THERE IS NO MONEY IN THE CURE!

[hargarah]

Day after day, I read through MS chat rooms, to find something that would give me hope...but it has been over 20 Years that I have had MS, and the truth is that NOTHING works and that NOTHING new has been developed. I am still on the some interferon, not because it works, but because it is profitable for drug companies. Furthermore, it is highly profitable for the Government too, as they get to tax the drug companies and make enormous tax profits from the drug industry. Why cure MS, when they can keep us sick and live lavish lifestyles over drug sale profits and bonuses!!??

The truth is simple: STEM CELLS would be miles ahead and probably at the "cure" level, if they could be patented and privatized. But the Government won't allow this, so I suffer and my disability continues, as small tests on mice and other crap are done, in low-funded universities and public labs, while the cure lies in allowing these stupid drug companies to make a profit by allowing them to patent stem cells!

I now walk with a cane, and soon a wheelchair is in my future, while drug company executives enjoy vacations, yachts and caviar, on my account and pure Greed.

Here is the answer, plain and simple. In order for anything to happen in our lifetime, MS patients must do something revolutionary! Either we stop using these profitable meds, so drug company profits and Government taxes fall, or we revolt against the law to get attention.This is the ONLY way we can get attention and force the laws to change! I am a very smart guy and highly educated...so this is not a stupid rant!

MS Patients have to force change...or else our disease will continue...

Please share ideas on how we can FORCE CHANGE and don't remove my post...as it is the damn truth...we have to piss off the Government and Drug Companies to force change!!!!

[1eye]

I'm afraid that in my case at least, you're preaching to the converted. It would be nice to see us sickos get up onto our hind legs or wheels or whatever, and show the pessimists we can do this better than they can. I've had it for 20 years too, and I remember a nurse when I was first diagnosed saying, don't worry this will soon be cured. Unfortunately had been hearing that about cancer for most of my life already. When does 5 years = never? When you're talking about MS.

It is much more profitable to drug companies if they do not find a cure. The early light bulb companies all went bust until they figured out how to make them burn out and break. If any neurologists with MS are listening, this means you. And if your mother has MS, her too.

[1eye]

I just wanted to add a couple of things. For those feeling any self-pity about having MS, here is a cure for that: http://www.thisisms.com/forum/general-d ... 13138.html. I know it is not 2013 any more, but some things don't change.

I wanted to share the experience of hallucinations. One of my go-to meds that I thought was harmless, and was on since the beginning, may have caused it. A rule about hallucinations: it is a very hard road because characteristic of them is that you think you are right and everyone else (everyone) is wrong. My GP told me that you cannot be convinced. This is true. One thing that may help is convincing yourself that if you just take a small bit of some otherwise harmless (placebo) medication just once, the problem (whatever you think it is) will be banished. In my case, one of the first episodes of "House MD" had me convinced that a single dose of some medication would fix the problem. It did.

But let me tell you how bad things had been. This was a visual hallucination somewhat like migraine aura. I could see very fast-moving dots. Sometimes these were very large, like projections of insect-like shapes on a living room wall. These were not moving, thanks be. The moving ones were visible nearly always. They would deprive me of sleep for days because I could see them with closed eyes, at any light level. The horror was that no matter what I did I could not will them away and they would not let me alone. Very infrequently I would fall into a non-restful sleep. I thought either my MS was so bad these really were nerves gone bad in my eyes, or they were really some kind of monstrous invasion in my eyes. I was very sleep-deprived. Sleep deprivation is often a more powerful motivator than almost any other emotion. You will do and say things you otherwise would not dream of, if you think you can get away with it and go back to sleep.

The problem with hallucinations is that logic, words, argument, will not make them go away. I hope no-one else has to go through this. Maybe psychiatrists can prescribe something. But I am hard to persuade that I need mental help. Almost impossible. Catch-22. If you think you might be having them, believe that you could very well be. MS, and some of its medications, can cause them. I sometimes think something like an elimination diet for meds might help. I occasionally take a "meds vacation" for a few days.

But whatever your current problem, it can and just possibly might, get worse, so be forewarned and be vigilant.

I know I am way off-topic. If anyone knows of some way to increase the militancy quotient around here, I think it is something we all need. All ideas are welcome. Civil disobedience is a powerful thing.

The truth is also very powerful. It is hard to stand in the way of someone with full knowledgeable possession of the truth. Conversely it is easy to spot a lie, most of the time. Use your bullshit detector. Everybody has one, though sometimes they rust from disuse.

[ElliotB]

"the truth is that NOTHING works and that NOTHING new has been developed"

The truth is that NOTHING we know of now is proven to work, although some motivated people seem to be doing well with some new and different approaches bit there is no way to know for sure whether they work or not at this time. More research is needed.

But at some point in time. the mystery of MS will be uncovered and a cure will be found. It will likely not be in the near future and the 'solution' may not be be as simple as a pill but someday the cause and the cure will be found.

"and that NOTHING new has been developed"

For the most part, this is very true... My dad was diagnosed about 50 years ago and really little more is known about MS now than was known then. Yet some 'new' approaches to diet and health not know of back then are proving to possibly be effective in improving health. Remember at one time everyone thought the earth was flat...

"THERE IS NO MONEY IN THE CURE!"

This will truly depend on what the cure is. But chances are the company that finds the REAL cure will be extremely well rewarded!

[DrGeoff]

OMG, the conspiracy fundamentalists are crawling out of the woodwork again.

Of course there is money in a cure. The first drug company to come up with a real cure will knock all the rest out of the market and make millions. You only have to consider the way in which Teva sought to delay approval of a new DMT so that they could get an extra 3 months profit out of Copaxone.

If you are an academic, there is money in a cure. The first cure will get the finder a Nobel Prize for Medicine, extended tenure, probably a Deanship, certainly a full Professorship, and a lot of research funding.

If you are a small researcher in a hospital, there is a lot of money in a cure. If, for example, Dr Coimbra can ever put a formal trial together, he will have the choice of either being Head of Medicine somewhere of of setting up his own clinic (and setting his own fees).

Find out how much Regenstem make and then tell me that there is no money in stem cell treatment, Just the notion that it might work is enough to have people queuing up at a clinic in Moscow. When someone produces "cures" that last for more than a few years, they will become cures.

Come up with a new diet, write a book and watch the dollars roll in. All you need is one (count them, one) person that you can claim as a cure. Absent a proper trial, no-one will ever know if it really was a cure, or just a long period of remission (McDougall, Wahls, Jelinek, for example). And at least one of those should never have had a Dx of MS in the first place.

Come up with a real cure, and write your own ticket.

Geoff

[David1949]

In my opinion there is no money for the pharmaceutical companies in finding a cure. Right now the crappy DMDs they sell for MS cost about $50,000 per year per patient. If they give you a cure what could they charge you for it? Maybe $50,000? But that's a one time payment. After that they never see you or your money again. So I think there is no financial motive for them to find a cure.

BTW I'm a capitalist.

[Luongo]

I work for a pharmaceutical company. I have been involved in the actual drug production process, have seen similar drugs to these made and are GENERALLY aware of the research and decisions made in terms of business.

I totally reject the 'curespiracy'.

Pharmaceutical companies are not squirreling away positive research to keep their cash cow going.

But their is still a willful stagnation in terms of research. It's much more cost effective to keep tweaking an old formula that sells well (even if the efficacy is highly dubious) rather than dumping tens or hundreds of millions of dollars driving your research off into the wild blue yonder which may lead no where. It's not a conspiracy... but it still sucks. The push for stem cells and medical marijuana and other things is so crucial because the big pharmaceutical companies need to be challenged and need incentive to break out of their comfort zone. Just my two cents

[David1949]

I'm not saying they have a cure they're not telling us about. I'm saying they are not financially motivated to look for a cure.
I think you just said the same thing.

[1eye]

The ideal drug must be taken for life, and costs a bundle. MS patients are seen as suckers who will take anything for life if some neurologist says they will not be better, just not as much worse than if they hadn't taken it. They seem to think because they run a lot of randomized placebo trials we will believe they have the power to predict our disease course. They don't. Everyone is unique. This is not heart disease. They have no magic powers.

There is a problem: that it is only if the agent under test has the potential to be an "ideal drug", that anyone will take an interest in it. Don't waste your life waiting for this process to cure anything. It will never happen.

I got my arduino and its peripheral accelerometer/gyroscope/compass chips. Will try it soon. I may do some volunteer work as well.

[1eye]

Doctors seem to be wimps who will never try anything that is at all risky. For heaven's sake they are afraid that stem cells will cause cancer... Stem cell research has stagnated because of George Bush, and the common use of 'homologous' cells, which are thought to be free from the bad Karma associated in some more primitive minds with embryonic stem cells.

But in spite of President Obama's clearance of that research, it is not announcing any progress. I guess we are hobbled by superstition. And stuck with the homologous. Granted there will be no host-graft problems with homologous cells. But will there be host-graft problems with embryonic cells? Is there any progress being made with donor-matched embryonic stem cells?

[centenarian100]

OMG, the conspiracy fundamentalists are crawling out of the woodwork again.

As usual, Dr. Geoff is correct

In fact, I will give some examples of curative drugs that have made pharmaceutical companies millions of dollars

1) Harvoni (hepatitis C cure by Gilead-they are absolutely raking it in). There will be plenty of new cases of hepatitis C, and gilead will continue to rake it in for the entire duration of the patent

2) Gleevec-first "designer drug" which significant improves prognosis and is over curative in chronic myelogenous leukemia (with BCR ABL mutation). They made a killing

3) Various antibacterials, antifungals, antiparasitics, and antivirals are often curable, and many have been quite profitable. Many of them have been extremely profitable (vancomycin, levaquin, et cetera)

4) All trans retinoic acid: a revolutionary treatment for promyelocytic leukemia. This was quite profitable.

there are various other examples. Have you guys considered that curing poorly understood complicated diseases isn't as easy as it looks. Why don't you keyboard warriors go grind it out in a cell biology lab for 5 years and then come back to me?

-cent

[David1949]

But major drug companies are already making a fortune selling the CRAB drugs that cost maybe $50,000 per patient, every year until the patient kicks the bucket. If they come up with a cure then all that money dries up.

[David1949]

I tried the Swank diet and the Wahls diet. Neither worked for me. I still have MS.

Have you healed yourself? If so please tell us how.

[ElliotB]

You may be right, but on the other hand people had MS long before the 'toxic' conditions you reference we in existence - no one really knows for sure at this point what the cause is.

"...That is why there can never be a cure"

Never is a long time, and I have learned over the years to never say never!

[1eye]

I agree: never say never (unless you are King Lear: then say it five times). I would like to posit that, not only is there no money in the cure, there is no cure in the money. Stop wasting it by giving it to drug companies, "MS research", and "MS neurologists". You'll feel much better if you do.