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Any Video/recording Of Fda Meeting Available?


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#1 doinmdirndest

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Posted 25 September 2013 - 01:15 AM

do any of you guys know if the patient focused fda meeting they had today was transcribed in any way so we can learn what was discussed? youtube video maybe?

#2 sk8aplexy

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Posted 25 September 2013 - 10:43 AM

Not sure about video.

It was pretty interesting, and there were many angles of concerns given.

To the extent of their listening, I do not know.

 

Here's a link they provided, to some page:

http://www.fda.gov/f...e/ucm359018.htm



#3 DeathRabbit

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Posted 25 September 2013 - 02:39 PM

Do you guys think anything good will come out of this or is this going to be a another government boondoggle?



#4 sk8aplexy

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Posted 25 September 2013 - 07:50 PM

I definitely, 'do not' have any expectations. 

Just thought I'd pay attention to it, and had nothing better to do with myself than attend it online. 

There's often a sort of echo'ing or a common group, involved in any of these mainstream/large sort of events, from what I've noted.

Publicity and money, obviously plays into a lot of that; and hopefully not entirely, and/or simply, for such...

But, I don't 'play' myself in such regards.



#5 doinmdirndest

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Posted 26 September 2013 - 05:09 AM

well, from where I sit the only chances with any realistic probability whatsoever of success are 'longshots'. for 3 + years I've been active in forums, been 'rattling cages' w/nih, big pharma firms, reasearchers, etc. in an attempt to dissuade anybody I can from the idea that high dose stimulants to treat eds cannot produce long-term benefits.

I find it absolutely certain this is dead wrong. it's a lead pipe cinch; provided one has had occasion to observe the benefits of such a regimen as are received by the guy I watch when I shave. evidently dopamine reuptake is re-routed by the human brain in this individual. hypersomnia/it's impact do not appear a qualification for a disability claim, w/effects of 'stimmies' amounting to powerful incentive for bosses to keep me on board. i'm still working construction, have been consistently since long before I found the internet ('02)

two words: they (traditional 'stimmies') work.

I gather you two guys would tend to disagree; d.r.'s accounts of negative effects from amphetamine rx portray an exceptionally bad experience w/them. had I similar experiences I too would likely have a different opinion regarding amphetamine isomers as a treatment option.

but the opportunity for me to make progress toward my goals w/fda meeting is unique; presumably, the officials listening are not doctors, yet are empowered to rewrite medical law.

doctors, exepting only the intrepid 2 md's-one began my 300mg/d Adderall regimen, the other continues it, have proven impervious to any reasoning I can muster, from vagueries based on my hypotheses, to more recent far better rounded 'making the case' presentations sent by me to both physicians and gov't officials as of late. these cite articles, as do articles from medicine. I did a decent job.

w/the doctors it is from all I have to go on a futile pursuit.

well, i'm hip to how the gov't is, man. had no expectations when I contributed written perspectives (2) explaining why high dose stimulants are an under-used treatment option. felt it was my duty.

so sk8aplexy....let's have us a wager. my 100$ bill says the fda meeting was as sans any read contribution touting high dose stimulants' benefits/recommending guidelines for their max. doses be raised.

and i'm betting against your 1$ bill. done? excellent! so, you were listening-start to finish? if so, how'd it go for my stuff? was it actually read or mentioned?

I know I didn't win a dollar. (hope my off-the-wall inquiry doesn't annoy, apologies if so. can't help it. somehow i'm into 'gallows humor', I s'pose.-and I was this way as an adolescent, prior to first stimulant use. just in case the thought my med is to blame comes to mind. and I was ever a long-winded/loquatious/'ratchet jawing' s.o.b., too. (as this reflects) w/&w/o my med.)

#6 sk8aplexy

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Posted 26 September 2013 - 09:58 AM

Can't follow you on that last bit there?

As for a wager, I don't go there, nor do I have $1 to.

 

I was listening, start to finish. 

During the meeting, they themselves had a few questions, for instance do PWN take anti-depressants for depression or getting to sleep easier. 

Obviously, they're not so informed.

Also, there was nothing said in regards to stimulants being more available, in a higher dosage...

There definitely were many complaints though of having to be like a drug addict to maintain, and how the tolerance build up is an issue, of the long term effect of current treatments on their teeth, and how they don't work for long.

Another question, they had, was what sort of medication would be the ideal.

The response was something effecting the Orexin directly, and/or allowing for restorative sleep, along with a loss of the brain fog), no one said anything about wanting more stimulants in higher doses though from what I can recall.

 

I'm not really annoyed with you, I just hope that actually realize how you are pretty lucky to have such a strong heart. 

Every time I've taken a stimulant my heart has had real issues, not to mention the neurological/headache issues.



#7 ironhands

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Posted 26 September 2013 - 10:35 AM

There's little doubt that stimulants work to keep people functioning, but let's try an analogy to construction.

 

Let's say there's a large patch of mold on a bathroom wall, you can cut it out, replace the damaged area and plaster up the edges.  For the most part, it'll look normal, but as you know there'd be small details that show through, and the structure wouldn't be as strong, if any weight were put on it.

 

Same could be said for a tire being patched, the patch would be fine, but it'd change pressures in other spots.

 

Most want an actual cure or treatment, not just something that compensates for the lost energy.

 

The attitude towards high-dose stimulants likely results from the liability of the doctor, due to the abuse potential, and potential damage to other organs, they wouldn't want to face a malpractice suit.  Same reason expierimental drugs take forever to get onto the market; nobody wants to take the fall if something goes bad.

 

I was on anti-depressants for a few years, they made my symptoms worse (before I knew N was a possibility).  HH, and EDS were far worse.  Adding a stim made me angry.  Most know where the problem is, so they want something to target it directly.



#8 Ferret

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Posted 26 September 2013 - 11:17 AM

I really don't think the FDA or the Doctors get it at all. It's called "Quality of Life" and you get depressed from not being a functional member of society to the best of your ability. If you can't work, you can't pay taxes...DUH! 

If I needed more stimulants than they thought was necessary or was good for me, then I should be able to sign a waiver letting them off the hook in terms of legality. It's MY life and I want to LIVE it not just limp through it.



#9 ironhands

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Posted 26 September 2013 - 11:47 AM

Most doctors don't deal with quality of life, simply extending it, otherwise we wouldn't see as many people dying slow and painful deaths for years.



#10 doinmdirndest

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Posted 27 September 2013 - 02:56 PM

I think the heart health and every other organ in me sustaining high doses is directly related to the fact that I do physically demanding labor for a living, and that in my line of work the harder you bust your ass the more you are paid, and if done consistently, 5 days a week, your job is secure.

it appears conclusive to me that many pwn could take up extreme cross training/serious free weight gym excersizes and their 'stimies' would be as well tolerated as my regimen is by me.

so the doctors could establish workout schedule criteria/methods for verifying compliance reflecting lifestyle of fitness fanatic. you'd only get your (high dose) rx if you kept 'hitting reps', and so on.

what's so disgusting about the proposal is that it's far too much like innovating. the craft of our md's involves very lttle of this.

#11 doinmdirndest

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Posted 27 September 2013 - 03:07 PM

come to think of it, my job is nothing like cross training. anaerobic excersize galore, but the aerobic content is somewhat marginal, i'd have to say.

#12 sk8aplexy

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Posted 27 September 2013 - 06:06 PM

You must be physically intensely strong.

After years and years of skateboarding, snowboarding, playing ice hockey all regulargly, I got into concrete skatepark construction, gradually.

Eventually, I worked on and off, being for a few super intense 60-80 hour weeks at a time, here and there for a couple of years.

Doing concrete skatepark construction laborer task mainly, which involved things from digging footer holes to concrete nozzle spraying and/or concrete finishing. 

Not an easy job, every moment that I had off during those weeks and for at least a couple there afterwards, I was hit up / bent up / layed up / sick with a headache and bodyache / especially within the hands and neck...

It was like school though, in that I learned a whole lot, but what a toll it took on me physically; I vomitted on the first day due to the heat combined with digging hard mud, shaping, and not being able to muscle through the headache pain (yet after vommiting whatever MiccieD's breakfast I'd had [it amazes me what most the guys I worked with, including myself at the time, eat], I did get through the day).

Cataplexy was the silver bullet though, in that career choice.  =[

 

I couldn't have tolerated stimulants, regardless, at any point.  If my heart could handle them, I'd likely be on one regularly, or at least when really needed.

I can handle decaf coffee daily, but that's it.

 

Used to think that physical exercise was everything, for health.

Now I know that diet especially, plays into it as much, if not more so...

But, I also know that we are all different, as much as we are somehow at the same time as well, the same.



#13 ironhands

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Posted 27 September 2013 - 06:13 PM

the problem with that course of action, (stims plus exercise) is that's it's a major lifestyle change.  I bike to/from work, but for many, walking from their car to the office is the extent of physical activity.  I used to have a physically demanding job, on my feet 14 hour days.  Now I sit at a desk for 8 hours, and come home and sleep.  

 

Tonight I've had 2 beer, and I'm looped.  Caffeine keeps me up all night.  Liver function has clearly been killed off since going back on gluten (having my antibodies checked next week).  Belly's swollen too.  Fun stuff.

 

As said above, we are all different, for some, N is a diagnosis, but for others, a symptom.  Our chemistries are all different.  



#14 Ferret

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Posted 27 September 2013 - 08:44 PM

Sk8aplexy said...

Used to think that physical exercise was everything, for health

 

 

"Used to"...remember that line. I know runners and skiers who are paying the price as they get older...new hips, new knees, aches and pains. My  hubby used to play hockey, tennis, squash, jog and ski...he's barely mobile now.

Stick with the slow and steady...swimming and gentle yoga...your body will thank you. My hubby at 72 can swim a kilometer non-stop in 30 minutes even with both hips replaced...a seal in the water but a walrus on land.



#15 sk8aplexy

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Posted 27 September 2013 - 08:50 PM

I definitely think light, as you say slow and steady...  ...is required at the least; topped with a diet that fits your individual health characteristics. 

My Mother is 65 and attends 3, 1 hour, aerobic classes a week and walks every day, she has no complaints.

I know that by the time I'm that age, if I make it, I won't be very mobile, at all. =][

No regrets though, it has been fun, still is and I've always known very well that pain is part of the game/s for sure, with most all sport/s activities.

I just used to think I could eat anything and not worry about sleep schedules, as long as I got a good dose of exercise in...



#16 Ferret

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Posted 10 October 2013 - 11:02 AM

Here is the link to the audio of the meeting...brought to you by Chippervan.

 

http://www.wakeupnar...-hearing-video/