Finding cures is not even remotely a consideration by pharma

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Re: Pick Winable Battles.

Postby frodo » Wed Dec 09, 2009 2:22 pm

MarkW wrote:To declare my background - I am registered Pharmacist and worked with the pharma industry (as a Pharmaceutical Consultant) until MS prevented this.

Why wage a war on pharma ? What do patients with MS gain from it ?
The battle to engage in is much more simple - Step 1, How do pwMS get the Ultrasound/MRV without going to Poland. Step 2 How do pwMS find a Interventional (Neuro) Radiologist to perform angioplanty on restricted veins.

Do not expect the medical and pharmaceutical community to jump at this method. Please spend your efforts and energy in making progress for pwMS rather than battling pet hates.

Mark Walker - Oxford, England.


I agree. A pharma as any other firm has to make money, and is normal that they do not investigate something if there is no money involved. They have the right.

The ones that had no right at all for ignoring this OLD research are the MS societies around the world. From my point of view they are the ones that had the duty of investigate these non-standard publications, and they never did.

I think there was a thread explaining that Schelling had problems with them. I hope that someday they will have to apologize.
User avatar
frodo
Family Elder
 
Posts: 598
Joined: Wed Dec 02, 2009 4:00 pm

Advertisement

Postby Johnnymac » Wed Dec 09, 2009 3:19 pm

The only thing about pharma companies that really doesn't sit well with me is being publicly traded. When a company goes public their mission statements inherently change to reflect the fiscal responsibility to their shareholders. Once public, those firms have now only opened the door to conspiracy theories, but put themselves at the mercy of financial markets and can force decisions regarding the bottom line that private companies can more ethically tackle and still stay true to their core values.

There are great people working in the pharma industry that do wonderful things to help people. Unfortunately its always shady when you start mixing business with saving lives. There are muddy waters there that just breed mistrust and speculation....some of which may be justified, a lot of which isn't.
User avatar
Johnnymac
Family Elder
 
Posts: 213
Joined: Wed Oct 18, 2006 3:00 pm

Dr. Andrew Weil

Postby Moom9335 » Wed Dec 09, 2009 5:01 pm

Another voice you might want to read is Dr. Andrew Weil's newest book, Why Our Health Matters. In it he gives his opinion of big pharma including the following quote, "The influence that the pharmaceutical companies are having on every aspect of medicine...is so blatant now you'd have to be deaf, blind and dumb not to see it," said Journal of the American Medical Association editor Dr. Catherine DeAngelis.

So, be skeptical, be informed and don't doubt the reach the pharm industry has on doctor's opinions and reactions to ideas such as CCSVI, among others. 8O
User avatar
Moom9335
Family Member
 
Posts: 74
Joined: Sun Dec 06, 2009 4:00 pm
Location: Michigan

Postby bohemianbill » Wed Dec 09, 2009 5:02 pm

Scut you have a way of making my argument, Brooksley was the lone voice in the forest & even though she had the mandate her findings were refereed to as misgiving, potentially detrimental to the American way of life. Congress as usual relied on the advice of a media hyped, wall street free market disciple. Greenspan 10 years later (after all hell broke loose) & in his retirement admitted to Congress "I made a mistake"

The derivatives at GS and JPM are both very scary BUT the avg person does not know about that,so much in our economy relies on keeping the public duped and their eyes on other arenas-like paying their bills and foreclosures and jobs at the moment.

CCSVI is not on anyones radar screen unless you are directly affected by MS. So 99.9% of the world have there own battles to wage on many different fronts. My so called misguided rant against big pharma is a rant against the SYSTEM. Its the system that will impede CCSVI.

Its the profit at any cost wall street model that I fear. Money is Power.

I truly believe in my soul without us (the MS Community) demanding Total Transparency on all things CCSVI research, If we as the people directly affected are not able or willing to conduct our due diligence, to question as Brooksley Born did 10 years ago, how OUR money is spent, than the Power that Brooksley ran into 10 years ago will intrinsically (by being allowed to be itself ) will make CCSVI irrelevant. If we the MS Community are not willing to question, demand Total transparency on all things CCSVI,

than Sir who Will?

PS-i have returned to this post after realizing that there has been about a thousand pair of eyes that have viewed this thread. To me that means, there has been thousands of phone calls, emails, letters, conversations re: CCSVI. Societies, Politicians, neighbours, co workers, strangers are being educated to the possibilities that CCSVI means to the world of Multiple Sclerosis. This is how we will make CCSVI RELEVANT.




-keep the heat to the feet-

BB
User avatar
bohemianbill
Family Member
 
Posts: 81
Joined: Fri Nov 27, 2009 4:00 pm

Postby vendredi5h » Wed Dec 09, 2009 6:34 pm

Pretty interesting topic! Here is my opinion on the subject. I'll try to be short (finally, I didn't succeed!).

It wouldn't be acceptable for any company to try to find way to reduce their profits. There is no doubt in my mind that big pharma don't do anything to try to heal any health problem. And I don't expect them to do so. It makes no sense for a corporation to get rid of, or to reduce, the need for their products.

But I don't think either they are active to prevent such a discovery.

I always said that the scientific proof is the weapon of mass destruction of the big pharma. They want all potential therapies to be forced to pay 100 millions dollars before being accepted as valid. That is the best way to eliminate the competition (and potentialy keeping them in business) of non-drug solution.

Publicity and lobbying are very important too. Non-drug solution are not using these tools. They simply didn't get the money for this. That mean that doctors are hearing always about drugs, and drugs, and drugs...

I've got MS in '98. Two years later I found Ashton Embry's Best Bet Diet. I know without a doubt that this diet significantly slowed my MS progression. That guy try to fund a research since '98. More than ten years. If he's successfull, that will be such a small study that it will be only good to make others say: "Oh interesting results! I'm looking forward if it will be reproduce and to see a real big study afterward." If in 10 years Dr Embry didn't succeed in collecting 1 million $, we can assume at least 1000 years will be needed for the big 100 million study!

My point is that "scientific proof" are big pharma's WMD. I personnaly don't need that proof to accept or not a potential solution. There is a guy in Italy that have found something: CCSVI. He's got no financial interest in this solution. Some other guys are getting the same results. Now, I'm folowing this solution and I want to see if in two years the progression seems to stop once the veins are unblocked. I'm not looking for "scientific proof", only results. If the results are positive, I'll pay what it takes to get it done.

I realise that it is really selfish! If nobody fight to get CCSVI accepted, most of PwMS won't even hear about it. And doctors will keep hearing about drugs, and drugs, and drugs... But all the system is so perverse in my opinion! Not just medicaly, but anything where money is implicated (including ScutFarkus' Warning link). I'm definitely undeceived. But not frustrated. I go with the flow...

Yannick
User avatar
vendredi5h
Family Member
 
Posts: 38
Joined: Sat Oct 17, 2009 3:00 pm
Location: Quebec, Canada

Postby jay123 » Wed Dec 09, 2009 6:59 pm

The only thing I wonder about is the amount of money the drug companies throw at the neuro's, and is that effecting their thoughts as to the validity of CCSVI.
A good example of this is the 'supposed' (because we don't know it is true) email that the Stanford MS clinic doctor sent to his staff about how he was able to win the battle with Dr. Dake and shut him down. In it he referred to all the MS clinic staff being in Boston last weekend, and hoped they had a good trip home. Now I know I might have missed finding it, but I did all the searching I could for anything about an MS conference in Boston and couldn't find anything. Could this have been a drug company sponsored meeting? Maybe someone else can find what conference they were all at.

Or did the or a drug company decide they needed to have a talk with them?
User avatar
jay123
Family Elder
 
Posts: 373
Joined: Mon Sep 21, 2009 3:00 pm

Postby bohemianbill » Wed Dec 09, 2009 7:06 pm

Bravo Jay!

Legitimate question, legitimate concern and this is exactly the type of due diligence we need to do on this board.
I missed this email could you post the link please.

I will start digging in the am. Who else will join us in making every thing CCSVI --Totaly Transparent--

-keep the heat to the feet-

BB
User avatar
bohemianbill
Family Member
 
Posts: 81
Joined: Fri Nov 27, 2009 4:00 pm

Re: Pick Winable Battles.

Postby CureIous » Wed Dec 09, 2009 9:06 pm

MarkW wrote:To declare my background - I am registered Pharmacist and worked with the pharma industry (as a Pharmaceutical Consultant) until MS prevented this.
Why wage a war on pharma ? What do patients with MS gain from it ?
The battle to engage in is much more simple - Step 1, How do pwMS get the Ultrasound/MRV without going to Poland. Step 2 How do pwMS find a Interventional (Neuro) Radiologist to perform angioplanty on restricted veins.
Do not expect the medical and pharmaceutical community to jump at this method. Please spend your efforts and energy in making progress for pwMS rather than battling pet hates.
Mark Walker - Oxford, England.


Yes, I realized early on that no "bad guy" is needed here. Let the pharmies do what they want, they'll move on because the business model isn't creating the proper % to keep the shareholders happy. While it's easy to have this reaction at first like I did, the fact is it IS a HUGE waste of precious energy and resources to tilt at the proverbial windmill. Of course I see a lot of shape-shifting going on right now, and it aint all from big med either. I talk to people all the time that are clueless where to start in all this. THEY need help right now.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
User avatar
CureIous
Family Elder
 
Posts: 1189
Joined: Tue Jul 14, 2009 3:00 pm
Location: Riverside, CA

Postby CNClear » Mon Dec 14, 2009 9:49 pm

Jay123...where can we find more about the 'supposed email' ?

Thanks,
Lisa
User avatar
CNClear
Family Member
 
Posts: 96
Joined: Fri Aug 28, 2009 3:00 pm
Location: Near Atlanta, GA

Postby nicko » Mon Dec 14, 2009 11:10 pm

In my opinion, its pretty obvious that big "Pharma" is out just to make money and not actually to help people.

First, When was the last cure for anything?? I believe polio in the 1950's if i'm not mistaken. Now with all our technology its just down right pathetic that nothing has been cured since. Its obvious to me that cures are not profitable. Life long treatments are where the money is.

The sad thing is... how many dieseases and peoples lifes could be turned around if this wasn't the case??? How many cures have been stumbled across but have been kept quiet because they are not profitable??.

Theres no point to fight the big "pharma" , i'm just hoping that the human condition of greed will someday evolve into compassion.
User avatar
nicko
Family Member
 
Posts: 99
Joined: Fri Jul 08, 2005 3:00 pm

Postby Johnson » Mon Dec 14, 2009 11:59 pm

To be fair to "Big Pharma", I think that they are/were looking for something to make our lives truly better, else, no one would take drugs that have no good effect. Now, I don't even use aspirin, so I have no investment in chemical drugs.

The thing is, there was/is no known cause for the dis-ease, so trying to cure it with drugs is hopeless from the beginning. They never would have found a drug to "cure" it, because they were over-looking what has been over-looked for so long. Can't really blame the neurologists for not finding it either. It is understandable how MS ended up being the eminent domain of neurologists, because all of the symptoms seem to originate in the brain. That has changed now. We do think that the major part of the puzzle has been solved. There will still be room for the pharmcorps to make money with chelation drugs, and who knows what else. They may even start working on chemical dilators for stenoses.

In the meantime, we need to get the treatment for jugular reflux into the mainstream. (and I am making some small headway in Vancouver. It's premature to comment beyond that)
My name is not really Johnson. MSed up since 1993
User avatar
Johnson
Family Elder
 
Posts: 979
Joined: Tue Dec 01, 2009 4:00 pm
Location: Ucluluet, BC

Postby sbr487 » Tue Dec 15, 2009 4:33 am

I recently read that lot of hot research is going on in the direction of gene/dna therapy. Or atleast, the cause of many diseases that afflict people today. For example, it is said that cancer has its origins in the gene mutation (due to environmental, habits etc.). Now imagine how much opposition these research will face from pharma companies who must be making billions and billions out of others suffering.

I think what we need today is really honest policy makers and very transparent watchdog agencies. Unfortunately, it is people who make these agencies good or bad and they will always be attracted to big money the pharma companies have to offer.

In this aspect, I really think some of the watchdog agencies in Europe are really doing a very good job. Remember that Intel and Microsoft had got penalized due to their malpractice. Looks like we still have some good people left ...

Regards,
User avatar
sbr487
Family Elder
 
Posts: 860
Joined: Tue Nov 24, 2009 4:00 pm
Location: India

Previous

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users