Hi, I’ve been having some real deep thoughts and feeling about MS Recently. I am not diagnosed but have symptoms. My dad has RRMS. I’m in a very conspiracy theorist way at the moment but convinced it’s true.
Like a lot of illnesses and health conditions, treatment & drugs cost a lot of money to to try and keep people well and as healthy as they can be. Multiple sclerosis is being researched, funded and lots of new treatments are being released. But no cure? How come? It’s the same as cancer? Pharma companies need people to be sick to make money. As much as this sounds bad and awful. It’s true. If a cure was found for MS no more treatments needed or would people still need treatments?
What if everyone decided to stop taking DMT’s? It might not be the most sensible thing to do in the short & mid term because there is a very high chance the condition would progress? But what about the long- term impact……pharma companies start to see revenue figures fall because these DMT’s are not being used, Problem is they are so used to the revenue stream. They are comfortable. What if people said no to DMT’s, they want a cure, what are peoples thoughts and opinions on this? I really believe this for most illnesses when they are “No cure”. What are your thoughts? Thanks for listening?
I have had aggressive MS for 20+ years and thank my lucky stars daily that I got my dx when DMDs were becoming available. I have been on them for years, switching up when needed - Tysabri for the last decade and counting. My MS was taking lumps out of me and I was accumulating disability at an alarming degree. Now I’m not. I shudder at the thought of the shape I would be in by now without DMDs. This is not a game and it is not a thought experiment. It is real life and it is bloody serious. Sorry to sound grumpy. Us old timers can get that way when youngsters seem to be taking for granted DMDs and the amazing advances they represent.
I don’t believe for a second they wouldn’t cure it if they could. Is it only pharmaceutical companies that run trials? No. Charitable organisations run medical trials too and why would they care about pharmaceutical profits?
Personally I am beyond grateful to have been diagnosed at a time when I had plenty of treatment options to choose from, which have kept me well ever since.
Very thankful for my treatment and health it is giving me.
What I would like to speed up is a glandular fever vaccination, so my children can have it and I can have peace of mind that they are as protected as can be.
I hope I don’t sound too blunt. Your post was interesting and I love a thinker! I just can’t agree with it when I have benefitted so much from the drug I take…not sure many people in my position would to be honest x
I am sorry if I offended anyone but I do think a lot as you can probably tell and I don’t agree with most things that go on on the world. I question everything.
Do I have a point though? I think I do. Of course DMT’s work and the proof is there that they work in so many cases and helps so many people. I am so happy they exist in the first place, as it could be worse and was worse many years ago. I have no doubt they serve a real purpose. But my point is, what about all the research that goes into multiple sclerosis? Still no way of figuring out why the immune system attacks the myelin? Still not figured out how to repair myelin and insulate the nerves again? I know there are trials for some of these things at the moment but there seems to be so many trials going on but still no cure just “slow progression”. To me it just feels like it’s not enough.
I read an article on revenue forecasts prediction for pharma companies on multiple sclerosis by 2030. Complete cash cow for businesses. It’s unacceptable in my opinion. if your someone like me that reads about functional medicine, diet and foods. The correlation between food and pharma is huge.
I think most of us are led to be believe this is how it is and there is no cure, however I don’t believe it for a second
Thank you for reading and listening to my rant, I needed to get all of this off my chest. As for reading this post, my heads in a weird different place recently and this forum lets me vent. Appreciate everyone Thanks
I think you are conflating things a bit. Of course you are quite right that folks make a lot of money out of making people fat and sick with their lousy food-like substances and keeping them that way by making their junk as addictive as possible and then chronically medicating them to take the edge off the inevitable with long-term meds while fixing nothing. And that clever large organisations have the whole cycle covered and are doing very nicely even if they don’t end up going to heaven. It’s a great business model, no question. Thus far, I’m with you. But that’s a long way from thinking there’s an evil cabal who is deliberately suppressing a cure for MS and that all the scientists and researchers are either fooled themselves or deliberately making haste slowly because they’re in on it. We’re well into tin-foil hat territory there, I think, not to mention being a wee bit insulting to people devoting their working lives to making us better. But you’re entitled to your opinion, of course.
I do understand your position. I read once for example that a run of the mill antibiotic had been show in a small number of people to be as effective as a DMD but that a large trial on it is yet to be done, because there is no profit incentive for a pharmaceutical company to run such a trial.
So there is obviously a problem there.
And a larger problem in society where a doctor who tells someone to follow a healthy diet, exercise and take steps to reduce stress such as meditate is seen as really ‘out there’ but we don’t bat an eyelid at shoving all sorts of medications into our bodies. I do think the future of healthcare will be more holistic in this respect.
However there are many organisations that don’t have this profit incentive and I do think that they are doing all they can and making remarkable progress. Take the glandular fever vaccination I mentioned before for example, that really could provide a cure. Recent studies have shown the development of MS to not be possible unless the body has been previously exposed to that virus. Too late for us but a potential eradication of the disease for future generations.
So they are getting there!
So I have missed something, are they defo saying glandular fever causes MS, because I haven’t read that, only that it could, I haven’t had it, but was diagnosed straight in at SPMS, so why did I get it ? I personally don’t think someone wouldn’t want to say …HURRAY , I found a cure for MS, but what so I know Take care and keep smiling.
Jean
Back then when I first started on DMD, I had choice of Rebif or Avonex and that was it I think.
There seems to be more MS treatments out there today, which is a good think, as we’re getting closer to the cure perhaps.
Macmillan Cancer Centre, where I go for check up, not for my MS, had to put Ofatumumab (Kesimpta) on hold when drug company quadrupled price --they did this after rebranding it for MS treatment also.
I’m still waiting to start on that DMD. I hope drug companies are not seeing MS treatment as a boon for their coffers.
I’ve done a lot of research. There is great researchers and scientists out there who dedicate their lives to these type of things and the work they do is amazing. My point is that they way the world unfortunately works is revenue and profits come first, not emotions or people who are sick/suffer. It should be the people who are sick come first. Let’s just say they found a cure? And distributed that cure worldwide? Imagine the impact that the cure would have on pharma companies (less money), neurologists (less management of the condition, meaning less work), charities, workers, this does not just go with MS. This goes for almost everything. The health care system try to treat and manage health conditions through medication and drugs which cost money. I have no doubt that the work that has gone into MS research and it has come along so much in the past decade and recent years but I just think there has to be more they can do, if people who have MS could really let the people at the top k ow how impacted they are by the illness however they are deciding to not use their drugs anymore they wouldn’t be too happy would they?!!! Am I the only one that truly sees this and know how all this stuff works? Again long post thank you for reading
Dangerous assertions there. Ok i a have relapse remitting ms since 2007. Its a bugger, while i can kinda see the bigger picture you are hinting to i dont agree with it.
IF it is all money driven then the argument is flawed. Why? IF there is a cure and i pray there is one, the government would be all over it to SELL to the rest of the world and make a fortune
[quote=“greenhouse, post:10, topic:72712”]
So I have missed something, are they defo saying glandular fever causes MS, because I haven’t read that, only that it could [/quote]
“They” aren’t saying that. What they are saying is that EBV is common to both conditions. Research has not yet found a definitive answer to why EBV activates in some people to trigger either Glandular Fever or MS.
EBV is present in most people but is inert and some researchers are saying that MS cannot happen without EBV, so it has a role in there somewhere. I’m particularly interested in this outcome, having succumbed to both! GF aged 19 and MS in my 50’s.
GCCK…I do have EBV, had it since childhood and that’s what I believed my link to be for getting MS, but I suppose until their really certain that’s just my guess. I got MS in my late 40’s, but had a diagnosis of Iritis at 30, then the years in between suffered with little things that I just ignored, but hey we’ve all got our stories and it doesn’t change the fact I’ve got progressive MS, which sadly is doing just that.
Jean
I was interested to find this. It seems that most people have evidence of EBV exposure, but almost everyone with MS does.
In fact, more than 99% of MS patients have EBV antibodies in their blood, indicating a prior infection, compared with 94% of healthy individuals. But despite this epidemiologic correlation, scientists have struggled to prove a causal connection.24 Jan 2022
Interesting fact alison100, like I said I have EBV + around the time I was diagnosed with Iritis I also had a bacterial gut infection, which I remember my GP saying at the time was an usual strain of gut infection, the bloods to detect this took over a month to come back, is there a link, who knows.
Jean
Thanks
Take care and keep smiling.