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Cephalon Gives $$$$ To Stanford. Looks A Bit Fishy To Me


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#1 doinmdirndest

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Posted 01 July 2013 - 01:44 AM

cephalon, the maker of the 'vigils', gives money to Stanford.   I find this a bit suspicious as decreasing rx'es written for the traditional 'stimmies' will increase sales of the 'vigils'.  I encountered a lot of hostility toward my Adderall regime at Stanford during my visits there in an evaluation in '10, also from the office of the director, dr mignot, later after I emailed a request for Stanford to have different md attending me to dr mignot.

 

in being fair I must make it clear that dr mignot's email address is not where my reply/replies to the inquiry came from.  nevertheless the email replied to was sent to dr mignot.  repeated attempts sent to dr mignot by me asking his confirmation or his disavowal, whichever is applicable, of these replies have been/are met w/silence.

 

a recent ('12) paper by dr mignot, the director there, A PRACTICAL GUIDE TO THE TREATMENT OF NARCOLEPSY AND OTHER HYPERSOMNIA SYNDROMES takes a dim view of the amphetamines as a tx option for eds.   a previous paper by dr mignot  PHARMACOLOGICAL ASPECTS OF HUMAN AND CANINE NARCOLEPSY does not.  in fact it acknowledges high doses of same as indicated/neccesary  in some patients on pg 37.  very high doses.

 

  could this older (96) paper reflect a medical position prior to cephalon $$$ incentive, inappropriately influenced by same to some degree at least?

 

DISCLAIMER: I an aware dr mignot has done pwn a lot of good, and he is a great md.  only his position on amphetamines apprears to me questionable.



#2 Hank

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Posted 01 July 2013 - 09:06 AM

Just as an FYI, donations are made in the form of "unrestricted grants". There cannot even be the perception of strings attached. It is a major source of research funding. This is a highly regulated process and there are severe penalties for improper activities.

You have raised a question about "inappropriate influence" without offering any supporting evidence.

There is a very restrictive process in place that would make that inappropriate influence very hard to accomplish.

An institution like Stamford's greatest asset is its integrity and reputation. Trading an opinion for money would require a large internal conspiracy of numerous academics willing to sell their professional reputations (and futures) for some research money. Unlikely. Stamford has far more to lose than to gain by engaging in such inappropriate actions. An institution caught doing that would essentially loose all credibility in future research. Their reputations would be destroyed. Their funding would dry up. They would essentially be shooting themselves in the foot.

I just did not want to leave a false accusation unchecked.

#3 DeathRabbit

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Posted 01 July 2013 - 12:14 PM

Yeah, I mean think about it DMD. Since increased awareness of Narcolepsy means more diagnoses and more treated patients, it makes sense for Cephalon to donate. They don't need a quid pro quo arrangement to for that to be a smart business move.  Just like if you were a company that made solar cells and you decided to fund alternative energy research. It just makes sense. Plus, Provigil was just coming into it's own when that first paper was written. It wasn't even available in the US until 1998. So it makes sense that Mignot's opinion would change once the drug had more widespread use, more empirical data, etc. That's not to say there isn't any grab ass that goes on with this kind of stuff. But that's hardly proof enough to make such allegations, man.



#4 doinmdirndest

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Posted 02 July 2013 - 01:34 AM

ok. my bad.  nothing inculpatory in an opinion preferring 'vigils'.

 

but for me and my wife when we got a reply from the office of the director in '10 declaring a well tolerated wakefulness promoting Adderall regimen began years prior to the fact bad medicine  (verbatim: "we would not advocate for using stimulants in the amounts you are prescribed") we were shocked.  we remain shocked to this day.

 

I then had no clue how medicine/medical institutions/md's operate, save my prescriber as of then's behavior as example.  no other dr exists in my past, since pediatricians in my grade school years.

 

since then I have made an effot to learn, I come away a bit more informed but have yet to understand why after remitting to same office the 96 paper and sounding that office on the part acknowledging high doses as needed in some case I was asked not to email anything further w/o anything to explain how it was/is that my 300mg/d Adderall regimen was not ok for anyone-obviously the meaning of the reply I got above, but a 250mg/d desoxyn regimen (= 500 mg/d Adderall. this is one of several specific meds w mg/d amt. used as examples in the article) was ok in some cases.

 

been after what is/was behind this punk move ever since.  looked at something at the end of the '12 article, legal disclaimer evidently required disclosing cephalon money being paid to Stanford.  'aha!' I thought. 

 

dr mignot may never have seen our email.  I don't know and probably never will.



#5 DeathRabbit

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Posted 04 July 2013 - 10:47 AM

Well thats because that treatment isn't safe. It may work for people who have a rare amphetamine tolerance such as yourself, but many people would be harmed or, possibly in some cases, just flat out killed by that kind of dosage. Look at it from their point of view. They're not just trying to protect themselves; they're trying to keep people from serious harm. They have to tailor their approach to what will be the most appropriate for the majority of the patients. In addition, offering doses like that would most likely bring a whole lot of drug seekers out of the woodwork. And of course, finally, there's just the fact that stimulants are just kind of inherently bad for the brain and highly addictive so that's why sleep medicine is trying to move away from them. It's not that there's anything evil about stimulants or that there is some big conspiracy push other drugs instead. It's just logical, pure and simple. I am sorry that it causes you grief, but there's really no way that making extremely high doses of stimulants into SOP would not end in serious problems. Some people, of course, stand to make a lot of money off of that. But the makers of proprietary stimulants such as Vyvanse do not. So if it was truly all about corporate greed, you would think there would at least be some sort of parity between the amount of research indicating stimulants and the amount indicating nootropics.

#6 Ferret

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Posted 04 July 2013 - 12:34 PM

FYI, the Psychiatrist from whom we rent our house is also Narcoleptic. He is now 78. I've had many discussions with him about meds and why I hadn't taken them for 25 years. He told me the MAXIMUM that is now prescribed for Ritalin is a QUARTER of what I was prescribed in 1986. No wonder I was screwed up.

I think it's called live and learn from the patients' experiences...and, no, I don't mind having been a guinea pig if it helped the rest of you. Of course, those are my thoughts after the fact...I was not amused at the time.

Patient studies?...we are the study!

The limits are for your protection not theirs.



#7 DeathRabbit

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Posted 04 July 2013 - 01:46 PM

Exactly. The field of medicine is constantly advancing. If it didn't we'd still use leeches to cure poison and blame intangible illness on God's judgment.

#8 doinmdirndest

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Posted 04 July 2013 - 02:04 PM

all I know is the next guy to show up at Stanford with indications like mine who has a fragile wife that gets despondent when his meds run out isn't going to have a similar experience. these forums are where i'm 'taking it to the streets', man.

and dig this-the nih narcolepsy info page tells us narcoleptics cannot expect to hold jobs like I have. I am a construction laborer, been w/same firm 9+ years. the work is sometimes as grueling as any but I can do it w/my meds. how many here would prefer not being tired that never get the chance to explore my tx options w their md's? more than 1 or 2 I think.

I wish I had a way to show all of you a medical paper from 1968. there is no online access to it and when my wife and I spent 7 hours entering the whole thing into this forum they removed it because it's copyrighted. it's by dr. Robert yoss, a pioneer in narcolepsy treatment and research. it mentions common sense things for determining mg/d amounts when prescribing stimulants like patient's body weight and type of work the entire medical community-from all the articles I can find-has apparently forgotten today.

if anyone here wants to check out 'ON THE TREATMENT OF NARCOLEPSY' use contact info from my profile page to send a fax# and we'll get it off to you.

#9 Hank

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Posted 04 July 2013 - 03:20 PM

A lot has changed since 1968. Some things were considered safe then- like lawn darts and smoking during pregnancy and driving without a seat belt.

I am sorry for your anguish, but high doses of amphetamines (like your 300 mg/day) can cause "sudden death"- the cardiac equivalent of a blow out. Statistically, more people would die than find benefit.

For any medical treatment, the benefits need to outweigh the risks. Objectively, the risks are too significant. There are safer options. I am not, however, saying that you do not benefit- I take you at your word.

I never got a lawn dart through my head, but I would never give them to my own kids. The risk is too great and there are safer games to play.

Anytime I beat a drum for a parade of one, it can be frustrating. I wish you the best with your chosen treatment approach. I had heart palpitations on Adderall 30 mg, so I will not be joinging your parade. Even six months since discontinuing Xyrem, I make it through the day with just morning coffee and a nap on weekends. Whatever works- Cheers.

#10 doinmdirndest

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Posted 04 July 2013 - 05:08 PM

actually it could be a parade of 4. 3 are to be found in 3 of the other narcolepsy forums w/ regimens on par w/my own. I have yet to convince one we should look out for ourselves. 1 attempt thus far.

an indeterminate number exsist who would benefit.

H.- are you SURE more would be harmed than would benefit?

cite the articles/source if so.

DR/Ferret: You guys had a bad reaction to 'stimmies' but what if research figured out why and found a way to prevent this in a human? if you aren't wakeful enough now w/o them like H., likely you could be then.

It might could in me; they are slow to notice if the many institutions I've contacted ever will.

research walked away from traditional stimulants years, maybe decades hence. much is unknown about traditional stimulants. probably never to be discovered.



incidentally, a lot of things from 1968 are decidedly superior to what we have now.

it's important for medical research to bring us the best of both worlds.

and if you have my indications today, this is not there for you. they don't even consider body weight/type of work like they did then these days when determining the correct mg/d amount when starting stimulants, as they did then.

my type of work(I sure don't need no 24 hour fitness club)likely has quite a lot to do with my ability to tolerate high dose stimulants. I often work as hard as the concrete finishers. H.- no one on a co ncrete finishing crew will get 'sudden death' from any amount of Adderall, any pwn among them w/the indications ought to have this option.

unfortunately, any/all fine candidates among pwn for concrete finisher w/high dose Adderall needs are unlikely ever to see the first workday as a laborer as they won't have the same dumb luck I did in finding a doctor who will treat their eds the same way as my first doctor treated mine. (unless, of course, their narcolepsy has yet to develop.)

their treatment will leave them unable to so much as key in a contribution to an n forum the size of this one to b. about it, much less keep up on a finishing crew.

for them, 60 mg/d Adderall-the recommended maximum-might just as well be in sugar pills (if taken as directed).


no worries though man I can dig where you guys are coming from. I am only bringing the truth as best I can find it.

god bless America/happy 4th of july!

#11 doinmdirndest

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Posted 06 July 2013 - 04:49 AM

A lot has changed since 1968. Some things were considered safe then- like lawn darts and smoking during pregnancy and driving without a seat belt.
how is considering patient weight and type of work in when determining the correct dose at which to begin stimulants comparable? these factors in the correct treatment of eds are primarily what I am attemting to assert. and i'm not in anguish-my eds is treated. i speak here for those whose eds is today untreated who could one day benefit from higher doses, who might begin to pursue them with a new awareness of this possibility.
I am sorry for your anguish, but high doses of amphetamines can cause "sudden death"- the cardiac equivalent of a blow out. Statistically, more people would die than find benefit.

For any medical treatment, the benefits need to outweigh the risks. Objectively, the risks are too significant. There are safer options. I am not, however, saying that you do not benefit- I take you at your word.

I never got a lawn dart through my head, but I would never give them to my own kids. The risk is too great and there are safer games to play.

Anytime I beat a drum for a parade of one, it can be frustrating. I wish you the best with your chosen treatment approach. I had heart palpitations on Adderall 30 mg, so I will not be joinging your parade. Even six months since discontinuing Xyrem, I make it through the day with just morning coffee and a nap on weekends. Whatever works- Cheers.



#12 doinmdirndest

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Posted 06 July 2013 - 04:55 AM

note to everyone: I tried and failed to offer a rebuttal to hank's reply above.  I will call nn on the phone to learn how, then format it correctly tommorrow