When an expert is not an expert

I used to read articles at Vice until they published an article about cannabis that was ignorant and wrong. Let’s see what Vice is getting wrong today, shall we?

This article is full of incorrect statistics and biased conclusions that are endemic in the media. And guess who Vice chose as their addiction “expert”?

http://www.news.vice.com/story/opioids-chronic-pain

The CDC insists it isn’t trying to create barriers to legitimate treatment. The new guidelines, the agency says, are the result of extensive input from “experts” and a thorough review of the available “evidence.” They don’t explicitly rule out opioids for chronic pain, but they do send a clear message that opioids should not be considered a first-line treatment…

I’m sure everyone’s experience is different, but my experience has been that doctors don’t consider opioids as a first-line treatment for anything except acute pain, if then. This makes it sound like chronic pain patients just want an easy fix, the pills. That’s very wrong (as my bank account can attest). In other words, the CDC didn’t need to create regulations because of this issue. I’d say that about 95% of doctors already practiced that way. But wait, we need to punish that 5% of doctors who aren’t following the rules, just like we’re punishing pain patients for those who suffer from addiction. Because drug war.

Alternatives do exist. For instance, the CDC says exercise therapy has been shown to improve physical function in some patients. Non-opioid medications, such as acetaminophen or ibuprofen, can be useful for conditions like arthritis and lower back pain, and some antidepressants and anticonvulsants are also effective.

Tell me, how are people in pain supposed to exercise without any pain relief? Sure, exercise will improve my physical function, but why would I want to increase my pain levels without anything to relieve the increased pain? That would make me stupid. Or a masochist. And speaking of masochists…

Hey Kolodny, are you going to treat the conditions that arise from taking acetaminophen or ibuprofen on a long-term basis? Even the CDC advises against that. How about when an antidepressant causes suicidal ideation? Do your addiction centers treat that, too?

In 1996, the American Pain Society launched its influential “fifth vital sign” campaign, giving pain equal billing with blood pressure, pulse, temperature, and rate of breathing… Just as the “fifth vital sign” campaign encouraged physicians to prescribe opioids indiscriminately…

The media and the medical industry love to place blame on the fifth vital sign. Tell me, what does monitoring pain levels (along with blood pressure, etc.) have to do with drug addiction? No, no, no, the fifth vital sign campaign did not encourage doctors to prescribe opioids indiscriminately. That’s doctors talking, blaming overdoses and addiction on pain patients.

That same year, Purdue Pharma released OxyContin, a powerful painkiller sold as a slow-release pill, which the company aggressively marketed as a godsend for pain patients, often to doctors with little knowledge of abuse-disorder warning signs. OxyContin was a blockbuster, reaching sales of over $1 billion by the end of the decade. But it turned out the drug was also pretty easy to crush, snort, and inject for a high — and Purdue downplayed the risk of patients becoming addicted. In 2007, the company and its executives agreed to pay fines of $635 million for misleading the public.

Sure, blame Purdue. Don’t blame doctors, who use ignorance of treating pain and addiction as the reason for Oxy’s popularity. Bullshit. Doctors have always known that Oxy is addictive. All painkillers can be addicting in a small percentage of patients and doctors know that.

One study the CDC looked at showed that dependence among patients on opioid therapy was as high as 26 percent…

Actually, there are studies that show the addiction rate for pain patients at about 3% to 10%, but the CDC wasn’t interested in any information that was contrary to what their “experts” wanted. Why would the CDC base the treatment of pain on this one study? And why is the CDC making regulations according to 26% of the population? What about the other 74%? I can’t be sure, but I believe that constitutes a majority.

But if the evidence doesn’t support opioid treatment for long-term pain, why are so many chronic pain patients convinced they need the drugs to function? Andrew Kolodny, an influential substance-abuse expert and one of the country’s most vocal critics of opioid overprescribing, thinks he has a pretty good answer. Those patients, he says, are probably dependent on the drugs and may be addicted.

Actually, the lack of “evidence” to support opioid treatment for chronic pain has more to do with who funds the research. No one wants to fund research for chronic pain, even if they could find volunteers who would agree to treat their pain with a placebo. Those funding research on pain are connected to addiction, like the NIDA. And when others perform research on pain, if it doesn’t comport with the government’s program on addiction, the research is buried or not even published.

Kolodny doesn’t waver when I mention the desperation I’ve heard from sufferers. “You’ve found a group of very vocal patients who are convinced that everyone is trying to take their opiates away from them,” he said. “They believe that the CDC guidelines — that advocacy groups like mine — that what we’re really after is stopping drug abusers, and that they’re being made to pay the price. That’s totally not what’s going on. What’s motivating us is an understanding that opioids are lousy drugs for chronic pain.”

Pain patients are having their medications taken away from them — not just opioids and not just pain patients. Doctors don’t want to treat any kind of pain because they’re scared. No, doctors would rather blame pain patients, stop treating them, and move on. How many pain doctors have switched to treating addiction (see the first link following my rant)?

Kolodny reminds me of people who think that addiction doesn’t exist. I think he believes that chronic pain doesn’t really exist. For Kolodny, only addiction exists.

Anyone who says that opioids are lousy drugs for chronic pain has never suffered from chronic pain — and is an ignorant asshole. This is who the CDC used as an “expert.”

For consensus, Kolodny says to look to the country’s leading pain clinics. The Cleveland Clinic, the Mayo Clinic, and the Washington University School of Medicine are a few of the institutions whose experts now say long-term opioid treatments are ineffective and risky. But there are still pain specialists who disagree…

Why doesn’t the media talk to patients who’ve been treated by these allegedly illustrious clinics? I want to hear from them. Actually, I do hear from patients who’ve been treated at these clinics, in comment sections all over the internet. And it’s nothing good.

“The language that they’ll use to describe how they think opioids are helping them is the exact same language my heroin-using patients use,” Kolodny told me. “I’ve been treating opioid addiction for about 15 years. They use the same exact language: ‘Doc, imagine what it feels like every morning — feeling like you’ve been hit in the chest with a baseball bat until you take your first dose.’”

First of all, Kolodny is neither an addiction expert or an expert on the treatment of pain. He’s a dickhead with a lot of power and money behind him, hoping to move up to bigger and better things, probably in politics.

How much has Kolodny’s income increased since he joined the opioid war? How many patients have died while being treated at one of Kolodny’s addiction clinics? Why isn’t he being held responsible for these deaths, like pain doctors are being prosecuted for their patients’ deaths? Why doesn’t the media include the crimes being committed at these clinics when using Kolodny as an “expert”?

Kolodny says he’s been treating addiction for 15 years. Has he ever suffered from addiction or chronic pain? I’ve suffered from intractable pain for 30 years and I think I know more about addiction than he does.

In Kolodny’s view, these patients are feeling better from opioids not because the medication is treating an underlying pain problem but because it’s treating their withdrawal pain. And his view holds a lot of sway….

Really? Seriously? Well, Mr. Kolodny, I haven’t taken opioids to treat my intractable pain for about 6 years now. Why am I still in a suicidal amount of pain? Because the “pain problem” is not an underlying condition — it is the main condition. And it deserves treatment, just like any other medical condition.

Even Kolodny concedes that some patients have been on opioids so long that they may never be able to function without them. Long-term use can cause physical changes in the brain that are potentially irreversible. “What we don’t want is for primary care doctors to just start firing these patients,” he said. “That would be really bad. It’s a problem that we need good solutions for.

Chronic and intractable pain can also cause physical changes in the brain that are not “potentially” irreversible, but always irreversible.

Thanks to the CDC and the media, Kolodny is the #1 enemy of pain patients. And I think he enjoys being seen this way, as it makes him look like a hero to all of his followers. If he can diagnose me as a drug addict because I suffer from intractable pain, then I’m diagnosing him as a masochist who enjoys seeing people suffer. That’s probably why he got into treating addiction in the first place.

Hey, Kolodny, pain patients are being abandoned left and right, and have been for years. Where the fuck have you been? I know, your only interest is addiction. You care nothing for pain patients, yet you claim to be an expert and the CDC and the media treat you like one. But I know what you are. I know you’re partially responsible for an immeasurable amount of suffering and many deaths. How the fuck do you sleep at night?

http://www.nationalpainreport.com/15-years-with-my-pain-dr-and-my-last-appointment-became-my-final-appointment-8831814.html

http://www.painnewsnetwork.org/stories/2016/10/25/unwilling-to-suffer-in-silence-over-cdc-opioid-guidelines

Jo
I have had reflex sympathetic dystrophy since I was 13 I am now 39. My left leg was amputated due to complications from the RSD. Unfortunately it spread to my right leg about ten yrs ago and again I’m have major complications. I was in fentanyl pops along w Oxy contin and both were helping me make it through the day . The insurance company or drug company changed the label on the fentanyl to cancer patients only and took out chronic pain sufferers. So now my insurance co will no longer cover it bc I do not have cancer. I was on this drug for years , I didn’t abuse I didn’t sell it I used it bc I’m in extreme pain and it helped, but now that was taken away. My legs keep getting worse I have terrible phantom pain in addition to the RSD pain in both legs and my right arm spread to…

Tina
I had my right hip replaced in 2014. DDD, osteoarthritis, and avascular necrosis on top of rheumatoid arthritis disease. During the surgery the muscle tore off the bone creating an avulsion fracture. Discharged home with a prescription. I went 2 weeks not being able to do my physical therapy or anything for that matter all because non of the pharmacies in our area that accepted my insurance would fill the prescription. Talk about torture.

http://www.petition2congress.com/5202/first-do-no-harm-dea-targets-physicians-who-treat-their-patients/comments/page/350

Doris W. from Lyman, SC writes:
My son is a dialysis patient with a severely deteriorated body. He has severe and very painful bone disease, osteomylatia, with bone forming throughout his body. He currently has open wounds on his legs and scrotum that won’t heal. His health is being undermined because he is in so much pain that he can not complete his hemo dialysis treatments, yet we can find anyone who will provide him pain management. All his doctors say they no longer write opiods. They are AFRAID to do so or it’s against their corporate owner’s policy. He is only 37 years old and doesn’t want to give up treatment. This is terrible malpractice and a real shame in a first world country.

Sharon S. from Wilmington, DE writes:
I am a cancer patient; stage 2 lymphoma and the chemo drugs have left me with peripheral neuropathy. Not finished with this devastation yet. The pain from this condition is with me every day now. After several requests to my doctors for pain meds, I was prescribed Gabapentin. Doesn’t work. After reading through the comments here on this site regarding the failures of the American Medical system and the many people who are suffering as a result, I have to say, I am not at all surprised but I am scared.

Malinda S. from Memphis, TN writes:
Yeah I asked my doctor about the First Do No Harm. He told it wasn’t my license on the line. That was when I truly no longer wanted to live. I felt nothing. With no insurance and trying to get my disability, I am no longer per my neurologist allowed the take pain meds over the counter or prescription. So I have to live in pain 24/7. I have to smile when I want to cry but one of my diseases keeps me from psychically crying. I am in constant pain in my bones, joints, muscles, & chronic migraines. I may be in pain everyday and night, the constant is that I keep loosing friends and family. They just don’t want to deal with me anymore.

Mark N. from Brookfield, IL writes:
For the pain I’ve been put through and the way that I’ve been treated since the beginning of this year, I will, as long as I live never trust or respect Doctors again.

As many times as I try to release my anger, it comes back. Reading about the suffering of other pain patients brings back painful memories for me, but I can’t stop. Maybe I’m the masochist.

Modern day torture

http://www.painnewsnetwork.org/stories/2016/9/12/half-of-patients-have-trouble-getting-pain-meds

Under comments:

David B. 13 hours ago

My doctor is pain management specialist/anesthesiologist, impeccable record, highly skilled & has controlled my pain more than a decade. My dosage has never increased, nor have I asked for it to be. I’ve never failed a random urine test. My doctor has shown genuine care through some rough patches over the years, more like a friend or brother. I was in excruciating constant pain from spina bifida and frozen shoulder from botched post-op care. My life has been full & productive once I found this doctor. Before that I had 2 concrete plans for suicide w/ everything I needed to carry one or the other out–& every intention to do so once my affairs were in order.

Last week, with no warning, my doctor refused to prescribe more than half of the amount I’ve been on almost 11 yrs. I’m in complete shock. I’m trying to stretch the meds out but I’m getting sicker and sicker from withdrawal. I was too shaken to hear all he said but now knowing what the Feds have done, I believe next month he will send me home with nothing. I’m a widower w/ no living children. My late wife and I had two babies– both were born with spina bifida (years before my own “occult” condition was discovered). Our son died at 17 months, our baby girl at just 20 days. We never allowed ourselves another pregnancy.

A chiropractor suspected my occult spina bifida ten years after my year in Vietnam (drafted) and after our babies were born and died. A neurologist diagnosed it. I worked with pain–took a lot of OTC meds that got me thru, until the shoulder surgery mistake landed me in chronic pain that was unbearable. I never imagined my fantastic doctor would betray me, that the country I fought for would do this to me, to so many of us and most likely more to come. As a veteran, in my opinion, this is torture pure & simple.

Never thought I’d say this but I’m GLAD my dad, a WWII vet who spent 3 years fighting the Nazis in Europe, isn’t alive to see what this country is doing to us. And I’m glad my wife, who was my childhood sweetheart, my first and only love, isn’t here to see me like this. If I can’t find another doctor, tho even if I do, how long before he cuts me off too? I can’t live in agony. I won’t. Why should I when in the blink of an eye I can be 100% whole again and with my wife and my little son and daughter? I will pray for all of you.

God help us all.

Doctors suck

http://www.nationalpainreport.com/my-fight-with-the-va-updated-8831025.html

Then last month I was given a new Primary Care Physician (PCP) at the Palm Desert, VA who told me in a phone conversation that the VA, Loma Linda had sent all the PCP’s a “memo” giving them the right to refuse pain medication to any Veteran who uses Medical Marijuana, if they so choose. So she refused to give me the pain medication I need as long as I use Medical Marijuana and has refused to care for me, a 100%, SC Disabled Veteran…

“I can find no scientific evidence to support this statement.”

I’m tired of refuting all the lies published by the New York Times. And I have to say that the once-revered profession of journalism has certainly fallen on very hard times.

http://www.nytimes.com/2016/06/07/health/opioid-limits-older-patients-pain.html

Under comments:

John, Burlington, VT, June 8, 2016
“Older adults don’t metabolize drugs as well as a 30- or 50-year old, so the medication stays in a person’s system longer,” Dr. Reid said.

I can find no scientific evidence to support this statement.

David X, new haven, ct, June 6, 2016
As an older person who was totally healthy until a cardiologist pushed a statin drug on me, this article is doubly infuriating. At age 69, I carried 30 opioid pills to Nepal, trekking in the mountains, just in case of injury. I returned with all 30 pills.

At age 70, after 7 months on low-dose statin, I was in constant pain and couldn’t walk around the block. Now I do need pain relief. Ironic? Maybe, but not uncommon.

1/4 of Americans over 40 are on statins. 1/4 of this number (about 8 million Americans) complain of muscle pain.

No one knows about causality, since there would be no profit from knowing, but the growth in statin use exactly parallels the growth in opioid use. No one seems to know or want to know if those on statins take more opioids than the general population.

There are lots of medications that American doctors need to prescribe less, statins at the top of the list. Statinvictims.com

catrunning, pasadena, ca, June 7, 2016
Wow – this is real sadism, intentional or not, on the part of the government and medical providers masquerading as “preventative medicine”. Do those bright minds who are denying elderly pain patients a modicum of relief really believe that they are stopping all those recreational drug users in their tracks? Are they refusing to acknowledge that the recreational people have already transitioned to heroin, which is actually considerably cheaper and much easier to acquire than pills anyway.

If I sound bitter, it is because I just lost a good friend to suicide due to untreated pain. She could no longer stand the agony from a rare auto immune, degenerative disease that has no cure nor remission. After she was cut off opiates by her pain clinic because they had no CDC or whatever agency published guidelines for prescribing them in connection with her very rare disease, her life was reduced to just enduring endless agony. I even offered to get her heroin to try, but she wouldn’t let me take the risk. In retrospect, I wished I had forced the issue.

Finally, a sane voice in the opioid war

http://www.theguardian.com/us-news/commentisfree/2016/jun/08/opioid-epidemic-drug-mix-overdose-death

Our current obsession with opioids is just the latest trend in a long history of scapegoating single drugs: alcohol in 1830s and 40s, opium in 1870s, marijuana in the 1950s and 60s, crack cocaine in the 1980s and 90s, methamphetamine in the 1990s and early 2000s and now, opioids like heroin, Oxycontin and Fentanyl. The problem of multiple-substance use has remained absent from much of this conversation – and from the education of users and health practitioners – despite the fact that drug mixing is both dangerous and pervasive…

By fixating on fearing opioids, we are missing the more culpable factors that lead some people to keep using drugs despite negative consequences. Opioid use on its own is not dangerous, and it’s time we stop demonizing it. Instead, we must implement a national overdose education strategy targeting the immediate factors of opioid-related overdose: drug mixing and tolerance changes.

Under comments:

cowboy335 2d ago
The thing politicians and others don’t understand. We have a pain epidemic not a drug epidemic. People are in mental and physical pain from life and the controllers of medicene say no. What do you do . Heroin, methadone, vicodan. I am a 64yr old combat Vietnam Vet. I take what I need for pain. I do believe I am old enough and don’t need others to decide for me. That happened when I went to serve in Vietnam. Freedom even if they don’t decide to free me. I have freed myself.

panamadave 2d ago
I am 70 years old and in pain. I really don’t give a damn what some politician wants me to do

Samson151 2d ago
I think the author may have misinterpreted what happens in an OD situation. The user combines an opioid with other CNS depressants in order to overcome his or her greatly elevated tolerance and once again get high. It’s the same motivation that drives addicts to seek out new varieties of heroin laced with fentanyl. It’d be wrong to assume that if we could just convince them to stick to opioids only they’d be fine — they’re not going to do that. From the addict perspective, the opioid is no longer enough…

There are many reasons that pain patients take more than just painkillers, including drugs like muscle relaxers, anti-anxiety meds, antidepressants, anticonvulsants, and blood pressure meds. Suffering from chronic pain is not just about the pain and many patients have comorbid conditions. And all of these additional meds can work in conjunction with painkillers, increasing their effectiveness. Because, let’s face it, opioids can only do so much. And remember, even though opioids work for most people, there are still millions of people who can’t take them.

One of the shortcomings of an opioid is that it treats pain and that’s it. And when there’s pain, there’s usually more to treat than just the pain. But then, most drugs are focused on treating only one condition, just like opioids. Then some people end up taking a bucket full of different drugs to treat each symptom, on the advice of doctors. And this can result in overdose and death, even if it’s only in a very small portion of most patient populations (with the exception of those who suffer from addiction).

When the drug war ends, the overdose and death rate will decrease significantly, but it will never be zero. We’re humans, not robots, and mistakes will be made, both by patients and doctors. But keep in mind that more mistakes are made by doctors — the so-called professionals — than by patients themselves.

This would be a good time to point out one of the benefits of cannabis, in that it treats more than one symptom, no matter what your medical condition. For some patients, it will be able to replace that bucket full of pills, but not for all.

CNN sucks

Tue, Jun 7, 2016 9:18 pm
To: Carrie.Stevenson@turner.com, Desiree.Adib@turner.com
Re: I don’t watch CNN because…

Dear Ms. Stevenson and Ms. Adib:

The CNN broadcast of an Anderson Cooper interview on the prescription opioid/heroin “epidemic” is just one example of why I don’t watch CNN. Tell me, how are your viewership statistics? Let’s ask the internet, shall we?

http://www.journalism.org/2015/04/29/cable-news-fact-sheet/

Do ya’ll think that CNN will be remembered for championing the drug war? For being on the wrong side of history?

As a 30-year intractable pain survivor, if I thought CNN really wanted to hear and report on the side of pain patients, I would include a link to my blog. But just like your corporation couldn’t be bothered to find the truth, I can’t be bothered to watch lies.

Johnna Stahl
Albuquerque, New Mexico

Censoring the comments of pain patients

http://www.salem-news.com/articles/may172016/stigma-opioid-epidemic-ms.php

By:  Marianne Skolek-Perez, Salem-News.com “Investigative Reporter”

(MYRTLE BEACH, S.C.) – This past week CNN broadcast an Anderson Cooper interview on the prescription opioid/heroin epidemic at a Town Hall Meeting.

CNN has been accused by the U.S. Pain Foundation, a lobbying group for pharma in catering to the needs of chronic pain patients in their use of long term opioids, at stigmatizing the pain patients…

Mr. Gileno charged that a woman in the audience named Kay Sanford was the only person with pain — and on prescription opioids for “25 years” given the opportunity to speak. He was appalled that Ms. Sanford was interrupted by both Anderson Cooper and Dr. Drew Pinsky during the broadcast and were dismissive of her pain journey.

Gileno further stated that those on the CNN panel “had the audacity to say her story was the minority.” I recall that Ms. Sanford proudly stated that she walked a mile and a half three times a week and swims even while taking prescription opioids for her chronic pain condition — for 25 years.

Strange though that people in attendance at the broadcast watched as Ms. Sanford was assisted to be seated and subsequently assisted from her seat after the broadcast.

Yet she is a walker of 1-1/2 miles and swims? …

Do you know what matters Mr. Gileno?

It is that we are losing a generation of young people to the prescription opioid epidemic now leading to soaring heroin usage. Stigma of the chronic pain patients? Give me a break…

This country has an over abundance of opioids prescribed to pain patients — many long term who are addicted — hook, line and sinker. The stigma is that your foundation is funded by the pharmaceutical industry and pharma controls the FDA. Thereby, the approval of so many dangerous and addictive opioids being prescribed not only to your “pain patients”, but to young people, Addiction is the culprit.

Notice I don’t use the word “dependent” and I won’t. As long as the U.S. Pain Foundation “advocates” for pain patients and their long-term use of opioids, the addiction and death toll will rage out of control…

CNN and other news media need to keep this epidemic in the forefront. Lives depend upon it.

Email addresses for the CNN producers are: Carrie.Stevenson@turner.com & Desiree.Adib@turner.com

On February 17, 2015 I wrote an article asking why an advocate/official of the U.S. Pain Foundation was allowed to perform antics during hearings on the Senate floor, lying on a yoga mat, while giving testimony about chronic pain.

Why the yoga mat though? Well it seems the senators conducting the hearings allowed her to lay on the Senate floor on her yoga mat and testify using a hand held microphone because in the 1990’s, she sustained an injury.

Bizarre? No it is shame on the senators during these legislative hearings in allowing this disrespect for the tens of thousands of families who suffer pain in the loss of loved ones — and they do not use theatrics in total disrespect for this health crisis…

All comments and messages are approved by people and self promotional links or unacceptable comments are denied.

My comments, all of which have been censored on this website:

Comment #1:

As a 30-year intractable pain survivor, I can’t add anything to this comment section that hasn’t already been said. Instead, I’ll share some poems that I’ve written, words that I think about every single day.

Please kill me
Just kill me now
I’ve suffered enough
and how

Suffering
shuddering
pain roaring
thundering
overpowering
head hammering
eyes watering
thoughts scattering
body lumbering
no glimmering
time shuttering
heart hardening
life guttering
bad thoughts whispering
pain is poisoning

I can easily
picture myself
on my deathbed
denied pain relief
denied dignity
Frightening

https://painkills2.wordpress.com/2015/12/27/uncontrolled-pain/

Comment #2:

How long does it take for you to approve comments?

Comment #3:

I absolutely abhor censorship, especially when it’s done out of selfishness.

Last comment:

When fear causes you to censor my words, you steal my voice. When you steal my voice, you silence me. That’s what you think will happen, but it’s not true. Because when you have your own blog, with terms searchable through Google, your voice can reach whoever’s listening.