bit rich (no pun intended) moaning about inequality. ”
I look after patients, yes people with MS, who have been devastated by austerity and rising inequality. Have you read my post on ‘Tea & Toast‘?
I, therefore, have every right to raise the issue of inequality. I would go one step further and suggest that you can’t be an HCP and not get involved with this issue; the impact of inequality is all around us, every which way you look.
Thank you for giving us your response to the post about Dr Embers. I agree that what he was criticising the MS academic community for is something that could be levelled at academia generally. Sadly, a lot of research is pretty pointless (except for career and finance building).
There are good forces at work, though, and as you imply, we have to focus on and develop them. (Isn’t there a good project being run by Ben Goldacre which evaluates the quality of some medical research?)
This blog is helpful too – disseminating and assessing information for MSers who might not otherwise have much to go on except the occasional appointment with a neurologist.
I’ve had nothing but progressive MS – slow, early onset PPMS. I’m not in a resource poor environment, but there is no treatment for my smouldering disease. Current DMTs are not good enough from where I’m (still) standing.
Pharma have been burned with PPMS studies. This started even before beta interferon arrived
Not having a dig or stating facts. Just opinion. Pharma have been burned in progressive MS is because they were looking for a treatment they can charge billions for and take for life. Not a cure
Thank you Prof G for responding.
Although I’m not sure speculating his current mindset is helpful –
‘I think he now realises that as new data and more effective DMTs have emerged that the natural history of MS has changed. In other words, DMTs are delaying the onset of the clinically apparent phase of SPMS and possibly preventing SPMS in some cases’
It’s still incurable. It’s still degenerative, it still becomes secondary progressive.
As for ‘Possibly preventing SPMS?’ Sorry has someone found a cure? Because that’s the only way SPMS is prevented? I’m no neurologist but that’s my understanding…
The only difference I can see is that relatively healthy people in the prime of their life’s are still persuaded to strip their immune system, deal with insidious side effects and be grateful that their scans are show no new lesions, which don’t actually correlate with their physical, cognitive, emotional and intellectual decline; or deal with the realities of living life with a non existent immune system in the age of an antibiotic crisis.
As for ‘As for George’s personal attacks on his peers and his rant about the pharma industry, journals, universities and no doubt the regulators these need to be taken in the context of greater social changes.’
That wasn’t the George I saw or read and believe he made very relevant (calm!), observations that are still very relevant now
Feathers thank you for your comment. Prof. Ebers’ wrote his letter to the EMA in 2013. A lot has happened since then.
Regarding a cure. Have you read my many posts on this blog about an MS cure?
https://multiple-sclerosis-research.org/2017/06/thinkspeak-to-find-a-cure-we-have-to-define-what-we-mean-by-the-term-cure/
I think some of our treatments may cure MS even if MS is caused by a virus. I have also commented on this several times on the blog.
The cure experiment is ongoing and may take 25 years to deliver an answer or result. It is not realistic to expect MSers to waith that long hence the treatment philosophy or early and effectively.
Ask the people ten to fifteen years post alemtuzumab
The clinicians before pharma were around faired no better and the treatments proposed were around then
Again, 100% not true. Researchers did not have access to the same technology at their fingertips back then. It is like comparing oranges to apples.
Comparing apples and oranges: a randomised prospective study
🙂
That is very funny MD2.
Anyone that questions the efficacy of DMTs is seen as a threat to the powerful Pharma community, Neurologists that prescribe them, are vilified. Do a study of patients with RRMS and narrow the criteria for participants and one can get the results required to have a treatment approved. There are no two patients that have exactly the same experience of MS. How many factors are considered? If you have a cognitive test, the questionnaire asks “did you go onto further education?”. In many cases this isn’t relevant. How many people with highly active MS carried on for over thirty years without using a wheelchair? Does anyone know? Only now that people going on to have SPMS after taking DMTs is the scrutiny out there. There are many pwMS that have never had any treatment, but no one has ever asked about their lives. So yes, when scientists find the exact cause, maybe there will be a cure.
There are hundreds of thousands of people with MS living in resource-poor environments who need our help.
Practice what you preach ?
Talk the talk walk the walk?
Re: “Talk the talk walk the walk?”
Search the blog using the search term #OffLabel 😉
I think Barts-MS have treated >250 MSers using #OffLabel DMTs (1 in 4 of our patients on a DMT) and we have disseminated our off-label protocols to over 10 resource-poor countries (possibly more). I also agreed to co-chair the MSIF’s submission to the WHO Essential Medicine’s list to get MS on the radar of resource-pood countries and why I have accepted invitations to speak in ICTRIMS (India) and the national neurology meeting in Pakistan next year on off-label prescribing. Not sure if these activities count as talking or walking. We only have 24 hours in an average day, 7 days in an average week and ~350 days in an average year. I suppose we could always do more, but some of us need to take a holiday even if it is for only 2 weeks of the year 😉
That was not my point
😉
Hi Luis
You seem determined to walk down a one-way street. HSCT is only one option there are others. You are lucky that Prof. G at least supports your quest. And you should at least acknowledge that HSCT is not available to many people with MS in these countries. Any suggestions?
https://multiple-sclerosis-research.org/2019/03/1st-line-hsct/
“You are lucky that Prof. G at least supports your quest. ”
He does not really…and pushes some totally fake hsct news…
“In fact there is evidence that more advanced patients may actually be made worse by HSCT; the chemotherapy used to ablate the immune system is neurotoxic and may speed up neuronal loss.” I would love to read the studies that prove this irresponsible conjecture…fake ms news.
Petzold et al. Evidence for acute neurotoxicity after chemotherapy. Ann Neurol. 2010 Dec;68(6):806-15. doi: 10.1002/ana.22169.
OBJECTIVE: Chronic neurotoxicity is a recognized long-term complication following chemotherapy in a range of diseases. Neurotoxicity adversely affects patients’ quality of life. The objective of this study is to examine whether there is evidence of acute neurotoxicity.
METHODS: This prospective study included patients with secondary progressive multiple sclerosis (SPMS-BMT, n = 14) and hematological malignancies (HM-BMT, n = 17) receiving chemotherapy as preconditioning for bone marrow transplant. The control groups included SPMS patients matched for demographic and clinical data (SPMS-PL, n = 14) and healthy controls (n = 14). Neurodegeneration was assessed at baseline and longitudinally (months 1, 2, 3, 6, 9, 12, 24, and 36), combining a clinical scale for disability (Expanded Disability Status Scale [EDSS]), a serum protein biomarker for neurodegeneration (neurofilaments, NfH-SMI35), and brain atrophy measures (magnetic resonance imaging).
RESULTS: Disability progression was significantly more acute and severe following chemotherapy compared to placebo. Immediately after starting chemotherapy, serum NfH-SMI35 levels increased in 79% (p < 0.0001) of SPMS-BMT patients and 41% (p 100-fold higher 1 month after chemotherapy (29.73ng/ml) compared to baseline (0.28ng/ml, p < 0.0001). High serum NfH-SMI35 levels persisting for at least 3 months were associated with sustained disability progression on the EDSS (p < 0.05). Brain atrophy rates increased acutely in SPMS-BMT (-2.09) compared to SPMS-PL (-1.18, p < 0.05).
INTERPRETATION: Neurotoxicity is an unwanted acute side effect of aggressive chemotherapy.
“I think some of our treatments may cure MS even if MS is caused by a virus.”
Oh come on. Immune system destruction for some, very early on – i.e. those lucky enough to have reversible symptoms showing up soon enough – may be a “cure”? I give up. Clearly, for you, folk like me with insidious, slow, early onset PPMS are too uncommon and inconvenient.
“Clearly, for you, folk like me with insidious, slow, early onset PPMS are too uncommon and inconvenient”…….Quite correct…your only hope is hsct in mexico/russia…have seen it work on people..who I thought it might not. Or just read this site for the next 10 years…dreaming as they tend to… while you progress non-stop.
No thanks, is all I have to say to that.
You ought to remember that you have no right or qualification to draw conclusions as to other people’s MS, their prognosis or the treatment they should follow. People you have never met, know nothing about. This is a kind unpleasant arrogance many HSCT zeolots seem to have in spades.
Dr. Ebers comments are more pertinent and accurate today before than ever. Deep down inside you know it Dr. G. It will maybe take your retirement, like Dr. Ebers, to be able to be more open and critical of the current state of MS research.
I follow this website for its valuable insight and knowledge but have great difficulties with “turning the other cheek” when it comes to Pharma (excluding MD, MD2).
I find it extremely commendable that you have stated MS is one disease, not three. Also, that relapse rates & Gd MRI changes clearly do not equal progression of the disease with is likely related to adverse changes in innate immunity of the CNS and is most likely “true” MS.
Patients are depending on the “card carrying” or influential neurologist, like yourself, to protect/help them. This is not happening in this current doldrums of MS research and treatment where endpoints of trials are relapses and Gd MRI changes instead of long term disability.
Pharma is allowed to compare to low lying fruit such as a CRAB drug or now teriflunomide, instead of the best drugs available. Pharma is running trials with “me-too” second generation drugs which have no proven benefit over its predecessor, other than their exorbitant price.
The steering committees, journals, approving bodies, MS charities and influential neurologists are condoning these Pharma driven trials. How is this helping the MS patient and furthering MS research?
I think we should be careful about to trying to kill the golden goose that lays the golden egg. It is not about them (pharma) versus us the rest of the MS community. I think we need to approach this with an open mind and put in place systems to protect ourselves. At the end of the day, Pharma is the only show in town; that is the reality. I try and cover this issue in my Medium post on high-cost drugs.
“careful about to trying to kill the golden goose that lays the golden egg”
How much worse can we do for the current treatment of progressive MS? I think the golden goose is a male that will never lay an egg.
We, at Barts-MS, have thought about these issues and have tried to work ou alternatives. You may want to read this paper we wrote on this topic. At the end of the day, we need a political solution; we don’t have the power to make change happen.
Giovannoni G, Baker D, Schmierer K.The problem with repurposing: Is there really an alternative to Big Pharma for developing new drugs for multiple sclerosis? Mult Scler Relat Disord. 2015 Jan;4(1):3-5. doi: 10.1016/j.msard.2014.11.005. Epub 2014 Nov 21.
If it is not feasible to develop licensed drugs to the stage that they can actually be prescribed for a new indication, can we justify, either ethically or economically, the undertaking of proof-of-concept studies using off-patent medications? Without a financial incentive it is very difficult to repurpose off patent drugs for a new indication. Therefore, we need a political solution to allow the repurposing of off-patent drugs by other stakeholders or Big Pharma.
Re: “How is this helping the MS patient and furthering MS research?”
Most of our recent insights into the pathogenesis of MS have come from these trials. If it wasn’t for these trials many of our current debates and discussions wouldn’t be happening. I also need to remind you that Pharma and the academic community or working together to do the next generation of MS studies, i.e. building the therapeutic pyramid. Even exploring alternative hypotheses, for example, anti-EBV studies need pharma. An EBV vaccine will need a big Pharma company to invest billions before we can realistically do MS prevention studies. Even Michael Pender has to partner with Pharma to translate his work.
Me again. I was told to my surprise that one of your choices for the pedestal, who I believe is the only one that has not benefitted is actually not a neuro. 🙁
MD are you following me?
Please read my last response to you in which I clearly state that I do not put a single neurologist on a pedestal but admire and respect their work, including Dr. G and yours even though you are not a neurologist.
A better question that I would pose to you is: Who does Dr. David Baker put on a pedestal with no cause of MS, no prevention of MS and clearly no treatment of progressive MS?
Do you not agree with the points I have made with respect to Pharma and their conflicted neurologists?
Do you think is ok in trials to use endpoints of Gd MRI and relapse rates instead of long term progression? Do you think it is ok to compare new drugs to CRAB drugs or teriflunomide instead of the best drugs available? Do you think it ok to proceed with trials on second generation drugs when there is no proven efficacy benefits over their predecessors?
I understand funding of trials comes from Pharma but when does a physician stand up for their patient, like Dr. Ebers? How by running these trials with these endpoints that do not address deleterious changes in innate immunity, the likely cause of MS, are we helping further research?
‘He may be right, but what has happened in MS is simply a representation of what has happened in greater society.’
Indeed, greed and vanity is a problem everywhere. Banking, medicine, government… Ugh! 🙁
It is not fair to request the pharmacy industry to invent their own death. They do what is reasonable to expect from them.
The young doctors that want to do research must find money to do so. Only place to find this is pharma.
Now let’s talk about the short sighted imbecile economists that runs the health care (nhs) based on New Public Management. These are the people that has let us down.
If they provided money I am sure there would be lots of scientists queuing up for the research.
I don’t even think we would need socialism, common sense and a Britain first attitude is plenty sufficient.
“In other words, DMTs are delaying the onset of the clinically apparent phase of SPMS and possibly preventing SPMS in some cases. ”
Other than alemtuzumab which doesn’t work for everyone…there is no indication or studies that show this…are there..?
Regarding problems with the greater society, I fear it is not socialism that will take the place of neoliberalism, but proto-fascism. We see this in the rise of Trump and his sycophants in the US, Boris Johnson in the UK, the ascendant far right in Western Europe, and the nascent dictatorships in Hungary and Poland. Here in the USA, the population at large makes no distinction between socialism and communism, painting both as decidedly anti-American.
Beyond the political problems rending the world stage, we have some very real structural problems in the 21st century that society is ill-equipped to deal with. Simply put, there are too many people. I don’t say this to be heartless, merely stating facts. Throughout history the size of the human population has been more or less self-regulating through disease, famine, and war. In effect, there has always been a natural “culling of the herd”.
Now, though, due to advances in medicine and agriculture, and the specter of nuclear annihilation, these mechanisms have been largely neutralized. Up until the advent of antibiotics, infectious diseases killed hundreds of thousands if not millions of people each and every year. Famine regularly swept large areas of the world, wiping out entire populations. And war, both local and larger scale, regularly cut down tens or hundreds of thousands in relatively short, violent spasms.
Of course, the eradication of many killer diseases, famine, and large-scale man-made human massacres are all tremendous feats that have, up until this point, supremely benefited mankind. And they could continue to benefit mankind if our sociopolitical structures manage to change fast enough to keep up with ever increasing populations.
Unfortunately, it is starting to look like they cannot, and the cracks are beginning to show everywhere – in this forum we see and explore them in the context of medicine, but on a macro scale it does tend to look like the whole house of cards is getting close to collapse.
Automation is rendering most manual laborers obsolete, just as our systems of education become underfunded and distrusted. As has been attested to by the election of Trump and the Brexit vote, vast segments of liberal democratic populations feel so disenfranchised and castigated that they are willing to take a stab at blowing the whole thing up on the off chance they may finally get a fair shake. Unfortunately, what they are likely to get is just another kick in the ass.
I fear that the planet will find yet another way to self regulate. We may soon see some sort of mass human die off, the likes of which we haven’t seen for at least 80 years, since the advent of nuclear weapons made all but local skirmishes largely unthinkable and the widespread use of antibiotics eradicated many of the maladies that historically plague mankind. Whether this tile off comes in the form of pestilence, massive food shortages, or natural or man-made catastrophes is anybody’s guess, but the stresses on society are popping the rivets, and the status quo is unlikely to hold.
To my eyes it seems like we are approaching one of history’s tipping points, and things may get far worse before they get better. I’m always reminded that the Black Death of the 13th century was in large part responsible for the Renaissance that took root a few centuries later. The nearly catastrophic depopulation caused by the plague allowed for a later flourishing of philosophy, art, and science.
My gut tells me we may see this cycle soon repeat. I certainly hope I am wrong and that my pessimism regarding the current situation is overblown and has been tainted by my own physical decline. Still, one need only turn on cable news to see a world on the brink, and societies hopefully ill-equipped to take on the complexities of seemingly exponentially increasing problems largely brought on by our own clever inventions.
Oops, couple of typos in the above diatribe. “Tile off” should read “die off”, and “hopefully ill-equipped” should read “woefully ill-equipped”.
The pitfalls of using voice recognition software…
It may just be that the widespread use of antibiotics actually leads to the widespread die off that you are proposing through antibiotic resistance.
We are also long overdue a global flu pandemic like the Spanish flu of 1919.
MD2, I think there was a paper on comorbidities and the Spanish Flu pandemic after WWI. It seems that many died of secondary bacterial pneumonia in an era before antibiotics.
I watched a facsinating documentary on the Spanish Flu pandemic on the BBC iplayer and was interested to know that there were two main epidemics that potentially originated in US military camps and that the second epidemic was far more virulent than the first. It seemed to cause a cytokine storm and therefore affected young adults more. Although I don’t know the story, I am guessing that it was the Flu that killed my great grandmother, orphaning my Nan in the process. Her dad was killed in 1914 on essentially the first skirmish in the First World war when his battalion was wiped out on their first contact with German forces
I mean this sincerely Kamikaze – you have a real gift for expressing your thoughts. The words flow so well. Please keep contributing to this blog.
Prof, clearly people are just trolling you with their conspiracy theories. Rather than responding to the bait, how about taking a look at your patients’ emails and spending a little more time in consultations rather than sauntering in for the last 5 minutes?
Very misleading – watch Living Proof . Nothing has changed. Putting words into mouth, comes to mind.
You are diminished by your post