Benzodiazepines Get Positive Reviews on Twitter

By Pat Anson

Benzodiazepines have gotten a bad reputation over the last few years. The anti-anxiety medications were once commonly prescribed to pain patients, until fears rose that Valium, Xanax and other benzodiazepines could lead to an overdose when taken with opioid medication.

In 2016, the FDA warned of a “public health crisis” because overdose deaths involving opioids and benzodiazepines had nearly tripled. That was followed in 2020 by updated FDA warning labels that strongly cautioned patients and doctors about the risks of benzodiazepine abuse, addiction and dependence.

It turns those public health messages have fallen flat, because many patients have entirely different attitudes about benzodiazepines. In an unusual study of social media posts on Twitter (now known as “X”), researchers found that over half the tweets praised how effective benzodiazepines are, with minimal discussion of their side effects.

“Social media platforms offer valuable insights into users’ experiences and opinions regarding medications. Notably, the sentiment towards benzodiazepines is predominantly positive, with users viewing them as effective while rarely mentioning side effects,” wrote lead author Óscar Fraile-Martínez, an academic researcher at the University of Alcalá in Spain.

Fraile-Martínez and his colleagues analyzed over 11,600 English-language tweets that mentioned benzodiazepines in 2019 or 2020. Zolpidem (Ambien), lorazepam (Ativan), and clonazepam (Klonopin) were the most frequently discussed medications.

Over half the tweets (57%) were posted by patients or their relatives, while healthcare professionals authored less than 1% of them. The remaining tweets were posted by other users who couldn’t be classified.

The study findings, published in BMC Psychiatry, show that only about 5% of the tweets discussed adverse side effects from benzodiazepines, such as daytime sleepiness, impaired cognitive functioning, memory problems, reduced mobility, and increased risk of falls and fractures.

Notably, a significant percentage of patients reported combining benzodiazepines with other psychiatric drugs, or with alcohol and other addictive substances. Yet there was hardly any discussion of overdoses, dependence or withdrawal.

Researchers say the minimal discussion of side effects may be due to the nature of social media, where posts tend to be shorter and provide little detailed medical information.  

“The predominance of positive mentions about benzodiazepines’ efficacy on Twitter could be due to several factors. Users may share personal experiences that highlight immediate relief from anxiety and insomnia, which are the primary benefits of these medications. This focus on short-term effectiveness may occur because individuals seek validation and support for their experiences or advice on similar issues, thus emphasizing positive outcomes,” wrote Fraile-Martínez. 

So who is right? Twitter users with positive views about benzodiazepines or public health experts who think the medications are potentially dangerous?    

The researchers in this study took the latter view. They say their findings show “an alarming minimization” of the risks associated with benzodiazepines and called for expanded efforts to educate physicians, patients, and families about their use.

Doctors who heed that advice may want to think twice about tapering patients on long-term benzodiazepine treatment. A recent study found that cutting off or rapidly tapering patients on benzodiazepines nearly doubles their risk of dying within a year. Deaths from suicide, accidents and other causes rose for patients after benzodiazepines were discontinued.

Study Warns of Fake Cannabis Posts on Twitter

By Pat Anson, PNN Editor

Russian trolls and bots aren’t the only ones using social media to try to sway public opinion.

A USC analysis of thousands of cannabis-related posts on Twitter found that social media bots regularly make unsubstantiated health claims that suggest that cannabis can help treat pain, cancer, sleep, anxiety, depression, trauma and post-traumatic stress disorder. 

Researchers say their findings, published in the American Journal of Public Health, illustrate how false statements can be used to drown out facts and science on social media.

"We're in a period of time where these misleading messages are pervasive online," said lead author Jon-Patrick Allem, PhD, assistant professor of preventive medicine at USC’s Keck School of Medicine. "We want the public to be aware of the difference between a demonstrated, scientifically-backed piece of health information and claims that are simply made up."

In the United States, cannabis-based medicines are only approved to treat nausea and vomiting caused by chemotherapy, to stimulate appetite in patients experiencing weight loss, and to reduce seizures caused by childhood epilepsy. Many of the tweets made by bots suggest cannabis can help with a variety of other health problems, including foot pain and Crohn's disease.

For the study, researchers identified over 60,000 cannabis-related tweets posted from May 2018 to December 2018. Then they used an academic research tool called “Botometer” to analyze the posts to determine which ones came from real people and which ones were generated by bots that use software to automatically generate posts.

‘Content Polluters’

About 9,000 of the cannabis tweets appeared to come from bots, which were twice as likely to mention health and medical benefits of cannabis than non-bots. Researchers found no references to FDA approved uses for cannabis in the tweets.

The USC study did not look at the individuals or organizations behind the bot-generated posts about cannabis.

"Raising the issue of these false claims by social bots is an important first step in our line of research," Allem said. "The next step will be to examine the self-reported levels of exposure and beliefs in these claims and perceived risks and benefits of cannabis use, intentions to use and actual use."

Another recent study found that bots and other “content polluters” were active on Twitter in fueling the debate over the health benefits of vaccines.

“Content from these sources gives equal attention to pro- and antivaccination arguments. This is consistent with a strategy of promoting discord across a range of controversial topics—a known tactic employed by Russian troll accounts. Such strategies may undermine the public health: normalizing these debates may lead the public to question long-standing scientific consensus regarding vaccine efficacy,” said lead author David Broniatowski, PhD, School of Engineering and Applied Science at The George Washington University.

In 2018, Twitter suspended more than 70 million fake accounts that appeared to be using bots to make posts.

PNN’s Twitter account was recently suspended for 12 days for violating Twitter’s rules against “platform manipulation and spam.” The account was reinstated after we appealed. PNN does not use bots or promote any products or services in its tweets.

A Pained Life: An Activism Primer

By Carol Levy, Columnist

Those of us who write columns and articles, or comment and tweet about chronic pain, beat the same drum, repeatedly: The world needs to hear us. We have to make our voices heard.

Unfortunately, the most common response seems to be along the lines of “We can't.”

The reasons make sense. Pain and disability keep many of us from being able to go to a rally, representative's office or a town hall meeting. Others say “I want to make my voice heard but I don't know how.”

I'm going to take my space today to give some ideas on how.

The latest outrage is Attorney General Jeff Sessions telling the country people in pain should just “tough it out.”

Because of my eye pain, I cannot write a long letter to him. He is not someone you can access merely by going to his office. Or find him on Twitter or Facebook.

You can, however, tweet to him at the Justice Department: @TheJusticeDept or leave a comment on their Facebook page: www.facebook.com/DOJ/

I sent a tweet. I included a video about my fight and struggle to live with trigeminal neuralgia: what it is, what it has done to my life and what it has taken from me.

Do you have the ability to make a short video explaining your pain disorder and what it has done to your life?

If you have been hurt by the CDC opioid guidelines, can you tell them how? You can you tweet, for example: “CRPS has taken my life from me. Opioids have helped me to get some of it back.”

You could also tweet: “Opioids helped my chronic back pain. I was able to work, play with my kids and have a better quality of life. The CDC guidelines caused my doctor to reduce/stop them and I can no longer do those things.”

You could also find a link on the internet that describes your pain disorder and post it to Facebook: “This is what rheumatoid arthritis is. This is how the pain impacts us.”

If possible, you could also go to town hall meetings, offices or rallies where your legislators will be. I recently went to a town hall meeting on the opioid epidemic. Included on the panel were my congressional representative and one of my county commissioners. We had to submit our questions on a card rather than just ask them.

This was the second town hall meeting where my question, “How can you keep chronic pain patients safe when we are being blamed and often hurt by the actions being taken?” went unanswered.

Undeterred, I made sure to get to the congressman and the commissioner before they left the room. I made sure to come prepared with information, such as studies showing how rarely we get addicted and how the number of suicides appears to be increasing as opioid medications are being reduced or stopped.  

Two years ago, I asked my congressman if he could introduce a resolution making October 7 Trigeminal Neuralgia Awareness Day. I was told the House was no longer permitting those kinds of resolutions. Instead of throwing up my hands and walking away, I asked again the following year. This time he was able to do it.

To my astonishment, when I spoke with him the second time he remembered not only that Trigeminal Neuralgia Awareness Day was in October but some of the specifics about the condition itself.

This may help him remember us -- all of us – the next time Congress debates  the opioid epidemic. Chronic pain is more personal to him because of his encounter with me.

If at first you don't succeed is a cliché for a reason. It is worth writing, calling, visiting and emailing. The worst they can do is ignore you or say “No.” But trying another time may just get them to say “Yes.”

The tortoise didn’t give up when it looked like the hare was winning. We cannot afford to give up either.

Carol Jay Levy has lived with trigeminal neuralgia, a chronic facial pain disorder, for over 30 years. She is the author of “A Pained Life, A Chronic Pain Journey.” 

Carol is the moderator of the Facebook support group “Women in Pain Awareness.” Her blog “The Pained Life” can be found here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

5 Reasons to Max Out on Twitter for PainWeek

By Margaret Aranda, MD, Columnist

More than ever, you need to be on Twitter this week if you love to advocate for pain patients. That’s because PainWeek begins Tuesday, September 5th and runs through Saturday, September 9th at the Cosmopolitan Hotel in Las Vegas.

You won’t find many patients at PainWeek, but there are plenty of doctors. PainWeek is the nation’s largest annual conference for healthcare providers who practice pain management. Over 2,300 physicians, nurses, pharmacists, dentists, psychologists, and social workers will attend seminars on topics ranging from analgesics of the future to opioid constipation to a debate on whether urine drug testing is necessary.

Why should you care about PainWeek and why should you be maxed out on Twitter?

Tweets to #PainWeek are going to get a lot of eyeballs, not only from PainWeek organizers, but doctors, pharmaceutical companies and the news media. It's a good opportunity to show them what pain sufferers are feeling and thinking.

Tweeting is also a great way for patients to spread information and awareness about chronic pain to new pairs of eyes. When you do that, it’s called an "impression.” When someone comments or replies to your Tweet, that's an "engagement.” And when you get a “Retweet” – also known as an #RT -- that's the biggest compliment a Twitterer can give to a fellow Twitterer.

Here are 5 ways pain patients can use Twitter:

1) Advocate: The more people see your Tweets, the more you empower people to step out and be bold for themselves and for others that are suffering in pain. Use uplifting images, music, or quotes interspersed with your Tweets to help get positive attention.

2) Prevent Suicides: The ultimate goal of an advocate is to prevent the most severe outcomes of unrelenting, persistent pain. Those would be patient suicide, spousal suicide, and physician homicide. If we can spread the word about these emerging problems, we can help others hang onto their lives until the nation finally recognizes what is happening in the pain community. 

3) Use Hashtags: Worldwide patient advocacy can reign on Twitter. Try to use 6 to 8 hashtags per Tweet. In addition to #PainWeek, here are some great hashtags to use for the widest outreach:

#bedridden #broken #ButYouDontLookSick #chronic #chronicillness #chronicpain #ChronicPain #disabled #Disability #edRecovery #epatient #ehealth #HomicideDue2Pain #IAmNotANumber  #invisibledisability #invisibleillness #livelife #MedEd #MedX #NoCure #opioids #opioidcrisis #pain #PainManagement #patients #PatientEngagement #PatientExperience #PatientsFirst #PatientsIncluded #PatientsLikeMe #patientsafety #PatientsUnitedForDEAReform #ptsafety #spoonie #Spoonies #SpoonieProblems #SpoonieSpeak #StoriesNotStigma #suicide #SuicideDue2Pain #SupportVeterans #Vets #Veterans

4) Grow: What if every one of us had 10,000 followers each? It's one thing to have something to say, and another thing to show it to as many pairs of eyes as possible. Twitter is very reciprocal, so follow everyone who follows you.

For the same reason, if someone Retweets you, try to Retweet back or at least “like” a few of their Tweets. That's Twitter's culture. It’s reciprocal. 

5) Inspire and be inspired. We learn and grow every day. Sometimes we teach and sometimes we learn from our students. If you love to write or advocate for patients, consider starting a free blog where millions of authors go: Wordpress.com. This way, when you Tweet, it could be one of your own articles, and you can drive traffic to your own website by Tweeting your blog’s address.

#PainWeek is poised to be the most Tweeted pain meeting of the year, so join in on the fun!

"Be empowered to empower." 

Dr. Margaret Aranda is a Stanford and Keck USC alumni in anesthesiology and critical care. She has dysautonomia and postural orthostatic tachycardia syndrome (POTS) after a tragic car accident left her with traumatic brain injuries that changed her path in life to patient advocacy.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

#PatientsNotAddicts Campaign Launched on Twitter

By Ken McKim, Guest Columnist

There’s a hashtag coming to a screen near you: #PatientsNotAddicts. Its importance to the millions of people who suffer from chronic illness cannot be overstated.

Words matter. Words are powerful. They can educate, but they can also blind. They can sway the opinions of millions of otherwise thoughtful and intelligent people through nothing more than simple repetition, even if the information they repeat is patently false.

In a 1992 study by McMaster University researchers, it was shown that people give more weight to something they hear repeated over and over again, than something they have only heard once. People will do this even if the person repeating the information has proven untrustworthy in the past on multiple occasions. Repeat it often enough, and a lie becomes the truth.

We see this all the time in life. It’s why advertising exists, and why politicians will never completely stop using negative campaign ads. Its how one discredited doctor was able to scare the daylights out of millions of Americans about the so-called dangers of vaccines, thus leading to a resurgence of diseases that had previously been all but eradicated, like measles and whooping cough.

This same tactic is now being used against medications that give relief to millions of people who are fighting cancer and chronic illness: opioid-based painkillers.

There’s no better way to ascertain public opinion on a subject than by Googling it. In this modern century of seemingly unlimited information, Google serves as society's mirror, reflecting back to us the truth of how we feel about any given subject. It’s not hyperbole to say that as Google goes so does the world, and this is especially true when it comes to the subject of opioids.

A recent search of Google using just the word “opioids” found that 50% of the search results had to do with addiction and abuse. Only 4% of the results dealt solely with the proper use of opioid pain medication.

It’s plain to see that media coverage on the subject of opioids skews overwhelmingly negative, and the average person researching the topic will come away with an equally negative (and unknowingly distorted) opinion of them.

It’s this negative societal view that the CDC was probably counting on to divert attention from their covert attempt to issue new prescribing guidelines to severely limit the prescribing of opioids. The webinar they held on the subject last September was an invitation only affair. No press releases were issued, and the period of time allotted for public comment was a paltry 48 hours (which was laughable considering most of the public had no idea this was taking place). 

If not for the vocal pushback from the chronic illness community and organizations like the Washington Legal Foundation, these new guidelines would already be a fact of life for all United States citizens. Sadly, these guidelines are now the law of the land for our wounded veterans, as part of the $1.1 trillion spending bill passed and signed into law by President Obama last December.

Taking opioids for pain does not automatically turn you into an addict, any more than eating M&Ms turns you into chocolate.

Chronic illness may be invisible, but the chronically ill can no longer afford to be. That’s why #PatientsNotAddicts is important. Words are powerful and repetition can be a tool for the truth as well as for lies.

Using this hashtag can help remind everyone that pain patients are ordinary people. They are your loved ones, friends, neighbors and co-workers. What they want more than anything (except for a cure, of course) is to recapture just a small piece of the life they had before their illness took hold, before the never-ending pain of their condition destroyed the lives they had built for themselves -- lives that included careers, birthday parties, graduations, playing with their kids and being intimate with their spouses or significant others.

For hundreds of millions of people, opioids help them do just that. To deprive them of that small ray of hope in the name of “protecting them” is nothing short of inhumane.  I believe we are better than that, America. Prove me right.

Ken McKim is an advocate for anyone with a chronic illness, and has made more than 43 videos on topics such as Crohn’s disease, lupus, depression, Ehlers-Danlos Syndrome, Complex Regional Pain Syndrome and much more. You can see his videos at Don’t Punish Pain and on his YouTube channel.

Ken began advocating for pain patients when his wife was diagnosed with Crohn’s – and he came to realize that the chronically ill were often stigmatized by society. That realization led him to make a 32-minute video called "The Slow Death of Compassion for the Chronically Ill."

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.