This Is MS Multiple Sclerosis Knowledge & Support Community

Everyone knows that I'm famous for asking the hard questions and pushing for the rights of MSers in many areas, and everyone is aware of the research I found and have submitted to many researchers for their comments on it.

Here is the "fight" I have been up against, and which I have decided to let them "win". But believe me, I didn't exit the arena without leaving them with one thought: That I only hoped they are proud of "whatever" it is they think they have "won".

For a year now, I have researched and found a drug agent that HAS been determined by the NMSS and a couple of other well-known MS researchers to be worthy of further laboratory and/or clinical investigation. The problem is, these same people who support this immediately want me "out" of the picture. Totally. They try every maneuver in the book, political, egotistical, etc. that they can think of to remove me from the picture. Why?

Number 1: I'm in law. The medical field is afraid of "lawyers" in any way, shape or form. They know right from the start that I will not condone shoddy research or crappily designed clinical trials, etc. I want things kept "honest", to say the least.

Number 2: I've done my homework. I catch people immediately in their political scientific "lies", shall we call it, and pull the rug out from under them. So, am I saying I am as smart as them regarding medical issues? No, but I AM smart enough to be able to tell if THEY are smart enough or not. They don't like that, nor do they like being caught or questioned very much. If I'm involved, they are going to have to continue to answer some very tough questions. That goes against the grains of MANY medical "egos".

Number 3: I'm affiliated with the AFL-CIO. Which right now is highly involved in many adversarial positions with the medical industry in many areas. Again, related to keeping them "honest". Need I say more? Someone like ME stay involved...........not if THEY can help it!

Number 4: I can't be manipulated or "bought". I'm not in this for the "money". MY first and only concern is altruistic and they know it. It's for the potential benefit of MSers, not the pharmas or anyone else in the medical field. It's for MSers. That's it! Again, having me on board when I can't be manipulated and who has connections I can call upon for assistance, should I need it, makes a lot of people real nervous.

So, what is actually happening? I'm being pushed around. They are playing hard ball with me.

But given the above, and the fact that they want me pushed out of involvement and want me as far away from knowledge of anything as possible, just what does THAT tell you about what probably is going on in the world of MS research?

I know this isn't a popular position with most, but the ONLY people (organization) who HAVE remained by my side and supported me has been the NMSS.

So, bottom line here? They all know and some have even admitted, that my research is very valid and well worth investigating. BUT..........it has to be without ME being in the picture. I have refused to let them push me out, and it has gotten a little ugly. Who will be there to look out for the best interests of MSers? I'm not stupid. If I don't remain involved in the research all the way through, well there is no telling what will go on. I do this for a living and have worked behind the scenes in the medical industry. Again, I let them know I'm not that stupid.

So...............I finally told them they win. I quit pushing for the rights of MSers, etc., and I withdraw my request along WITH my research!!! BUT, if ONE of them (including Vanderbilt) moves ahead now after having pushed me around and "out" and behaved the way they have, they will hear a media display like they have never heard before!

I have left my research in the hands of the NMSS. They have promised me that they will be presenting it to Dr. John Richert for review when he comes on board.

So, the MS research field has "won" their stupid fight to keep their little world contained within their questionable practices arena. They win..........I'm on the outside. But I will always be looking in. Especially after receiving the disrespectful, hateful, and childish behavior I have received from them.

I just can't go it alone anymore. They win. At the expense of MS patients. Again, I hope they are very proud of themselves and can hold their heads up high.

I leave my trust with the NMSS.

Thanks everyone for all of your support. Let's hope somebody can make a difference and puncture that inner sanctum of MS research and money-making schemes. I apologize that it couldn't be me. I just couldn't do it alone. They succeeded in breaking my spirit and initiative.

Deb

Deb,

You're not a quitter.

Two phrases come to mind:


If at first you don't succeed try, try again (Robert the Bruce).

It's not the winning that's important it's the taking part.


I've posted some questions to get you re-interested.

All the best

Bromley

Thanks, bromley!

Yeah, well, let me just say that we were talking just yesterday at work about "cement shoes" (which does apply very strongly to the world(s) we are involved in).

Remember the words "cartel" and "RICO" in the thread I posted regarding current lawsuits in the medical field (and that was just a very small sample and only pertained to one small area of medicine.)

Let's just say it takes some pretty fancy footwork to keep your feet out of cement shoes. "Hard ball" is a pretty tough game to play.

Deb

EDIT: Well, we'll see. "Maybe" I just need some time to re-group.

SECOND EDIT: RICO = Racketeer Influenced and Corrupt Organizations Act of 1970.

Racketeer is a nice word meaning = "A person who commits crimes such as extortion, loansharking, bribery, and obstruction of justice in furtherance of illegal business activities"

OddDuck,

Unionize MSers? How about a concerted effort towards gaining power? Does it break any laws to join forces for their own benefit?

So why don't MSers organize and buy stock in a drug company (even just one share) and then go to the annual meeting en mass and put some well thought-out questions to the CEO and board in the Q&A sessions? Don't make it confrontational about their drugs or research plans but just get them on record specifically with regards to MS research. Meanwhile pepper the press with requests to cover the meeting or at least get afterthoughts from some of the more persuasive MSers.

Also, isn't March supposed to be MS awareness month? Call all your local TV stations and get them to run both: stories on individual MSers coping with the disease to show the difficulties; and stories about the state of research, making sure the reporters know about the dissatisfaction that many MSers have with the status quo.

Another possibility is for MSers to get together and quietly buy up a majority ownership in a small drug manufacturing company. Then work to change the management or at least the management attitudes. Hire or contract with a group of drug discovery researchers (my ears are burning!) whose sole project is to find, develop, patent, and manufacture just one drug for chemotherapy and/or chemopreventation against MS. At that point, the sole purpose of the company is to manufacture and supply that drug at a low price to MSers, foregoing any profits. Then MSers would be loyal to that product until the other drug companies get wise and come up with something better.

It might not be so difficult as it sounds if the drug discovery researchers are given specific directions: not an immuno-based approach but something aimed at the neurodegeneration. We have mentioned several enzymes in this forum that would make good targets for the drug discovery process: metalloproteases, peptidyl arginine deiminase, and polyamine synthesis enzymes. One of them should pan out.

Okay, that's my blue sky'ing about your frustrations. But, to at least be somewhat practical, everyone should get involved in some way in March to increase the awareness. Call your local TV stations and ask a higher-up what programming or news reports they are planning, and make some additional suggestions. Go in person to the station. And if you have several local TV stations, play them against each other if possible to get more coverage.

Wesley

Wesley,

Did I not say in my post that "I can't do all that alone"? Have I not been trying for months to "mobilize" as you have suggested?

Ok................then also tell me this. You are talking about very ill people when you are talking about getting them to do all of the above. Do you suffer from MS, Wesley? Do you have ANY real idea what it's like? Do you? Do you know what it's like not to be able to stay awake for more than a few hours at a time? Do you know how it feels for it to take every single ounce of your strength just to raise your arms above your head, or how hard it is to even dress yourself in the morning? To walk, to go to the bathroom, to SEE without flashing lights and blind spots and double-vision? To try to get through the day struggling with the pain, the sensory shocks, the stabbing pains that hit you from out of the blue as if someone suddenly came up behind you and stuck a knife in your leg? And we haven't even gotten to the cognitive problems yet. Try sometime to read something simple and suddenly realize that you can't!!!

Then while all of the above is going on, try to continue working. TRY to continue to support your family while your life is going down the drain and you can't stop it! Try getting disability or social security. Try getting insurance. TRY IT!!!!!!!

Try scraping together enough pennies to buy food first, THEN talk to me about "organizing" MSers so they can buy stock, and rally, and march, and raise your children, and clean your house, and try to cook.

I'm going to tell you something, Wesley. I went to Miami in November, 2003 to march in the FTAA March. Try walking in a city enclosed by gates and swat teams, while your knee collapses and your hip gives out, and the pain is killing you. TRY IT!

Look at your post again. You are talking to sufferers of multiple sclerosis, Wesley. The very ones YOU claim you are wanting to help. First, you need to walk in their shoes, Wesley.

And if you have or do, then your post is all the more demeaning as to its suggestions.

Maybe you weren't meaning to sound sarcastic here, but I'm respectfully telling you that's exactly how you came across. And if you are against unions, that's neither here nor there. But I highly resent, on behalf of every person with MS, your "go, go, go" suggestions to people who can barely get up in the morning, and then can barely stay asleep at night.

The way TO join forces is to do what we can for and through large organizations ALREADY ORGANIZED for our benefit!

Become a REAL part of the MS world Wesley. Join us. We need all the "healthy" people we can get to HELP us do all of those very things and extremely strenuous physical and mental activities you so respectfully (and I use that term loosely) suggested.

And while you are doing that as a person with MS, TRY getting medical treatment from the very neurologists you need to see for treatment, who have suddenly REFUSED to treat you BECAUSE you are doing all of the things you have suggested, which interferes with and shakes up their content little world.

Walk a mile in my life and shoes, Wesley. Try it! IF you dare. THEN you talk to me (and us) about all the "things" we should "do".

EDIT: And by the way, WHO was it again who helped YOU get on the "inside" a bit with YOUR research???

And if you think for ONE second that I exaggerate even the tiniest bit about exactly WHO some of the people are and/or who they are "associated" with that we are "messing" with, then you need to think again.

(My apologies, folks, but this just rubbed me the wrong way.) I have been and still AM on the receiving side of the kind of social and professional and governmental "treatment" we all get. I don't give a rip WHAT anybody wants to say I have or don't have. Neurologically, it can't be differentiated. ALS, MS, CNS disease.........one and the same. Do I suffer? You bet!! And do I keep fighting the best I can? Yes, I do!

Again, I'm sorry...........but I guess I'll retire to bed now, and TRY to find SOME position that allows me to sleep for a few minutes without the pain from the pressure of just laying on my own body waking me back up!

(Man, I'm fuming!! THIS is what I want to see an MS representative go on the Larry King show and tell the world!! Let's tell it like it REALLY is! And the above is still only during the EARLY stages of MS!)

I'm going to bed now for sure! Good night, all.

SECOND EDIT: Oh, and by the way...............don't underestimate who all reads this website and our posts, Wesley. Have you ever "considered" just how much influence or communication actually gets to where you are wanting it to go with each and every post we put on this website? Trust me, it isn't just people with MS or their loved ones who read this particular website, Wesley. Don't underestimate the power of the internet itself. This website especially. You might be surprised who all visits this site.

OddDuck / Wesley,

It's time to kiss and make up.

There's some relevant points in both your postings:

- Deb set out the grim challenges faced by those with ms. I'm at an early stage with minimal symptoms but one cannot help but worry about the future. I'm getting sick and tired of overhearing friends say ''he doesn't seem to be coping very well'. Does anyone with this disease? Bladder problems is a serious disease / event, loss (even partial) of eyesight is a serious disease / event, losing mobility is a serious disease / event etc etc (throw in fatigue and depression as well just for good measure). But it's never just a one off with ms. MS can (but not always) affect pretty much everything, and it gets worse, and it's with you for life.

And what does our health profession do - nothing in my view? They will give you (or sell you) anti-depressions tablets, anti-biotics for bladder infections, drugs for spasticity, canes, walkers, braces, wheelchairs, electric buggies, stair-lifts, adapted cars, special glasses, eye patches etc. Quite an industry isn't it? And that's before we get to the drugs - very, very expensive CRABs and Tysabri. And more are in the pipeline at all the major drugs manufacturers - look on any of their sites. Harry Z and others have raised questions about the trials data for these drugs. What do we want at the end of the day? - not to be disabled / to be able to work / to see our kids grow up / to maybe have a half decent retirement. I don't think the drugs companies are interested in this at all. What do they want - to get you on a lifetime of expensive drugs that offer the 'possibility' of reducing the risk of disability etc. All the national societies claim they are seeking the cure - but they won't. The researchers they employ / fund are quite happy to contiune their projects which never actually come up with any indisputable facts but pose more questions and the need for more research. All they want is their PhDs or an academic post and they need to show that they have published lots of documents on PubMed or wherever. All the work on remyelination will be a waste of time and in five years time they will move on to some other area of interest. I must look like a pessimistic character, but I'd be happy if someone could prove me wrong.

Harping on about research - they've been doing it for 50-60 years. Now they have MRIs, super computers, tissue banks, lesion banks etc etc. They have undertaken autopsies of those who had ms. Why is so little known? Why don't any researchers exchange views / ideas on this site? Let's set a challenge for the ms research world this year - come up with one indisputable fact about this disease that isn't known now. And stop giving annual awards for scientists for their contribution to ms research - what contribution? How many people have avoided disability because of their efforts - I'd suggest none. But I'm happy to be proved wrong.

I'd be happy to hear responses from anyone on these issues - a counter-view. But I really believe we are being taken for a ride and too many bodies have got too great an interest in getting to the bottom of this vile disease and getting rid of it (and for other diseases). What would all the researchers do - they'd have to invent another disease (and call it a 21st century disease rather than a 20th century disease like ms). It's a business world out there and auto-immune diseases are the cash cows for the drugs companies. We keep being told that so called auto-immune diseases are on the increase but strangely so are the profits from drugs companies. My dad who's nearing 70 cannot recall any of his school friends or post school friends having asthma, me, ms, etc etc. But, of course, in his day they didn't have such a wonderful drugs industry or wonderful processed food manufacturers. They probably didn't have so many cars polluting the atmosphere when he was a school boy but that gets you into another area all together.


Wesley - you raised the issue of neuro-degeneration. This I think is the key and where all the research funding should be focused until it's solved. Stopping axonal loss will stop us getting disabled / fatigued etc. I'm not a scientist but I see MS as a housefire causing terrible damage to different rooms. The fire service come along and spray the fire with water (the immune system) which causes more damage. The medical profession is focussing on cutting off the water supply but is not focussing on the real problem - the fire. Why not? If they are tell me about it and how well they are doing.


Bromley

Bravo!!!, bromley!

And again, my intent last night was not to upset anyone, and I even thought about deleting the post, but no..........for some reason, I think it needed to be said - not necessarily so pointedly to Wesley (I'm really not angry personally at him at all) - but I think what I said needs to stay.

I did get a surprise email late last night from a physician (not a neurologist), who said the same thing as bromley. I had said I was tired of fighting the "establishment" and I was letting them win, and basically how I hoped they were proud of themselves (they know and see there IS a drug that should prove to do the very thing that bromley has asked for, and because they see it, too, now, and have even said so, they want to suppress that knowledge?) He encouraged me to "keep up the good fight". I'm shocked.

Yeah, I'm facing all of this because my research doesn't hold any promise, right? Yeah, right.

Deb

Dear all,

Still wearing my conspiracy theory hat:


One of the facts on most national society websites is that ms typically affects those of the extreme north eg US, Canada, northern Europe etc. and South eg Australia, New Zealand. It's not usual in the middle e.g Africa. As usual no ms researcher has worked out why - could it be the sun (vit D), diet, genetics (no answers as usual but plenty of opportunity for more research projects). Here's another theory - could it be that those in the middle e.g. African countries couldn't afford the expensive drugs. No point having it there as no profit to be made.

Strange that it is suggested that those of northern European ancestry have some sort of genetic susceptability, but African Americans also get MS?

Why do the main ms drugs manufacturers sponsor ms conferences and national societies (the later with 'unrestricted' grants)? What are we paying our taxes for if it is not to help those with disabilities / serious diseases. Why can't Government's impose a small tax say 1% on the super profits of these companies and reinvest in national societies / independent researchers?

How come scientists can 'induce' and ms like disease in a mouse or rat but cannot prevent it in a human?


Drugs companies at the end of the day need diseases. Why would they want to eliminate them? MS is a perfect disease for them as they can say that it is very complicated and every few years come up with another expensive drug that does (or appears to do) a bit better than the previous one (and is a bit more expensive).

Does anyone else share some of my sceptism?

Bromley

[Deb is raising her hand] I do, I do!

Bromley,

It's ridiculous to suspect that drug companies puposely withold the cure to certain diseases with the goal of extending profits.

First and foremost I choose to believe in the good side of human nature. As Dr. Guy pointed out in a recent post, scientists devote years of their lives to finding cures. If they figure "it" out, whether "it" be an actual cure or just a critical piece of the puzzle, do you think these researchers are going to remain quiet in the interest of the company making more money while they sit back and wonder how their life's work could have benefited humanity? And how do you suppose the big pharma companies keep them quiet? Do they pay them off with hush money, or do they have them knocked off in the research lab late at night? It's like something out of a John Grisholm novel!

But even if you do believe that's all possible, there is a safety in place that completely nullifies your suspicians. It's called capitalism. In order for your theory to be valid, there would have to be a conspiracy among ALL of the drug companies who research MS to hold back collectively on finding the cure. Do you think that the company who discovers the cure is going to keep it a secret for the benefit of that entire sector of the industry? Hell no. It's a race to the finish.

Well, I guess that there are plenty of us who see different, huh?

I refer you back to http://www.thisisms.com/modules.php?nam ... opic&t=899 But of course, that needs to actually be read and understood.

What is going on there "behind the scenes" (that some people who wear rose-colored glasses don't want to see or be made aware of, because it might burst their bubble of us living in the perfect world where no such thing could POSSIBLY be going on) must just be the product of a witch hunt by a bunch of crazed (but highly educated and positioned people, mind you) lunatics, right?

Yeah, right..........

You're lucky you don't live and work in my world. I wish I could be as naive. That bubble was burst for me a long time ago.

Sorry.

Deb

EDIT: By the way, maybe YOU know where Jimmy Hoffa is buried, huh? Oh yeah, and I bet Hitler (and his medical "experiments") was just a figment of someone's imagination. Hey, truly.......I do envy you your innocence. (That's a true compliment.)

DenverCo,

Thanks for your response - I used to have faith in human nature, now I'm not so sure. Recent reports have shown that some drug trial results (Vioxx) have been manipulated and this scandal seems to be growing every week. Who manipulated the data? Scientists / statisticians / company officials?

Scientists aren't all that great - nuclear bombs, biological weapons etc etc.

But I'm happy to be corrected - given the number of huge drugs companies in the world - give me an example of one cure????? Just one (in additon to smallpox some 230 years ago). All those auto-immune diseases and I cannot think of one where someone has been cured for good. Capitalism is about expanding your market and increasing your profit margin - can you really believe that a company would end a future source of revenue by finding a cheap and once for all cure?


Bromley

Are we saying they are withholding a "cure" exactly? No, that's not what we are saying. What we are saying is there is not much of an incentive to find a cure (if a cure is even possible). And it's more profitable for any corporation to drag something out.

And are there treatments that could work, and work cheaply? Yes. I found a very highly probable one.

That's what we are saying.

And I suppose I'm lying about being refused medical treatment? Well, let me go get you the most recent arguments going on at the AMA regarding not treating people in the legal field.

BUT, again, you have to actually "read" it.

OddDuck,

I stated that I choose to focus on the positive, but I am not naive. You agreed with Bromley that there may be a conspiracy to withold disease cures in order sustain profits. I'm asking a legitimate question...theoretically speaking, if Berlex (Betaseron) discovered The Cure, do you really think they would allow Biogen (Tysabri) to blow their asses out of the water in the best interest of the big pharma brotherhood? In my view you are naive if you don't think that cash is king.