Searching for an information source

[Dougg]

Greetings, all. Over the last several months, I recall seeing a post by one of the long-term members of this forum who parenthetically indicated that he or she invests a lot of time (voluntarily I presume) working in the US to try to straighten out some of the disinformation that exists around RLS, substances used to treat it (like opioids and kratom), and the like. I recall mention of the idea that the "statistics" used by certain US government agencies in arguing that we have an opioid crisis have been highly and inappropriately slanted (or are just plain wrong).

If this is you, would you mind messaging me back? I have some questions and am looking for an objective information source, as I don't necessarily trust what appears in the popular press.

Thanks.

-- Doug

[LotteM]

That will be nightdancer.

[Dougg in reply to LotteM]

Thanks!

Doug

[nightdancer in reply to Dougg]

hi, Dougg. What would you like to know? I have LOADS of information on that subject. Not so much on kratom, but anything else about disinformation with med guidelines from the CDC and the FDA, DEA, and on and on. It what I have been working on for years with advocacy groups for pain. kratom is an iffy thing, since there are NO studies on it, and there will not be in the US. Soon it will be illegal in most states and is in mine. So, I am not over the moon about it, because soon it will go the way of street drugs, as in buying it over the internet, and some people are cutting THAT with illegal fentanyl, just like they are with heroin. Let me know what kind of info you need. Always glad to help!!

[Dougg in reply to nightdancer]

Hi Nightdancer. Thanks for your help. I have two major questions.

(1)I’m an actuary who also struggles with RLS. For years, oxycodone was a life-saver for me. I’ve had an intuitive sense for some time that the so-called US opioid crisis might be more hype than reality, or possibly even a “manufactured” crisis. I’m familiar with how studies and numbers can be cherry-picked and/or manipulated to produce a certain result that a particular person, company, or government agency might want, and I would like to do some research on the numbers that underlie the conclusion that an opioid crisis exists. Would you be able to point me in a direction for the studies or base statistics from which the government or media is basing this conclusion? Or perhaps someone has already done all of this research and the results are published on the internet? I’m sure there’s lots of information out there, and I was hoping that you might be able to help me separate the wheat from the chaff in finding credible “true” information.

(2)I understand that the US government is pushing toward classifying kratom as a Schedule 1 drug. I'm trying to understand whether (a) the issue is being reasonably discussed by impartial minds, or (b) authorities have already made up their minds, so that citizen petitions and such will likely fall on deaf ears?

Again, any direction you can point me to for information would be much appreciated.

Thanks in advance for any help you can provide.

All the best,

Doug

[nightdancer in reply to Dougg]

You are right on the money, when you say the " opiod crisis" is over hyped, manufactured and any other ways we can say that. I am loaded with information on that, it is what I DO, more so than RLS these days, but it includes RLS, of course, since a LOT of us need to take pain meds for it. I am in several advocacy and activist groups. Some of the things we have found have been what we expected, but they NEVER cease to surprise us. Are you on FB? It would be soooooo much easier for me to get you the information you want over on there. That is where most of my groups are that I manage and a member in others. We have names, dates, I have attended many meetings, the latest one by a committee in Oregon, the state that would just as soon ban all opioids and the head of the FDA showed up, which was a surprise. The things that are going on blows the mind! Talk about cover ups! There is all kinds of proof, admissions of wrong doing on the CDC, etc. If you ARE on FB, send me a PM on here and we could from there. Would cut my time way down on getting you info.

[Dougg in reply to nightdancer]

Many thanks, Nightdancer. I'll send you a PM.

Doug

[Dougg in reply to nightdancer]

Nightdancer -

Wow! Thanks. I'm fundamentally interested in showing - if the data supports it - that the whole pain med crisis thing has been blown way out of proportion, or is perhaps even non-existent. So I'm looking for evidence of disinformation, perhaps through documented quotes or evidence of statistics tampering (or mis-interpretation). I realize that's broad. A starting point might be if you or someone has already published a presentation on this subject (e.g., a Powerpoint or white paper) that would give me a place to start. Or, possibly a list of disinformation incidents which I could then organize into a framework. At the end of the day, I'd like to have documented information to be able to counter the "crisis" talk with a doctor, or to present to an interested group of professionals at a luncheon talk, if the opportunity arose. The sheer speed at which the "crisis" talk began rippling through the media made me wonder if citizens have been the target of a manufactured information campaign, and I'd like to be well-armed to discuss it with friends, associates, and my health care providers.

Thanks again.

Doug

[nightdancer in reply to Dougg]

I have TONS of disinformation. For example, there is a letter from 17 doctors and researchers who work or worked for the CDC, say they knew they were hiding things and that they asked to things they KNEW was wrong. The statistics are skewed and that is admitted on the CDC web site, AND the DEA! And, of course, there is the money trail to follow to the company that makes Suboxone and conflict of interest issues, The CDC only talked to ONE doctor, who is a recovering addict, and he has a big financial interest in that ONE med, HE SAYS, it is the ONE med that should be used. He is with a small group of doctors out of NY called PROP. Google that and look for Andrew Kolodny, the CDC's "sweetheart". ETC ETC ETC

[Dougg in reply to nightdancer]

Thanks, Nightdancer. I sent you a personal message through the chat feature on this site. Please let me know if you didn't get it. No rush. Appreciate your help.

Doug