This Is MS Multiple Sclerosis Community: Knowledge & Support

Has anybody tried to get in contact with the "No free lunch" initiative? These doctors claim to be independence from the pharmaceutical companies:

http://www.nofreelunch.org/aboutus.htm

http://www.nofreelunch-uk.org/

They might be a little bit more open to the CCSVI approach...

I understand why people think that doctors might be in the pocket of pharma people. But I have to say this, being ex-pharma that is simply not true!

Most doctors make independent decisions based on their knowledge base and experience.
Most neuros don't have experience with the vascular system-i think- and so are not the best authority in in the matter. Yet, daily, they are having patients ask them questions about CCSVI and they are giving answers based on their knowledge.
Some doctors will be anti the whole thing-we have met them-and some will have a wait and see approach. That the pharma drugs are not fabulous is somehting these guys know-but its all they have..so I am sure they would want to help their patients. Maybe in this case, they can help by being critical of the data that comes out.

Relax, if this thing has potential then it will be measured by the Buffalo study which in turn will generate other research which will will eventually lead CCSVI to become a part of normal medical practice.

In the meanwhile, people can decide for themselves what they want to do.

A doctor have affiliations with the 'evil' industry makes no real difference to thier opinions..at least not much difference. They make their own decisions!!

Dear Sumsum,

Thanks for this very useful info. I'll certainly get in touch with these docs.

There are a few recent studies on CCSVI that do not seem balanced at all (e.g. the Dutch & German ones). I do not think that pharma money played a role there. But my view is that the more people we can involve in CCSVI research the better, if it is free of pharma lunch, perfect.

@Daisy: Unfortunately, I don't think that doctors always make up an independent choice or decision when treating patients. They make up their "own" choice based on information and this information is, unfortunately, sometimes biased.

Just a very concrete example: a year ago I was told by my then GP that I had a thyroid hypofunction, although I didn't have any symptoms. I took the medication, an other doctor even raised the dose and then my first MS symptomes came up - a coincidence, the neurologists I saw told me (however in the CCSVI paradigm there might be an link between these two phenomena). Now I saw a "No free lunch doctor" who did another blood test with me.

Result: I don't have a thyroid hypofunction!

He told me that thyroid hormones are the most often prescribed medications for young women in Germany, because, doctors consider, that you can always improve something in this regard, it does no real harm and it makes you a regular customer (blood test every 3-6 months etc.)...

I wonder if there is any connection between the location of the thyroid gland and the action of Campath, in light of CCSVI. The most common side effect seems to be autoimmune thyroid problems. Otherwise it seems pretty successful in 'RRMS'.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Do you think that it's possible the doctors reacted based on their different experiences of the thyroid functions in patients?

In articles about ccsvi, the media makes note of MSers decrying their neuros as being in the pocket of an enormous pharmaceutical cabal.

They say it the way they do to ridicule our beliefs. But I think it is ridiculous to assume that the pharmaceutical companies outreach to doctors, 'hot babe' pharma sales reps, and financial support of doctor's research on an enormous scale would NOT buy some influence. OF COURSE they are influenced. Why else would the pharma companies be bothering?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

Fixed!
(EDIT: I mean that it's not totally unjustified and not obviously motivated by ulterior motives. People do say that kind of stuff.)

But on the other hand, we're all just bought and sold to some degree, so that financial interests and narrowly defined greed factor into almost everything doesn't surprise me in the least.
It is an interesting idea. Who hasn't been prescribed something by a doctor whose office wasn't just a giant advertisement for that drug?
But I don't think drug companies have an exclusive hold on profiting off of sick people. The whole medical system seems to do much the same, as do the alternative therapists, etc.

Cece,

I was a med rep...and I'm also female. Hot rep? not really:-)
Doctors here in the UK are told what they can and can't prescribe by their local primary care trusts. So no matter how 'hot' a rep their influence is moot as far as prescribing goes.
What med reps are good at is using medical info to pass on a medical message that the company wants to pass on their customer base. In this case customers are doctors, so we can assume a certain amount of intelligence..right?
The point I am making is that the influence is limited, its not all encompassing. Companies are bothering with it because it acclerates sales..if the product is GOOD. If it's rubbish then the rep and doctor know it. Sympathy sales are not that common this side of the pond-I think your from the states?
In the case of MS, where you have doctors who are already sceptical/hostile to CCSVI, how much work do you think a rep does to re-affirm these ideas? I can tell you now the answer is not much if its even brought up in discussions.

everything I know about 'hot babe pharma sales reps' I learned from watching Scrubs....

Thanks for the informed viewpoint.

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I am not one to jump on the "all neuros are bad" bandwagon. I think there are plenty of good doctors wanting the best for patients with MS. And pharma has nothing to gain and a lot to lose when it comes to CCSVI, but I don't blame them for every glitch in CCSVI research.
I wanted to share a conversation I had with a friend recently.
He is a rep working with neuros in my town and here is what he has to say. He has been told by most of the neuros treating MS they could get (insert # of patients) on his drug IF they received special favors. These favors amount to trips and dinners among other things. They are also getting paid very nicely to give "MS seminars" (with a push toward MS drugs) by the companies making MS drugs. And a few are making a lot by recruiting MS patients for studies.
Now... some docs will legitimately need to prescribe these meds to a few, and some patients will get good info at a seminar, but the underlying money connection makes the waters muddy.
I also think the connection will be proven, (CCSVI and MS), and they will be unable to deny it eventually. The pharma's pockets are deep and losing profits on MS drugs is a big deal to them. We need to watch carefully and make sure the published research is accurate and the doctors working on this are unbiased.
Here are a few pargraphs from the nofreelunch website:

We are health care providers who believe that pharmaceutical promotion should not guide clinical practice. Our mission is to encourage health care providers to practice medicine on the basis of scientific evidence rather than on the basis of pharmaceutical promotion. We discourage the acceptance of all gifts from industry by health care providers, trainees, and students. Our goal is improved patient care.

We aim to achieve our goal by informing health care providers as well as the general public about pharmaceutical
industry efforts to promote their products and influence prescribing; provide evidence that promotion does in
fact influence health care provider behavior, often in ways that run counter to good patient care; and provide
products that can replace pharmaceutical company paraphernalia and spread our message.

We believe that there is ample evidence in the literature--contrary to the beliefs of most heath care providers--
that drug companies, by means of samples, gifts, and food, exert significant influence on provider behavior.
There is also ample evidence in the literature that promotional materials and presentations are often biased
and non-informative. We believe that health care professionals, precisely because they are professionals ,should
not allow themselves to be bought by the pharmaceutical industry: It is time to Just say no to drug reps and
their pens, pads, calendars, coffee mugs, and of course, lunch.

Great topic and discussion!

_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.

The industry has got itself in a bit of a sticky position by traditionally treating doctors like they were demi-gods and giving them all they could.

It really is quite frowned upon in the UK and the rules don't make it so easy for companies to provide goodies for the docs anymore.

There are always people out there who will try and get what they want and won't care so much for how it is done and at what cost. The only place I have heard of doctors who do this are in third world countries where enough loopholes exist in the laws to let those so inclined take advantage of their positions.

The United States is slightly odd as it allows the industry to advertise directly to patients, to hear that doctors look for bribes to take part in trials or use drugs is not that impossible to imagine.

I do wonder what the colleagues of such doctors think of them? In my experience doctors who are seen to be over friendly to the pharma industry are not always that well thought of.

Gosh, makes me wonder what it would be like to be rep out your end

I don't care the "free lunches"; I don't care the "gifts" or whatever other 'incentives' that might occurs; it happen in any "chain of supplies" that I know...
What I 'do care' is - that it does the job.... And obviously it does not right now...

The most interesting thing to me is the U.K. study on the efficacy of the CRABS. The medical system there is very different than the U.S., and with lessened ability to influence doctors and research, we learn something new.

That said, as a financier by trade, I tend to follow the money by default.

Speaking to the U.S. to start, the industry to treat MS is enormous. All you need to do is look at the balance sheets for the big pharma companies- particularly those that specialize in biopharmaceutical treatments like CRABS- and you can see that there is a lot of money associated with a very small population of patients.

Billions to treat roughly 500K patients in the U.S.

I don't know of anyone that has not had to supplement their CRABS regimen at some point with yet another pharmaceutical solution. Solu-medrol, prednisone, antibiotics, etc. etc. Drug not working? Take more drugs. Take a different drug. Just take a drug.

In fairness, CRABS are defined as "disease modifying drugs". Speaking solely from personal experience, however, I can't say that the drugs are working. I didn't even feel better after my multiple solu-medrol infusions for day in a row- and you can't get more steroids in you than those!

There is a lot to be made in treating the hopeless. There is a lot to lose when you have a solution that gives hope. That is where I believe the friction lies in the industry.

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Three veins angioplastied.  One renewed life.  

Man, one time this pharma rep came and gave me a neato calender and a coffee mug, then I went out and tried to hurt sick people at their behest!!!
Just kidding, but what I wouldn't do for a free lunch!!!