Conspiracy

C

A reader (see below) sent us the following letter from George Ebers to the EMA dated 9th September 2013. In the letter, George Ebers pulls no punches and makes several controversial claims about Industry, Academics, Journals, Universities, MS Charities and the MS Establishment. Is there a conspiracy theory or not? As it has been 6 years since the letter was sent to the EMA has George Ebers’ claims been vindicated? You be the judge.

Prof. George Ebers, Image YouTube

CoI: multiple

About the author

BartsMSBlog

44 comments

  • I already knew about this .

    2013! And what has happened since? In my opinion many ms new drugs. But how many focused on spms? …… nothing. I have been on 2 effective ms drugs since the beginning , yes sure almost no relapses, but in deep s… now spms, and still going down.

    It is distressing, a fight against the clock . Still no comparisons between MS drugs , A waste of effort money and time . Too many interests.

    • Whilst Pharma are making money out of relapsing MS, the urgency for non-relapsing progressive MS is not there and this involvement has made the cost of tirals ridiculous

    • My MS neuro, who accepts no pharmaceutical monies, came back from last year’s AAN and declared that he felt like he needed to take a never-ending shower, as the conference had become nothing more than a huge whorehouse. He was visibly distressed that most of his colleagues seemed to have completely subverted their medical ethics to the siren song of pharmaceutical company payola.

      What’s most distressing to me about Dr. Eber’s letter is his description of the Pharma company take over of the medical journals. If we can’t trust the doctors doing the research, the data provided from that research, nor the journals publishing the research, how can we, as patients and physicians, possibly make informed decisions? Furthermore, how can we even hold out a sliver of hope that the only folks actively searching for a cure are not mere outliers whose findings, if not actively suppressed, will receive scant attention from the powers that be?

      The corrupting influence of big money throughout society threatens to bring our much cherished liberal democracies to their knees. From Trumpism in the US to the Brexit Insanity in the UK to the authoritarian takeovers of nascent democracies of Eastern Europe, we are in the midst of one of the most disheartening and dangerous times in history. Those of us with chronic illness are among the canaries in a coal mine, perhaps the first to feel the effects of an insidious and corrosive corruption eroding all facets of society. In the words of The Great Leader: Sad!

      • “Become nothing more than a huge whorehouse…..” :-). A trade show, with paid presenters I think is the better description.

        The company take over of journals. Yes disturbing but this is not the only takeover, as you see certain names disporoportionally in some journal. Journasl want the bid science, how do we know it is true, as most people don’t have enough money to repeat certain stuff, 80,000 individual RNAseq for example.

        How can we trust…simple ensure that the data is deposited in a public repository before a licence is issued.

        Companies I suspect prefer to manage rather than cure…its a better business model:-(

        but likewise

  • A couple of points:

    This post is not a one minute read.

    I hope someone alerted Prof Ebers that his draft letter (if it is his) was going to published on a website accessible by all.

    The Black Swan will never come from the established MS research units – too many reputations and pharma money at stake.

    A number of posters have commented before that the link between MS and EBV was known about some 40-50 years ago. I am another who had a bad case of mono as a teenager and got MS 10 years later. A work colleague had the same experience. The various documented MS cluster in different locations are likely due to a virus. No one in MS academia cared enough to properly follow it through – why would they when pharma X would pay £xx,xxx them to sit on the steering committee of their latest anti-relapse drug.

    The mouse docs are also to blame – mice don’t get MS so the answer was never going to be found by keep studying mice injected with substances to causes inflammation in the CNS.

    When a brave academic working on their own / not interested in the money they could make from pharma (could be Prof Pender) nails this disease (I suspect an antiviral might be the solution) then the rest of MS academia should hang its head in shame. They have invented treatments for a disease which was important for them – kept the research going / kept the money coming in to top up their academic and/or NHS salary. As Prof Ebers says – patients didn’t want to become disabled / use a cane / use a wheelchair / be bedridden. Academia / pharma weren’t interested in this but went for the easy pickings (relapses) which were not the real disease or the real causes of worsening disability.

  • This is information that sort of gets drip fed on here over time, but reading the arguments synthesised quite so eloquently has made me have another one of those moments when I wonder whether I should keep following this blog as tbh the truth hurts…

    Great to see Barts has an nihr funded trial… From memory there was an impetus to use outcome measures relevant to patients for this – hope that was retained in the final protocol…. Maybe one decent investigator led study will begin a culture of change for the ms field?

    BW

  • Disheartening but suspected this without needing to read this letter. Regardless of this letter nothing will Change. Corruption, falsifying the truth, nupitism are the realities of today’s world. Trump was just the outcome. Days finding cures are well and truly dead. Treating the disease is flav of the month. No academic department, no ms charity, etc. Are free from Pharma Money. Not trying to insult anyone including Bart’s. Just stating the obvious.

  • We observe that implement a strong response to MS tends to be difficult, I’m referring not only at pharmacological level, the treatment of a pwMS leads to chronic treatments, is there no interest to “cute” patients? There ate medicines that can put pwMS NEDA !!! Why aren’t they used more? Why EMEA is trying to stop LEMTRADA to newly diagnosed?
    OF COURSE THERE ARE BIG INTERESTS IN BIG PHARMA DEAL…
    I have MS since 2000… I could be a lot better…

  • It’s a depressing read and from knowledge of other areas of academic research and paper publication I am inclined to believe it (plus, of course, there’s the obvious fact that this man is an expert who was in prime position to see the whole picture).

    But what do the people at Bart’s Blog think about it? You are in a much better position to judge than we MSers if we are being failed and even knowingly duped by the combined forces of academia and industry.
    You have left us to judge … why?

  • I keep asking but nobody ever answers what can WE as people whose brains are being shredded do about this?
    WHO should we be lobbying?
    WHICH MS groups/charities/societies should we be tweeting at/writing to/facebooking and telling them we KNOW it’s all just become a BIG BUSINESS to them?

    We’ll never get anywhere if we just vent on blogs…

    • To late I suspect because governments are in on it, they get the pharma industry to pay for the regulators, they court pharma companies to come to their shores, OK the UK govenrment does the opposite no wonder they have all left.

      The charities are doing their best to seek treatments for progreesive MS

  • Are people like JK Rowling who are in a position to help financially, and do so, made aware of what actually goes on in and between big pharma, academia and certain elements of the charity sector as regards MS? I wonder … Maybe charitible funding and donations should be more ‘policed’ … but we will no doubt be given ‘evidence’ that they are.

    • JK Rowling changed her donation recipients from the past, but last time we commented on her donations we got our hands chewed off so I won’t comment on this one

      • I’m pretty sure she wants her money to be used to find a cure, not fund pharma controlled research which benefits mainly pharma. Just wonder how much info she and others who donate (because they have a personal interest in finding a cure) know about the way research operates.

  • MD

    I think we (ProfG) should ask Prof Ebers to write another letter for the blog and now that he is retired he can give us both barrels. I did write to him in the past to do a guest post expecting to hear abit of vitreole, but what we got for the blog was Larry the Lamb talking.

    He has made a few youtube features.

    Personally I have always known beta interferon and copaxone studies were abit of a fudge to allow people with MS access to a treatment when there was not one. This is how the risk sharing scheme started. The question is has these opinions changed as the level of efficacy of some of the current crop of DMT are clearly more effective. There is no point in basing an argument on what in my opinion are substandard goods. However, the point of how pharma influnece has invaded MS research is well taken, but it is not all bad. It has given you MS nurses which arguably have a placebo efffect as goos as a weeka DMT.
    Areas of neurology where there is no pharma interest have not faired better than MS. However I have no desire to defend pharma, defend neuros who benefit from pharma interest.

    Indeed if Prof Ebers had done his home work he would have realised that he was writing to the wrong place as the regulators are paid for by the pharmaceutical industry. So just like the Journal they are all feeding from the same lunch. ECTRIMS too. I bet they are making a killing from the pharmaceutical industry. However, suspect that ProfEbers probably did a fair bit of snacking off the pharma table in them early days.

    I was told that the UK regulators the MHRA are 100% funded by the pharmaceutical industry and the EMA is about 80% funded by the pharmaceutical industry. This suggests that a letter to the EMA was likely to be abit of toilet paper for the executitive lavvy paid for by Biogen, Teva, Merck, etc etc so is it surprsing 6 years has passed. When we went to see the MHRA it was £3,500 and hour apparently for the EMA they told us it was about £33,000 and hour to see them and get a written response.

    However I agree with Prof Ebers that the data should be in the hands of the participants and it should be publically available. I personally believe that all the trial data should be deposited with the EMA for public scruitiny, before a licenced is issued.

    We have found a treasure trove of unpublished data in the pivotal trials of cladribine and alemtuzumab and not all was good news.This has been good for us because it has given us publications. As you will soon see:-)

    The current situtation where you can apply for clinical trial data through clinicaldatarequest.com is not independent access to trial data as we would believe. It is all controlled by the pharmaceutical company who can track every thing you do and important you have to say what you are going to do before you do it. This is hard because you don’t know what is available when you have to ask for what you want.

    • If people get HSCT here in the Uk, which chemo drugs are used to wipe out the immune system first?

      Maybe we should all turn our voice towards the makers etc of them?

      Maybe someone with a brain that isn’t as conked out as me could start a list of who we could contact and what we could say?

      If we ALL said the same stuff to the same people and spread it around, you never know who it might reach.

      1. Would Rituxan (Rituximab) be a start?
      And another thought, are we as patients allowed to INSISIT we see a cancer doctor/haemotoligist in relation to MS>

        • No answer to progressive disease…I suspect that if you start early enough with a highly active DMT, you may be incorrect. I think the study is being done

          • That, MD, is certainly no answer for early onset PPMS, which subtly started the damage long before it became apparent. Current DMTs may work for some, for others they are largely an added incumbrance, window dressing at best.

          • Exactly, that is why we need alternative approaches. We have been saying this for the past 18 years.

            However even those who do not benefit from pharma do no want pharma’s feet stepped on. ProfKs trial count not have failed to work but three failed grant applications and zero interest from some (UK MS society were helpful) MS related entities

  • To be honest…

    As valuable as I think this blog is, it is the only reason I have had sleepless nights wondering if I, with my slow PPMS, should be on some drug, anything being better than nothing. No neurologist gave me this impression.

  • I’m pretty sure she wants her money to be used to find a cure, not fund pharma controlled research which benefits mainly pharma. Just wonder how much info she and others who donate (because they have a personal interest in finding a cure) know about the way research operates.

  • Thanks for this article MD. You are a bright light in this dreary static MS research world.

    I would love to hear a response from governing bodies, MS charities, steering committee members, journal editors and especially the card carrying conflicted neurologists. We already know how Pharma will spin it.

    History will not be kind to these card carrying conflicted neurologists. It is an honour and a privilege to help one’s patient and it is not their right. Many willfully ignored their Hippocratic oath which stated “practice two things in your dealings with disease: either help or do no harm to the patient”.

    By these physicians being compliant in using relapses and Gd+MRI changes as endpoints in MS trials and knowingly ignoring long term disability outcomes, they have broken their Hippocratic oath and should be ostracized from the medical community.

    • It wasn’t me who got the George Ebers letter, you can thank others, but thanks fr the kind words. You have made a challenge for ProfG, as he is surely one of those neurologists, who you are chastizing.

      Can you remember Coles A. Authorship of phase 3 trials in multiple sclerosis. Ann Neurol. 2018;83:653-655. I am guessing A is Prof Kappos wihich one was ProfG? I suspect ProfG does not see himself as a leech and a company lapdog and I am sure he is proud of helping bring a treatment option to people with MS, but maybe he will write/re-write a piece.

      I will say when I had a company and he acted as a medical consultant, although he was offered compensation for his effort, I do not believe every billed us. It is now too late. I suspect that if you find any neurologist who hasn’t fed from pharma hand, I suspect that they are not someone who you want to listen too. Pharma gravitate towards people who are percieved as being good. Those that are considered good and don’t have pharma involvment often have other conflicts. Although neurologists advise it is generally the compnay that decides what is done.

      • Thanks for the response MD. While I don’t always agree with what you say, I always appreciate your honesty.

        I am a physician and the following statement is just outright false: “they are not someone who you want to listen too. Pharma gravitate towards people who are perceived as being good”.

        The best and most respected physicians are the ones who put their patient’s interests and care first no matter what and without outside influence. Physicians make more than enough money to not be conflicted by Pharma. Pharma leeches on to those that will spread their propaganda, not necessarily the best or brightest physicians.

        If a neurologist doesn’t agree with what Pharma decides then they should never ever attach their name to it. Is all the money in the world worth their reputation?

        As for Dr. G., he has recently come out and openly stated in this blog that decreasing relapses and Gd-MRI changes (acquired immunity) do not equal stopping progression or the “slow burn” of MS linked to adverse changes in our innate immunity of the CNS. That earns my respect and wish there were other “card carrying neurologists” like this.

        I also wish whistleblowing physicians, like Dr. Ebers, would speak out publicly at the wrongdoings of Pharma right now, rather than when they retire. That way things change for the better now and not in decades.

        • Out of interest, which MS neurologists do you put on a pedestal?

          We can have a look at an ECTRIMS abstract and see their conflicts of interest. Are there any opinion leaders that say none? There are some big names that do not get involved with pharma, but they may have other conflicts

          OK I will also accept pharma get people who act as mouthpieces, they turn up and present the slides that pharma have made for them. I happily ask them questions, which they can’t answer because they haven’t thought about the stuff they present, and they look like idiots. I could name names but I won’t.

          rofG has said things that pharma dont like and yes relapses and gadolium are not necessarily progression because progression is a composite of fundementally differnt processes, but surely he is part of the Pharma machine as he is a co-author on a large number of pharma presentations, presents at a large number of pharma sponsored events such as ECTRIMS sponsored sessions. I am sure if he doesnt agree he says so.

          To be a whistleblower surely you have to have gone to the darkside to know what to blow. However, it needs to be said that in general people sign confidetiallity agreements before they recieve confidential data. Thereofore people are essentially gagged.

          • As there is not a single successful treatment for progressive MS, it is hard to put any of them on pedestals.

            I admire Dr. Helen Tremlett’s work from UBC but I think she is a neuroepidemiologist and looked at ineffectiveness of B-interferons in MS in slowing the disease.

            I admire Dr. Atkins and Dr. Freedman’s + Dr. Burt’s groundbreaking works on HSCT. The same goes for the early work on neural stem cells with Dr. Sadiq.

            I respect Dr. Steinman (natalizumab inventor) who warned Pharma of possible severe immunosuppression related infections before its release.

            Also, Dr. Coles and Dr. Compton for their works on alemtuzumab, which may curb conversion to SPMS.

            I also really appreciate the primed T-cell destruction of EBV laden B cells works of Dr. Pender.

            I realize your question is a trick question as some of the above are Pharma funded but there is a point when a physician does the right thing for their patients.

            For example, running a meaningful trial (ie. not comparing new drug to CRAB drugs or now teriflunomide) with meaningful endpoints (ie. not relapse rates and not Gd+ MRI changes rather looking at halting long term progression). Also, they should not be looking at “copycat” drugs with no proven benefit over its predecessor.

            If Pharma doesn’t want to do that then don’t sign the contract. Pharma only plays by the rules given to them. They can be curbed by ethical physicians, steering committees and approving bodies.

            What we currently have is an insane state of stagnant MS research with the only one continuing to suffer severely is the MS patient.

          • Well said DJHart

            A new drug for spms better be super-attactive, ground breaking,,,, many spms were rrms once we have tried many drugs, we have seen we have transitioned still going down, so we are disappointed , except, …… we just disconnected ourselves, that is why you only hear the noise of rrms.

          • Trick question. Yes indeed clearly some or.most benefit directly or indirectly from pharma.. I could say more but I won’t. However it is all very grey. Helen makes a point of her I dependence from pharma.

            I think Ted Yednock in addition to Larry deserves credit for natalizumab. As soon as the VLA4 antibody was made it was obvious to try it. We were scooped.

            . But ECTRIMS is on company cash

      • V good points people!
        I didn’t expect Barts to post such a controversial post, but was surprised it was labelled ‘Conspiracy’. A bit passive aggressive in my humble view.

        Seems to me he is was offering a logical, evidenced based neurologists view; and 6 years ago no one took any notice. And 6 years later he’s jaded with the fight and just wants to tend to his sunflowers?

        . We all passively sat back and believed what NICE, FDA and the pharma were saying.

        What more can he do or say when he is up against the rest of the medical community labelling his theories as ‘conspiracy’ and advocating taking the dmds; -although there are no facts as to the positive long term outcomes…. so yes I totally think it’s a conspiracy…. to lead us all to ultimate doom (which ms is as there is no cure) like lambs to the slaughter – but hey the pharma get away with it and generate billions for their immoral selves, while we all told to advocate (beg) the neuros to give us this shite. (Thereby limiting litigation)

        I’ve felt this to be the case for a long time, but it seems that no one is strong enough to change things ….perhaps even some happier being a full time patient?
        (Which is what taking a dmd becomes-full time)

        Or is it that we are too trusting,and not inquisitive enough; not vocal enough?

        Or maybe simply to fed up to join forces and facilitate a change. .(As you become tired of life, just at the same time you realise all Is not what it seems…)

        I would be interested to see what Prof Gs perspective is?

        • He’s jaded and wanted to tend to sunflowers…I think there are other issues relating to retirement, which I wont go into.
          However, let’s ask if there is a difference in MS clinics now compared to 30 years ago. You may get ProfGs view once he reads the post

          • “let’s ask if there is a difference in MS clinics now compared to 30 years ago”

            Dr. G’s words- >1 million wheelchair users. How many more transitioning to progressive phase of MS. Not including PPMS, current stats showing 80% of RRMS convert to progressive stage of MS by 15 years. This likely makes over 50% of MS cases progressive for which very little, if anything, can be done.

            My guess is Dr. G is not seeing many of the progressive patients as he has nothing to offer them and they have left his practice back to their family practitioner.

  • I didn’t expect Barts to post such a controversial post, but was surprised it was labelled ‘Conspiracy’. A bit passive aggressive in my humble view.

    Seems to me he is was offering a logical, evidenced based neurologists view; and 6 years ago no one took any notice. And 6 years later he’s jaded with the fight and just wants to tend to his sunflowers?

    . We all passively sat back and believed what NICE, FDA and the pharma were saying.

    What more can he do or say when he is up against the rest of the medical community labelling his theories as ‘conspiracy’ and advocating taking the dmds; -although there are no facts as to the positive long term outcomes…. so yes I totally think it’s a conspiracy…. to lead us all to ultimate doom (which ms is as there is no cure) like lambs to the slaughter – but hey the pharma get away with it and generate billions for their immoral selves, while we all told to advocate (beg) the neuros to give us this shite. (Thereby limiting litigation)

    I’ve felt this to be the case for a long time, but it seems that no one is strong enough to change things ….perhaps even some happier being a full time patient?
    (Which is what taking a dmd becomes-full time)

    Or is it that we are too trusting,and not inquisitive enough; not vocal enough?

    Or maybe simply to fed up to join forces and facilitate a change. .(As you become tired of life, just at the same time you realise all Is not what it seems…)

    I would be interested to see what Prof Gs perspective is?

    • I agree with all of the comments here – what a bunch of clever, verbose, intellectuals you are.
      I, on the other hand got flummoxed by the Apple update and double posted, apologies.
      And the comment about the sunflowers pertained to Dr Embers pointing them out on a video I also watched. Sorry for my flippancy; but six years later; I can’t believe Dr Embers and his theories havnt been spoken more of, as they seem to make a lot of sense, as well as controversy.
      So what next ?
      What can we do? The very fabric of the alleged truths we have been told to trust have been undermined, it continues to shake my world and get under my skin.
      But I am comforted by knowing that the best intellects in the world are on it.

    • Like so much pertaining to MS, a depressing read. But not so much because it’s MS-related, but because it shows how many intelligent people are no more ethical than less intelligent people, just better at crafting rationalizations when they abandon those ethics.

      I found it enlightening to finally hear it stated outright what many of us out in the real world have noticed (if not articulated) that there is NO solid evidence that any of the MS meds slow either time to progression or once so classified, rate of progression. And yes, those are the real endpoints that matter to me (at just shy of 57) and apparently, to many other MS patients. I find it self-serving in the extreme that the drug companies get to decide for patients, what outcomes matter. A clean MRI/NEDA is great and all, but if it doesn’t translate into a reduction of time to, or severity of disability, why have we taken the substantial risks associated with many of the MS meds? Oh that’s right, because the people who run drug companies and the compromised academics and doctors they employ, are greedy and set the endpoints, fiddle with definitions, and will twist the data and the people (if they can, and it looks like they do a great job of that) however they can to get the money and recognition.

      I wonder, had he known in 2013, what Ebers would have said about the amounts of money paid out by pharma to MDs in the US, a topic he didn’t address, really couldn’t address. That data was not readily available then, being right about the point in time that the ACA mandated public transparency about pharma payments made to doctors. Also sickening. One of the MS docs in my town usually pulls down around $160,000 a year in pharma payments. Which is chump change for a (patient) popular celebrity MS doc on youtube, who regularly pulls down somewhere in the $370,000 a year range, and has for the last 4 years. Conflicts of interest indeed. So the influence of money reaches ALL levels, even into the clinic. And even my current doc, who doesn’t appear to be significantly on the pharma dole just yet, tell us patients as an article of faith, that “It’s been shown that MS meds slow progression.” Most people accept it as such, but many of us out here are not the incurious childlike supplicants too many docs think we should be. My doc and I have already agreed to a date to “have a fight” about me stopping my med. (He assumes I’m going to start a new one. No.) I’m so looking forward to that. Not.

      • Ah, well it appears (from the youtube video) that Ebers does have a pretty good idea of how so many docs are on the dole. But seeing the level of it laid out in actual numbers is gulp-inducing. Any US readers should look their own docs up. It can be quite the eye-opener.

        https://openpaymentsdata.cms.gov

        • Yes this is If interesting (in UK on the dole means unemployed..I guess you mean kickbacks). However I think these are not all payments for personeel cash, but I think travel meals taxi other stuff, it all gets allocated. G

          • Yes, I mean kickbacks. Or payments far in excess of what is reasonable for what is done. I’m also thinking that most of that roughly $370,000 a year is NOT mostly travel/meals/taxi/other stuff. Of course plush payments like that are not unreasonable to the pharmaceutical companies, whose accounting departments assure them that they are getting good value and a fattened bottom line from those payments. Or unreasonable to the docs who already think they are the smartest most valuable people in any room, and who have ditched basic ethics (all the while assuming it’s only OTHER docs who would be influenced by money, not THEM) . Drug companies aren’t paying those fat sums because those docs are nice guys. They are paying them precisely because they KNOW that the docs prescribing behavior, and the things they tell their patients, are influenced by that money. Most patients don’t know their doc is getting another probably larger salary from (maybe multiple) drug companies. When they find out, it changes how they view the entire medical profession, and not in a good way. It certainly did for me.

            Bottom line, it doesn’t matter what the money is supposedly for, whether it’s a gift, or a service provided by the doc (working on a trial). All such monies mean the doctor has a serious conflict of interests, and likely is indulging in some “magical thinking”.

            This is good piece on the subject at the NYTimes. They have a paywall, but you get a few freebies a month from them, so enjoy!

            https://www.nytimes.com/2014/09/09/upshot/doctors-magical-thinking-about-conflicts-of-interest.html?searchResultPosition=1

      • $160,000 is chicken fed for some docs in the millions. However remember what ProfG says, that Prof Ebers makes his views based on research of interferons and copaxone and we know they are not that great

        • I do believe I said that $160,000 is chump change. I’ve spent rather a lot of time perusing that open payments database, and yes there are much MUCH larger payments, mostly to cancer docs and one other specialty that I can’t recall right now. Although, to a disabled MS patient struggling to pay for the basic necessities, $160 grand doesn’t look chump-like at all. It’s a slap in the face. Basically, it doesn’t matter the amount, $50 grand or a cool mil. Being influenced by that money actually starts at a very low dollar amount.

          I’m not sure what you mean by referring to interferons and copaxone. Ebers may be out of date some, but are you saying that there is something more solid than “it suggests” or “it may” that can be applied to the assertions made by docs to patients currently, that the newer meds are altering the time to progression or speed of progression? Which newer meds (other than Lemtrada, which gets flogged daily as the latest Wonder Drug!)

By BartsMSBlog

Translate

Categories

Recent Posts

Recent Comments

Archives