Last reply 5 months ago
MS Drugs

Hi!

I am new to this forum and I want to share some important information with MS patients and their families. My name is Matt Embry and I have MS. I have recently completed a documentary about MS that is being seen all over the world and I want to share an important scene that I think everyone with MS should see. The scene feature Dr. George Ebers. Dr. Ebers is one of the world’s top neurologists and the information he shares in this scene is VERY important to consider:

I look forward to people’s thoughts.
All the best and God bless,
Mathew

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mmhhpp
5 months ago

@mattenbry

Thanks again for your video very very interesting . As I said this is a bubble to be burst. Prof Ebers is known in Oxford. Very credible and respectful man.


aabreu
5 months ago

Good job on the video.
Yes. Money corrupts. And these rent seeking pharmaceutical companies are despicable. No money in cures. Right?
However…..


seanachai
5 months ago

Hi @mattembry

Can we get access to full video ?

Regards, S


mmhhpp
5 months ago

@seanachai

The same video on YouTube https://youtu.be/i0m_isndqc0

Also from Professor Ebers this video on YouTube which is worthwhile seeing From 2013

Xx


seanachai
5 months ago

Thanks !


salvador
5 months ago

Thanks very much for this, @mattembry . As I get older, I’m realising more and more that the whole Western world is run on a series of interconnected rackets, designed to concentrate financial resources into the hands of a small group of bastards with no interest in the wellbeing of their fellow humans.

War, pharmaceuticals, food, oil, finance, media – they’re all run for the benefit of the oligarchs (not just the Russian ones). The abomination in the Whitehouse is just the most visible of these people because he makes no attempt to hide his despicable character. In the UK we have May, Rudd, Johnson and Hunt running a kleptocracy of epic proportions, who will take Brexit as an opportunity to sell off our beloved NHS to their own kind.

I haven’t been offered any medication for my MS, at least in part because my consultant neurologist is an honest man. I wouldn’t accept it even if it was offered, unless someone could show me positive results from the sort of long term studies the pharmaceuticals companies refuse to fund.

I’d encourage everyone to take full responsibility for managing their condition through rest, exercise and diet, and to be very sceptical about any treatment that comes in a tablet or a syringe. They don’t care about you.


dawood
5 months ago

I have ms and use Rebif 44 I really confused by this video . And taking decision to stop or cuntiue Rebif preaty difficult! And trust these all medication put me in trouble!!! What to do ???


henriette
5 months ago

I’m also using Rebif Interferon beta a. I also considered stopping the injections but my husband googled and found comment about a lady who stopped this medication and her relapses came one after the other. So now i am really confused and although i’ve had this since about 1986, i never really experienced severe or any pain (was only diagnosed in 2016 but my neuro checked back on my medical history and old brainscans) until i started using these injection. Now i have to take painkillers on daily basis and before this, i couldn’t even “remember” to take my eltroxin on daily basis because i hated pills and never took painkillers or sleeping pills or anti depressants. My mood swings are out of this world and very much unlike me. Please someone advise!! What are we supposed to do? Was in hospital last week because of relapse and had three days of solumedrol.


mmhhpp
5 months ago

@dawood

@henriette

I think once on medication you should not stop without medical advice and control. For instance fingolimod can lead to rebound effect….which i have suffered twice, what it means is that when doctors offer medication we should ask all the questions not just take it. Difficult when we are feeling bad …. we just hope all this medication will be good

Prof Ebers has a good point the medications do not delay spms and they do not stop spms . This is what we should ask doctors

Now that after 7 yrs (5 in reality) i have spms despite of being on fingolimod i started to doubt about ms drugs….

I am confused too .


mmhhpp
5 months ago

Last thing

If we patients were more demanding and not taking drugs that do not offer real benefits this crap drugs would not be there and pharmas would be forced to find good ones or a cure, but how can we do it when feeling so vulnerable?


rwiebe62
5 months ago

Hi Matt,

I’m going to play devils advocate here a little bit, because I think what you’ve brought up is very interesting. But my experience seems to suggest otherwise. I have had MS since March 2015, my symptoms started in December 2014. Up to when I started Tecfidera in May 2015 I had a relapse a month, since I have been on the medication I have had 3 relapses in almost 3 years now. Is that then just a coincidence? Now I know this isn’t long term proof, but it is a ‘risk’ I am willing to take to live currently with less relapses.

In the video you refer to the lack of evidence for ‘long term’ effects of the medication. I’m just wondering how long these medications will need to be monitored for long term issues before you are satisfied? 5 years? 10 years? 50 years? What do you suggest people who have active relapsing remitting MS do if they do not try drugs? They just have to deal with it?

I have visited your MS Hope website and I find the diet information very interesting (recommend watching the videos), as someone who has been on and off of a strict diet since being diagnosed I will agree I feel much better when I am eating healthy. But MS or not, doesn’t everyone benefit from a healthy diet? Is there long term evidence that a certain diet affects MS?

I will definitely agree with your comments regarding the revenue stream for pharmaceutical companies, and that it is much more valuable for them to create a medication that we take long term rather than a medication that might cure the disease and only be taken once. But at this point in time I also think that these medications are the one thing that give people struggling with active MS relapses the feeling that they are doing everything they can to fight the disease.

Thanks again for the post, I think anytime we can add a different tool to our belt it will help us make more educated personal choices to deal with our MS.

For the record, I am an accountant, I don’t work for any pharmaceutical companies and get no financial gain (unfortunately) out of sort of defending them if you want to look at it that way.


nutshell88
5 months ago

@mattembry Thank you do much for proving the worse take over their temporarily benefit. I’m a lady from Saudi Arabia my parents never told me I have MS went to the neurologist and the dr told them secretly it was their request i was just 17 thats why
I found out after 5 years free of relapses or medication but when i knew i have MS I requested Rebef and relapses bruises never stopped. It dragged my uni grades down bottom. Went to america prod said i should take tysapri or I’ll be bedbound on 2011 I stopped rebef and not planning to take any other drug
After i stopped it i suffered relapses the first few months. But now
Since 2015 im off relapses completely.my neuro stopped making appointments for me do often because my MS is stable traveled to the uk to study aline forgot to mention never took any drug i stayed there 3 years studied nd worked there with my polite MS. Im living my life more than normal for sone one daignosed 13 years ago now im 30 years old and I have a job I feel MS hates to be harrased by thinking worrying or by drugs even. Be safe all if any of u left their drug dont be superstitiousby any feeling you get in ur body or heaviness just beat it and continue doing whatever you’re doing.

Sorry cor typing this much

Be safe all of you


rachaellouise
5 months ago

@mattembry

Hi Matt. I was diagnosed in July 2017 and am not on treatment and weighing up what to do . I have been doing as much research as I can since diagnosis .
I am actually following Dr Terry Wahls protocol .. and incorporating lifestyle changes and adjusting to it.

What I am interested in is learning more about what you have done as you are not on treatment and had it over 20 years then maybe we can follow some of that or incorporate it in to other things we are doing.

The film is definitely thought provoking and needs to be addressed .
How things are isn’t right or fair on vulnerable people , making huge profits and not delivering results for people with MS . It would be great if they could put the money into the cure
I wonder what do you hope to do next now the lid has been lifted . What do you have planned next to do after the film in order to make changes to how it currently is ?

I admire your bravery because it takes guts to do what you have done but it needs people like you to have a plan and not be scared to implement it .

Rachael


mermaidia11
5 months ago

OMGOMGOMGOMGOMG!
@mattembry

Reading your post was a bit like finding a unicorn in the back garden…
And I entirely agree @salvador, entirely.

I discovered and watched Matts journey to Italy about six months ago and made an enquiry here, because what you and that amazing nasa neurologist made more sense to me than anything I had read in years.

It was intelligently articulated,by you; a fit (understatement) articulate healthy man, with crucially; no ulterior motive

I was sooo excited ….. hope bubbled within me, and so I researched you, Mr NASA and ccsvi… wow

I actually thought twice about posting, (it crossed my mind that I’d then imminently get bumped off by a pharmaceutical shareholder lol but the gods at barts absolutely discredited it. And hope fizzled.

I thought no one would ever hear from you/about it again . I subsequently think I ended up compromising, and enquired about
hyperbaric oxygen therapy.

Working on the basis that perhaps it would get more oxygenated blood to my brain. (It was yak and didn’t work at all btw)

My excitement soon faded when I got an apathetic, lukewarm response from the MS world.i soon found out why.

(Well shot down in flames) counter arguments and conflicting evidence, closer to home; by eminent neurologists, who conveniently ignored a crucial piece of the jigsaw were sited. Funny that isn’t it?

That crucial piece, in my view; is that the NASA equipment in italy is fine tuned to do this procedure correctly.

And no one else’s is, in layman’s terms and to keep it simple. (Forgive me if I’ve got this wrong, but that’s my understanding.)

This was overlooked, as us MSers were told categorically; by other neurologists of apparently independent origin; that this treatment did not work.

It’s put us all in very difficult positions for different reasons. And through no fault of our own.
We are indoctrinated to believe that the doctors are impartial independent practitioners, with their patients best interests and well being at heart… As we should and have to.
And these people talk of relapses and stopping them – and it is compelling. They cajole us with fear.

And for nearly all, the promise of calming down this illness and prolonging the good years, by a trusted doctor who you assume has your best interests at heart, lies at the heart of all the decisions made to take these gruelling ‘dmds’

I would estimate that over half of the posts here are regarding side effects from these dmds, not the actual illness itself.

Your videos have blown the doors off a lot of people I suspect.

So Whilst u might get a lukewarm response here, you can see why.

However, There are more than a few extremely intelligent individuals here and so I hope that they consider your films too and come to.

Like everyone.

It’s time we all unite and start fighting back, right?
And it’s a amazing fight back to open with. @mattembry
A-fantastic bit of researched evidence, not wishy washy maybe talk.

Facts from incredibly intelligent people. with no ulterior motive btw.

I would like to personally and sincerely thank you for this, for having the courage of your convictions, for presenting to us, (in a pretty much water tight format, evidenced succinctly) for not giving this up,

(I can’t believe it’s you! Amazing, thank you Mr Emery , respect ( and well,,you’re beautiful frankly).

I would go to Italy in a heartbeat, if I could and it was possible?

Please could you give any more information about having the treatment. Is it even available at all in Italy with Mr Zamboni ? I’ll google it

I’ll be the first to say I would definitely have it done. I’ve spent 20 years trying to explain why I won’t have dmds, and getting heartsore at the amount young lives compromised .

Enough!

Thank u Matt – handsome hope💕🌈🎉😇🎉💕


mermaidia11
5 months ago

OMGOMGOMGOMGOMG!
@mattembry

Reading your post was a bit like finding a unicorn in the back garden…
And I entirely agree with you @salvador, entirely.

I discovered and watched Matts journey to Italy about six months ago and made an enquiry here, because what you and that amazing nasa neurologist made more sense to me than anything I had read in years.

It was intelligently articulated,by you; a fit (understatement) articulate healthy man, with crucially; no ulterior motive

I was sooo excited ….. hope bubbled within me, and so I researched you, Mr NASA and ccsvi… wow

I actually thought twice about posting, (it crossed my mind that I’d then imminently get bumped off by a pharmaceutical shareholder lol but the gods at barts absolutely discredited it. And hope fizzled.

I thought no one would ever hear from you/about it again . I subsequently think I ended up compromising, and enquired about
hyperbaric oxygen therapy.

Working on the basis that perhaps it would get more oxygenated blood to my brain. (It was yak and didn’t work at all btw)

My excitement soon faded when I got an apathetic, lukewarm response from the MS world.i soon found out why.

(Well shot down in flames) counter arguments and conflicting evidence, closer to home; by eminent neurologists, who conveniently ignored a crucial piece of the jigsaw were sited. Funny that isn’t it?

That crucial piece, in my view; is that the NASA equipment in italy is fine tuned to do this procedure correctly.

And no one else’s is, in layman’s terms and to keep it simple. (Forgive me if I’ve got this wrong, but that’s my understanding.)

This was overlooked, as us MSers were told categorically; by other neurologists of apparently independent origin; that this treatment did not work.

It’s put us all in very difficult positions for different reasons. And through no fault of our own.
We are indoctrinated to believe that the doctors are impartial independent practitioners, with their patients best interests and well being at heart… As we should and have to.
And these people talk of relapses and stopping them – and it is compelling. They cajole us with fear.

And for nearly all, the promise of calming down this illness and prolonging the good years, by a trusted doctor who you assume has your best interests at heart, lies at the heart of all the decisions made to take these gruelling ‘dmds’

I would estimate that over half of the posts here are regarding side effects from these dmds, not the actual illness itself.

Your videos have blown the doors off a lot of people I suspect.

So Whilst u might get a lukewarm response here, you can see why.

However, There are more than a few extremely intelligent individuals here and so I hope that they consider your films too and come to.

Like everyone.

It’s time we all unite and start fighting back, right?
And it’s a amazing fight back to open with. @mattembry
A-fantastic bit of researched evidence, not wishy washy maybe talk.

Facts from incredibly intelligent people. with no ulterior motive btw.

I would like to personally and sincerely thank you for this, for having the courage of your convictions, for presenting to us, (in a pretty much water tight format, evidenced succinctly) for not giving this up,

(I can’t believe it’s you! Amazing, thank you Mr Emery , respect ( and well,,you’re beautiful frankly).

I would go to Italy in a heartbeat, if I could and it was possible?

Please could you give any more information about having the treatment. Is it even available at all in Italy with Mr Zamboni ? I’ll google it

I’ll be the first to say I would definitely have it done. I’ve spent 20 years trying to explain why I won’t have dmds, and getting heartsore at the amount young lives compromised .

Enough!

Thank u Matt – handsome hope💕🌈🎉😇🎉💕


houdini
5 months ago

Ok. So coming from a health related profession and now on the other side as a MSer 😔 it has been a big challenge to decide treatment or no treatment. Any DMT yes has risks and side effects but if I deteriorate at least I know I have tried and based on the studies I have been shown by Neuro I personally feel I have not made a mistake. Yes scans next week will tell me if there has been any MS changes and if the DMT is doing anything. I also fully support any MSer that decides natural therapy is only what they want. It’s all about personal choices.
I do not feel there’s enough evidence that the DMT has no effect on MS otherwise NICE would not approve these medications for use. That’s my personal view, thought provoking film though.
Good luck guys and girls! 🙂


californiadreamin
5 months ago

@mattembry When my wife was diagnosed about 1.5 years ago, I stumbled across your videos and they were great and encouraging. I also tend to agree with your views on most ms societies.

Where I think I see things a little differently is on DMT’s. Your list of symptoms is pretty bad and it is nerve racking starting a DMT. However, the list of symptoms of MS is really bad as well. My wife started Tecfidera and she had some symptoms but they lasted a few weeks and then doesnt even notice it anymore.

Pharma to me is much like almost every other big company ou/t there pitching what they can legally get away with and hopefully not be sued for later. Its up to us as the consumer to be wary as possible, but in the case that dr ebers mentions, I think pharma companies have at least a reasonable point. When the first drug for MS came out and showed benefit short term, there was nothing else to compare to. How long do you go to see the results before people can start using it? 20 years? Thats a long time to wait. Should they be required to do a study when the drug wont even be the best drug at that point? Or it might be a generic? I think the various MS societies and governments should do a better job of providing data on the people that actually took these drugs. To run a long term study with people on a placebo would be pretty unethical if the drug was working in my view. Why not look at overall groups of comparable people from the large numbers of people that actually took the drug? Take Ocrevus today. Not a lot of data on it, but lots of people taking it. Is it important for Roche to run the long term study? I am glad its an option today. If Tecfidera stopped working, I would like it to be an option for my wife.

Lastly, there is some data on the long term effectiveness of these drugs. It might not be double blind solid data, but its trending the right way. However, regardless, what is pretty conclusive is the reduction in brain lesions. For my wife, I dont know what the long term effect of the drug is, but I am willing to bet that having more lesions isnt going to be beneficial. You can make an argument maybe its like paint on a car starting rust and it might not tell you anything about how the engine is doing, but maybe the two are related.

Anyway, always appreciate having an extra point of view. I think people should always rethink their positions especially in the light of new data. We also follow a natural path in addition to the DMT hoping that both will help. No way to know how it would have been on a different path and its great to see you doing as well as you are. Please keep providing the MS world with information!


mermaidia11
5 months ago

But the questio is, what do you and your wife think about Zamboni and ccsvi?
The dmds are old drugs, including the repackaged lemtrada; none of them stop it from advancing to SP…


strictlysoca
5 months ago

So Matt Embry here you are again with claims mainly based on CRAB drugs which many neurologists do not prescribe any more as there are many more effective alternatives. At the time of development that was the only treatment and I agree with you there were pressures on researchers and government agencies not to press for long term studies. Much of this is to do with money – we live in a capitalist system so that’s a no brainier.

What concerns me is that you generalise from Prof Ebers who is speaking about CRAB (things like interferon) drugs to all drugs. You are encouraging magical thinking about MS and an anti science conspiracy view of the world. You also promote a widely discredited treatment CCSVI.

I agree that none of the current drugs are without risk or potential side effects – reading lists of all reported side effects does not prove anything about effectiveness. Without effective DMT the progression of MS will be faster and more far reaching particularly with regard to brain atrophy. People will make their choices and some will choose not to take an effective treatment or be refused treatment because they have advanced MS.

I feel concerned that those looking for information will use your site to confirm their bias rather than get a reliable source of information about disease modifying treatment.


rachaellouise
5 months ago

@mattembry

I’ve been thinking about this a lot . You have lifted the lid on it which obviously needs to come out but what now ?
In order for things to change it’s people like us and other chronic illnesses would have to make waves for things to change. They take notice when their profits slide .
I’m more than happy to support this , I think others need too as well .. ultimately we want cures not drugs that people take everyday for life .
A cure a cure means gone no more drugs !

Practically and sustainably how do we unite for good ! How do we fight back ?
I’m doing what I can in my own life and making tweaks to my overall plan but I know changes cannot occur alone . I know changes only occur together …

I’m not going to sit back and let this disease ruin my life when more can be done …


teresapascolat
5 months ago

What can I say??
Just that I COMPLETELY agree with Salvador, absolutely!
Personally, my ms was still RR when I decided that I really preferred to live my life as it came rather than put it in the hands of any DMD…of which the side effects alone made it unbearable, at least for me, used to being independent… I lasted 6 months both with Copaxone and much later on with Interferon. I managed not to commit suicide, but only because it was difficult to find the right situation to do it…
I have found another way to live IN SPITE OF MS!😝 ANOTHER WAY to LIVE!!
Yes, I can only walk aided or leaning on to something. Fatigue is the biggest thing I must consider all the time. I well know that one of these days I will have to face other challenges but since I don’t have a crystal ball I’ll find out when I get there! NO point thinking about it now.
I had CCSVI, after waiting 2 years, in Catania, Sicily, in 2014 (by prof. Veroux); well, I was an independent walker then and I am not right now, but others may be the benefits
and I will never know.
Would I go the same way? Yes and absolutely yes.
I do not accept to be told what to do by anyone who considers me just an incompetent piece of…meat. Sorry, I make my life, hard maybe, but MINE.


californiadreamin
5 months ago

@mermaidia11 Regarding your question on CCSVI. When my wife was first diagnosed I was actually wondering if she should consider it. The data was a bit mixed, but I thought it was an option to surely consider. In the last year more data has been coming out that makes me think its less likely to be effective and so I would now be reluctant to consider it (though its really up to my wife in the end). I would think our next best option at this point would be Ocrevus and then stem cell treatment. She has MRI’s in a couple weeks and if there is progression we would think strongly about something slightly riskier and more effective. Right now on the outside there doesnt seem like there are signs of progression. Regarding CCSVI, there is enough conclusive data that it doesnt stop progression either for lots of people. Maybe it helps some, but its definitely not stopping progression in the kind of numbers that HSCT seems to.

Anyway, thats my thoughts and I am not tied to any particular option, just want to optimize the outcome for my wife. If tomorrow someone found out that CCSVI work really well by making some adjustment, we would totally rethink everything.

Anyway, I am hoping this will all be something we can look back on because I am still crossing my fingers that this will be a pointless debate because the cure is at hand. I am hopeful it is the following drug and its super safe because it targets specifically the cause of MS:
http://www.atarabio.com/pipeline/ata188/

Its based on Dr Pender’s work which really showed actual improvement with advanced MS (SPMS and PPMS). Its a small number of people, but people stopped progressing or actually got better.

https://www.medscape.com/viewarticle/879140#vp_2


easycleanpress
5 months ago

I think that video looks like a great project.

I think we should all be sceptical and really think about what DMTs we take. Personally I couldn’t find any easily accessible data on the long term risk of cancer, serious infections ect in the long term immunosuppressive drugs which ruled them all out for me – why would that data not be available easily if you have a compromised immune system these risks will surely be higher!

If you want to be pro active with MS in the meantime learning about the peer reviewed scientific studies on diet would be my recommendation. Mic the Vegan on YouTube does a lighthearted overview of the studies https://youtu.be/kZ5NGLM1k90 but as always stay critical look into the research and more documentaries like this will only improve the landscape whether we agree or not let’s start a discussion and create a more informed MS community!

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