Illegal Online Pharmacies Still Advertise on Facebook

By Pat Anson, PNN Editor

At least two illegal online pharmacies are advertising on Facebook, offering to sell opioids and other controlled substances to people without a prescription and without visiting a doctor. The ads appear to be a direct violation of Facebook’s own policies and may be illegal.

“29 common medications, delivered fast and privately. No prescription required,” says one ad displaying an image of Adderall and Xanax tablets.

“Don’t leave your home, stay safe with us,” says another ad offering to sell Xanax. “Get our delivery services and we will have everything you need.”  

Of course, there’s nothing “safe” about the sale of medication – real or counterfeit -- by sketchy companies over the internet.

In addition to Adderall and Xanax, Canadian Online Pharmacy and BestPharm also offer home delivery of opioids, muscle relaxers, weight loss, anti-anxiety, and erectile dysfunction drugs – many of them brand name medications sold at inflated prices.  

I was surprised to see the ads in my Facebook feed. I’ve been covering pain management for over a decade and frequently interact with PNN readers over Facebook, so it’s likely the ads are using Facebook algorithms and user history to selectively target me and my readers – many of them chronically ill -- even though Facebook and its parent company Meta have strict policies about pharmaceutical advertising.

“Promoting prescription drugs is not allowed without prior written permission from Meta,” Facebook states on its website, directing advertisers to an online application form that requires they first be registered and certified by LegitScript. Facebook and other e-commerce platforms use LegitScript to make sure they’re doing business with reputable companies that can pay them for advertising.

However, unlike other internet companies, Facebook does not use LegitScript to proactively monitor and screen ads to make sure they don’t promote questionable products or engage in illicit activity.

If they did, they would quickly learn that LegitScript classifies Canadian Online Pharmacy as a “rogue” pharmacy that uses fraudulent or deceptive business practices.  

“LegitScript has reviewed this Internet pharmacy and determined that it does not meet LegitScript Internet pharmacy verification standards,” LegitScript states on a webpage that anyone can use to check the URLs of online pharmacies to see if they are legitimate.  

“Additionally, LegitScript has determined that this pharmacy website meets our definition of a Rogue Internet Pharmacy.”

BESTPHARM FACEBOOK AD

BestPharm isn’t even listed in LegitScript’s database, which means Facebook shouldn’t be running their ads, according to its own policies.

Facebook and Meta did not respond to requests from PNN for comment on this story.

“Facebook has a role to play in enforcing their advertising policy and, in this case, their policy is not meeting their own expectations,” says Libby Baney, senior advisor to the Alliance for Safe Online Pharmacies, a trade group that estimates there are 35,000 active online pharmacies worldwide, about 95% of them operating illegally or engaged in fraud.     

“A number of years ago, the social media platforms were admonished by the FDA to try to do more to prevent this type of advertising or content to consumers. And many, including Facebook, made commitments or pledges to government and public health officials to do more to screen their ads for this type of content,” Baney told PNN.

“I was quite surprised actually to see how blatant the advertisements were that you found and I don't have a real explanation for it, other than they’re falling through the cracks of the advertising policy standards that many of these companies, including Facebook, have in place.”

‘How Can This Be Legal?’

Fortunately, many Facebook users who saw the same ads I did questioned whether the pharmacies are legitimate. They showed their skepticism in the comment section of the ads.

“Xanax being promoted on Facebook? Profits must be low,” wrote one poster who saw an ad that featured a hand holding about 20 Xanax tablets.

“Wow, that’s enough to sedate an entire neighborhood. Way to make yourselves look legit, LOL!” said another poster.

“Your Prices are INSANE.......... cheaper to buy from the dude slinging drugs on the corner,” wrote another Facebook poster.

“How can this be legal?” asked another.

Remember, these ads are deliberately targeting people with chronic pain and other illnesses, who often have trouble getting their medications. There are currently record shortages of prescription drugs and many pharmacies are out of stock or rationing medications in short supply.

CANADIAN ONLINE PHARMACY FACEBOOK AD

In a recent PNN survey, 90% of patients with an opioid prescription said they had trouble getting it filled.

Desperate people do desperate things. We’ll never know many Facebook users clicked the button to “Learn more,” which takes them directly to the advertiser’s website where they can place an order for drugs.

“It could be a total scam, meaning your credit card and personal information are stolen. Or it could be a partial scam that could endanger your health, which is you get something dangerous laced with fentanyl,” says Baney. “You're putting your life in the hands of some anonymous advertiser on the internet.”

‘No Prescriptions Needed’ 

A close look at an online pharmacy’s website may provide a clue to their legitimacy. Canadian Online Pharmacy, for example, bills itself as an “international” pharmacy that ships medications around the world.

“Your Global Source for Quality Medicines! No prescriptions needed, no awkward doctor visits! Enjoy convenience, privacy, and savings on top-notch medications, all delivered to your doorstep,” the website claims.

Where is the Canadian Online Pharmacy based? The company lists an address in Wheeling, West Virginia that is shared with dozens of other online companies, selling everything from pillows and audio equipment to cameras and pizza. The telephone that’s listed has a Washington DC area code.

BestPharm doesn’t provide a physical address or telephone number, but does share the names and pictures of several people who supposedly run the company in its “About Us” section. Their names and images appear to be fictitious or stolen off the internet.

The picture for Chief Operating Officer Jessica Pearson, for example, is the same one used by over a dozen other women online, only their names are Emma, Emily and Ella.

Emma is particularly notable. Her Linkedin page claims she works for Google on special projects involving artificial intelligence, and that she’s a graduate of the Massachusetts Institute of Technology, where she studied “the toggled self-assembly of colloidal suspensions in binary systems.”

BESTPHARM

LINKEDIN

All of this might be funny, if it wasn’t for the fact that people are getting ripped off and risking their lives by buying drugs from fake pharmacies.

“I hear about these types of incidents or patient experiences from parents who've lost loved ones, who have purchased counterfeit products online after seeing ads that are clearly in violation of U.S. law,” Baney said.

According to The Wall Street Journal, Meta is under investigation by federal prosecutors for its role in the illicit sale of drugs online. A grand jury has been convened to look into whether the company’s social-media platforms are facilitating and profiting from illicit drug sales. No criminal charges have been filed.

“The sale of illicit drugs is against our policies and we work to find and remove this content from our services,” a spokesman for Meta said in a statement to the newspaper.

‘When Are You Going to Take Down These Posts?’

In 2018, Meta CEO Mark Zuckerberg was grilled during a congressional hearing about Facebook publishing posts and ads for illegal online pharmacies.

“Your platform is still being used to circumvent the law, and allow people to buy highly addictive drugs without a prescription,” said Rep. David McKinley (R-WV). “When are you going to take down these posts that are done with illegal, digital pharmacies?”

“Right now when people report the posts to us, we will take them down and have people review,” Zuckerberg replied. “I agree that this is a terrible issue, and respectfully, when there are tens of billion pieces of content that are shared every day, even 20,000 people reviewing it can’t look at everything.” 

Six years have passed and illegal online pharmacies are still advertising on Facebook. The company heavily relies on artificial intelligence (AI) to screen the millions of advertisements it runs every year.

But clever advertisers find ways to outsmart AI. There’s even a tutorial on YouTube to help cannabis companies get around Facebook restrictions on cannabis advertising. The key is to avoid using certain keywords like “THC” or getting “high,” which could get an ad rejected by AI. It’s better to use emojis, images and vague terms to get your point across.

“The goal is not to try to break the rules, but to see where you can bend the rules. Be a little bit creative,” says Aaron Nosbisch, CEO and Founder of Brez, a cannabis-infused drink.

“My ads are saying you’ll experience euphoria, feelings of relief, and be a great alternative to alcohol. Promote the ideas of what the products do for people (without mentioning) THC and CBD. People are looking to feel good. People are looking to have a good night and have a good time. Sell that.”

What can Facebook do to stop advertisers from exploiting cracks in its screening system?

“Enforce their own policy,” says Baney. “We look forward to Facebook addressing these issues that they've committed to in public forums with government officials.”

A Grumpy Old Lady in Pain

By Rochelle Odell, PNN Contributor

As I lay once again, in pain, waiting for my small dose of pain meds to kick in, I stare at the dark ceiling, asking, begging God to please help me. There is nothing but silence around me except for the low volume of my TV.

I find my patience, what little I had, is now gone. I find myself writing a post on Facebook that perhaps did not have to be as blunt as it was or as challenging -- as even I recognized it to be. 

Am I judging others in this battle? Has my nearly 28-year battle with CRPS and it's incessant, never ending pain turned me into someone I am not thrilled about? Am I judging good people, in pain like me, too harshly at times?

I find some online comments are made with little thought or logic by others. I know and tell people there is only one person or deity that can judge anyone and that's the man upstairs, God. And in all honesty, I don't have the right to criticize anyone for what they say or do, except for liberals. Okay, cardinal rule, don't bring politics into our battle for pain relief. I am sorry.

Why do those who obviously haven't read an article or post refuse to admit that their response makes no sense? I spend a lot of time reading articles, but many don't and I feel if you can't find the time to read, don't comment. There are times I may read a post that really galls me and I respond critically, then I think of those I may have upset.

Why did I do or say what I did? I guess because like all in pain, I am tired. Tired of hurting, tired of fighting to get pain management back to where it should be for all. Especially tired of the few wannabes who think it's cool to be part of the pain community -- a community we would all give anything not to be a part of.

The very few I do challenge proudly boast of the ever-growing list of ailments that they wear as a badge of honor. They proudly state no doctor will agree or diagnose them with any of the pain diseases that they have self-diagnosed. You know the type. They have gone down the list of symptoms, convinced they surely must have it.

For shame. They honestly believe they have been wronged. Those people bother me, because there are many who suffer unrelenting pain from diseases physicians have actually diagnosed. I have been diagnosed with several and I want no part of them. I do try to stick with the CRPS only. It was the first and worst of what ails me.

ROCHELLE ODELL

Adding more or reading off what I call our laundry list of ailments won't change my low dose of opioid pain medication. My pain management PA is very sweet and compassionate, but we all know that high doses of opioids are nothing but a memory. A memory of when we used to function. I want my life back without pain and without needing medication. We all want our lives back... period!

I have my life friends who I’ve known since childhood, and new friends I’ve met in the pain community. Like my family, they mean the world to me. Each person brings something I may need or I bring something to them that they need. Pain brought us together. And if it weren't for pain, our paths would never have crossed.

My life has spanned seven decades, sometimes flying by and other times dragging by ever so slowly. The adventures I had, the experiences, I wouldn't trade for anything. I am thankful to have experienced what I did. Too many pain patients don't, especially younger ones. All they know is pain. They can only dream of traveling the world like I did. Those of us who had a life before pain were able to experience places, people and things. The memories are bittersweet.

I suppose at 73 that I am old, very opinionated and faced with the reality God can come knocking on my door anytime. Although for some reason the age of 93 is set in my mind when he will take me. Can't imagine living in this pain for twenty more years.

I have learned in this pain journey that I don't have to win every argument. I don't have to win every point. That if I ignore an annoying Facebook post and simply log off, I don't develop a killer stress headache trying to prove I was right. Being right all the time makes for a probably obnoxious person. I don't want to be that way, I really don't, but it is my reality, my life, me.

When thinking of love, I have loved and have been in love. Do I want to be married again? Odds are no. Like most, I don't want to live my golden years alone but I have become so set in my ways, set in my routine, set in how I choose to live any day my way. If I want to wear my jammies all day and not comb my hair, I can. If another person was around, I would have expectations placed on me I may not want.

But I also get so tired of battling pain with no real source of help I can depend on. I have only me to depend on. I am not the only one alone and we do hurt the most.

If my pain is severe and I want to cry, I can, with no explanations. Although if I do cry my little sidekick Maggie, an 8-year-old dachshund, gets right next to my face crying with me. Don't have any humans that sit next to me and cry with me, although I know of some sweet pain friends who would if I asked. Little Maggie has been so vocal. I look at her and ask do I really sound that bad, that pathetic? Yes!

I don't want to come across as judgmental or too critical. I don't want to be the mean old lady in the neighborhood. But you know what? Living in pain, alone for close to 28 years, well, if the shoe fits...

If my comments come across as mean, try to remember pain has changed us all. I see that in the pain community. 'A' can't stand 'B' and 'B' is thoroughly disgusted with 'C.' Meanwhile, 'D' shakes their head asking why? Why do we say and act in ways that may not be nice?

Guess I will set the timer on my TV, pray to God one more time to please take my pain away, and close my eyes hoping sleep comes, if even for a couple of hours. And pray those around me understand why this grumpy old woman says what she does.

Rochelle Odell lives in California.

PNN invites other readers to share their stories with us. Send them to editor@painnewsnetwork.org.

Feds Target Online Pharmacies

By Pat Anson, PNN Editor

The FDA and DEA have sent warning letters to four online networks for illegally marketing unapproved and misbranded versions of opioid pain medication. The letters are the latest step in what appears to be an expanding federal and private crackdown on online pharmacies and websites that offer alternative health products and information.

The four online networks, which operate at least 10 websites, are Divyata, Euphoria Healthcare, JCM Dropship and Meds4U. The letters warn the companies to immediately stop selling illegal opioids to consumers.

“We cannot allow rogue online pharmacies to continue to fuel the crisis by illegally offering opioids for sale and circumventing the important safeguards that have been put in place for opioids to help protect the public health,” said acting FDA Commissioner Ned Sharpless, MD.

The FDA has issued letters of this type before, but this is the first time the agency has jointly issued warning letters with the DEA. The companies were given 15 days to respond.

“You knowingly or intentionally use the Internet to advertise the sale of controlled substances by directing prospective buyers to Internet sellers of controlled substances who do not possess a valid modified DEA registration,” one letter warns.

“Therefore, your websites are operating in violation of United States law, which may be enforced through criminal penalties and civil enforcement.”

The letter to Divyata alleges the company sells the opioid painkiller tramadol as an “agony reliever that ties with receptors of the mind and sensory system to diminish dimensions of torment.”

Euphoria Healthcare was warned for selling the opioid tapentadol under the name “Aspadol Tab” and claiming it is used “to treat moderate to severe pain that occurs for shorter to longer periods of time.” The FDA has never approved a drug called “Aspadol Tab.”

As PNN has reported, the FDA has previously cracked down on rogue online pharmacies selling counterfeit drugs or illegal medication. Often the websites reappear under new names or move offshore. As many as 35,000 online pharmacies operate worldwide. The vast majority are not in compliance with U.S. laws and many do not require a prescription, according to the Alliance for Safe Online Pharmacies.

The federal crackdown is not limited to opioids or prescription drugs. This month the Federal Trade Commission warned three companies selling CBD oils, tinctures, edibles and other products to stop making claims that CBD can be used to treat pain and other chronic illnesses.

Google Warns Online Publishers

Internet companies have also taken steps to reduce the flow of online traffic and advertising revenue to websites that offer alternative health information and products.

Today Google informed thousands of online publishers enrolled in its AdSense advertising partnership that it would restrict advertising on websites that promote or have content about recreational drugs, unapproved pharmaceuticals or supplements. The policy not only applies to illegal drugs such as heroin and cocaine, but includes several alternative treatments for pain, such as marijuana, CBD, kratom and other herbal supplements.

In effect, Google is telling online publishers their advertising revenue will be reduced or stopped if they provide information that Google considers inappropriate.

“Publisher restrictions identify content that is restricted from receiving certain sources of advertising. By content, we mean anything present on your page or app - including other advertisements and links to other sites or apps,” Google explained in a note to publishers.

“If your content is labeled with an inventory restriction, fewer advertising sources will be eligible to bid on it. In some cases this will mean that no advertising sources are bidding on your inventory and no ads will appear on your content.”

Pain News Network is a Google AdSense partner. We frequently publish content about kratom, CBD and other alternative pain treatments. It is unclear how Google’s advertising policy will affect PNN.

In addition to restrictions on advertising, recent changes to Google’s search engine algorithms have suppressed search results for hundreds of websites that offer alternative health information or products. As a result, many of these websites have already experienced a substantial drop in revenue and readers.

Facebook, Pinterest, Tumblr and other online social networks have also recently suspended or deleted dozens of alternative health pages for containing what Facebook considers “false, misleading, fraudulent, or deceptive claims or content.”

Pinterest said it relies on governmental bodies to decide what is appropriate. “We rely on information from nationally and internationally recognized institutions, including the CDC and WHO, to help us determine if content violates these guidelines,” Pinterest explained in an email to a website that was banned.

PNN’s account with Pinterest was suspended without warning in June for violating the company’s “spam policies.”  Our account was reactivated a week later with an apology.

“Sorry that your account was suspended. Occasionally good accounts get caught in the mix when we're looking for spammy accounts,” Pinterest said in an email.

Online Censorship of Health Information Is Authoritarianism

By A. Rahman Ford, PNN columnist

Critics of stem cell therapy have taken their censorship campaign to another frightening and paternalistic step up the authoritarian ladder. Not only does it threaten freedom of speech, freedom of association and freedom of health, but now it’s targeting poor people.

The campaign to stop people from accessing stem cell therapy (SCT) has been building for some time. First there was fearmongering to scare patients away from SCT, followed by a push to have regulatory agencies increase enforcement.  Then came a call for social media platforms like YouTube to censor patient testimonials about the benefits of SCT.

Now, in a disturbing turn, critics are pressuring fundraising platforms like GoFundMe to purge campaigns that seek to raise funds for SCT.

In a recent op/ed in the BBC’s Future, London-based neurologist Dr. Jules Montague argues that crowdfunding sites like GoFundMe need to crackdown on patients seeking to raise money for stem cell treatments. Montague says their testimonials omit the “unfounded hype” and potential risks associated with SCT. These “bad actors,” according to Montague, should be banned to “halt the spread of misinformation.”

To propose that crowdfunding sites be tasked with choosing winners and losers in the marketplace of ideas, and to impose quasi-criminal sanctions on poor patients is to enter a decidedly dictatorial dimension. “Bad actor” is a legal term of art, and should be left to the jurisdiction of a court of law or other legislatively-authorized tribunal. That’s how things work in a democracy.

On the other hand, authoritarian regimes censor whatever speech they see fit, arbitrarily and without explanation. As it pertains to crowdfunding sites, what we absolutely do not need is unelected and unappointed “experts’” selling misplaced fears.

The question that should be asked is why do the SCT critics fear the agency of the people? Is the notion that people can make their own medical decisions – and accept the risks of those decisions – without “expert” stewardship, consultation or approval such a terrifying prospect?

Ultimately, this “purge and censor” line of argument represents a slippery slope that is distinctly anti-democratic. And at the bottom of the slope, are piled the bodies of the sick, whose desperation is fueled by the abject failures of mainstream medicine.

Equally disturbing is the fact that stem cell censorship on fundraising platforms would be a clear and unmistakable attack on the poor. Poor people are the ones who need to raise money, not the wealthy. The average person doesn’t have the finances of a star athlete like Max Scherzer or a celebrity actress like Selma Blair to get stem cell treatment. Instead, they have to rely on the generosity of others, a generosity that crowdfunding sites facilitate. To censor SCT fundraising is to not only censor a voice, but a livelihood, and maybe even a life itself. Poor people should not be punished for being poor.

Does Dr. Montague really expect GoFundMe and other sites to establish their own internal ethics boards and become the online sentinels of poor people’s health? There is no defensible or rational justification for preventing chronically ill poor people from raising the money they need to save their own lives.

Online Censorship Increasing

Unfortunately, online censorship of alternative health information is not new. In fact, it’s increasing. Facebook recently deleted dozens of alternative health pages without any notice or explanation. Some, such as Natural Cures Not Medicine and Just Natural Medicine, had millions of followers.

GreenMedInfo was kicked off Pinterest for violating its “misinformation policy” which bans “false cures” for chronic illnesses. And who helps Pinterest determine what health advice is false?

“We rely on information from nationally and internationally recognized institutions, including the CDC and WHO, to help us determine if content violates these guidelines,” Pinterest explained in an email.

Recent changes to Google’s Broad Core Algorithms have also suppressed search results for alternative medical information. As a consequence, hundreds of health websites have experienced drastic drops in traffic, including Pain News Network. One website, owned by alternative health advocate Dr. Joseph Mercola, lost about 99% of its traffic.

“Big Tech has joined the movement, bringing in a global concentration of wealth to eliminate competition and critical voices,” Mercola warned. “This year, we’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

“We’ve seen an unprecedented push to implement censorship across all online platforms, making it increasingly difficult to obtain and share crucial information about health topics.”

— Dr. Joseph Mercola

Even Wikipedia, which relies on open source editing for its content, has succumbed to the “deletionism” of alternative health information.

“We believe that organised skeptic groups are actively targeting Wikipedia articles that promote natural, non-drug therapies with which they disagree,” says the Alliance for Natural Health. “The new trick of these editors is to rewrite or entirely remove pertinent information from such articles or, worse still, delete entire articles altogether.”

It now appears that stem cell therapy is the next hooded subject to be escorted into the Star Chamber of deletionism. The call for fundraising censorship is distinctly ant-human, and denies the most essential and primordial of human instincts – to assist a fellow human being in their time of need.

It is not the place of GoFundMe or any other fundraising site to police people’s medical choices. GoFundMe, your core principles are turning “compassion into action” and the sharing of people’s stories “far and wide.” Please do not capitulate to the SCT bullies.

A. Rahman Ford, PhD, is a lawyer and research professional. He is a graduate of Rutgers University and the Howard University School of Law, where he served as Editor-in-Chief of the Howard Law Journal. He earned his PhD at the University of Pennsylvania.

Rahman lives with chronic inflammation in his digestive tract and is unable to eat solid food. He has received stem cell treatment in China. 

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.

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.

Why I Keep Writing About Myself Online

By Crystal Lindell, Columnist

The other month I was chatting with this guy on Tinder. To protect the guilty, we’ll just call him Jerk I Should Have Swiped Left On — or Jerk for short.

All he knew about me was my first name, that I hate the Green Bay Packers, and that I write for a candy magazine. But it was all he needed.

Jerk: Hey. Sorry I took a minute to text back. I was just reading about a hurricane.

Me: What? There’s a hurricane? WHERE? OMG?

Jerk: No, I found your column.

He was talking about this column:  “Surviving the Hurricane of Chronic Pain.”    

You know, the one where I share all the intimate details of being in chronic pain for the last three years. 

Where I allude to things like suicidal thoughts with lines like: “I spent almost six months on the verge of drowning. And eventually I just got so tired that I wanted nothing more than to close my eyes, fall back into the water, and let it all go.”

And I talk about how many drugs I take. And how I live with my mom. And how I only barely survived the last few years.  

I had never even met this man and yet he was already getting a glimpse into incredibly personal parts of my life story.  It kind of made me mad, if I’m being honest. I mean, yes, I put it all out there. But I wasn’t expecting Jerk to go looking for it all so quickly. 

I was a writer long before I woke up with rib pain in February 2013. And since then, I’ve turned to the written word to try and make sense of it all. I always say: Writing is just a part of my soul, and when I go through things, I can’t not write about it. 

Of course, choosing to share those writings with the world is another thing altogether. And it’s a choice I make with great care. 

I try to be raw, visceral and real, but at the same time there are actually some things that are off limits. There are some pieces of my writing that only my best friend has ever read because I decided they were just a bit too personal for the internet. 

But even with that filter, there’s a lot about me out there for all the world to read. And all of it includes my real name. 

Anyone with three minutes and Google can find out about my long-term health problems, my opioid use, and my struggles with suicidal thoughts. And while it kind of sucks when a Tinder guy I think I might like finds all that stuff, it’s probably worse when people I know professionally see all of that as well. 

But then, I get the emails. And the private Facebook messages. And the comments. And I remember why I keep putting everything out there. 

I get emails that say things like:

“[Chronic pain] is a tough thing to live with for sure and I've felt so much of what you've written. It’s nice to know it's not just me to be honest.”

And private Facebook messages like:

“I've not openly shared my story like this before, just beginning to live a more transparent life, sharing and caring with others. You inspire me, by being so open with your story and the writing. Soon I will be working on my YouTube channel doing just this, sharing my testimony and journey in hopes to share connect helping one another. Peace.”

And Cat, who runs an intercostal neuralgia support group on Facebook, links to my column about my Painniversary, with comments like:

“So, I've never actually met someone with my condition face to face. But this is my friend Crystal who lives in USA, and has intercostal neuralgia like me. She is a writer and this is her pain blog. We 'met' through the support page I started 4 years ago.

My Painniversary is the 1st of October 2010. My pain hasn't improved. It's changed a bit though. I don't feel like I'm being stabbed as often, and I don't get the ‘needle of icicles’ down my nipple so much either, but the 24/7 relentlessness is always there. Weird to say, but it's comforting to know there are others like me who get what I'm going through.

Pain cannot be explained only experienced, but I totally get what Crystal is saying. I understand x.”

I read all this and it stops me in tracks.

I’ll be at my sister’s basketball game or waiting for a Tinder date to show up, and I’ll get a little notification or I’ll see a comment and I’ll just stop. I promise you, I read every single comment, every single email, every single Facebook message. And every single one of them touches my heart in a way that I can’t even explain. And I have to say, thank you to every single person who has ever taken the time to read my work, and then felt compelled to comment. Seriously. Thank you.

So yes, it actually really is annoying and frustrating when Jerk on Tinder finds out way too much about me before we even share a glass of wine together. But I’m going to keep putting myself out there, sharing way too much information about my life.

Because if I literally only help one person know that they aren’t alone and they aren’t crazy, then it’s more than worth it. Even if it means that ultimately, things don’t work out with Jerk from Tinder.

Crystal Lindell is a journalist who lives in Illinois. She loves Taco Bell, watching "Burn Notice" episodes on Netflix and Snicker's Bites. She has had intercostal neuralgia since February 2013.

Crystal writes about it on her blog, “The Only Certainty is Bad Grammar.”

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.

Facebook Pain Groups Attacked by Spammers

By Pat Anson, Editor

The websites all have innocent sounding names, like Personal Medical Treatments, Personal Health, and Health Care Solutions Plus.

Their articles also sound interesting, with titles like “7 Ways to Relieve Fibromyalgia Pain” and “Alternatives Treatments: The Rx for Chronic Pain is Changing.”

But when you dig a little deeper things don’t add up. The websites have no advertising, so how are they funded? Why do they all seem to be based in Pakistan or Panama?  Did “Zafar Iqbal” really write that article about alternative pain treatments in Duluth, Minnesota?

And why are all of their articles apparently stolen from other websites – a clear violation of copyright laws?

Those are some of the questions being asked by administrators and members of chronic pain support groups on Facebook, who have been deluged with thousands of links to these bogus websites for the last few months.

The links are usually posted by new group members who only recently joined Facebook and have very little information in their profiles. As fast as the bogus links and the suspicious posters are deleted, they return under new names with new links to articles such as the following:

"To a Friend With a Chronic Illness Who’s Feeling Hopeless" was apparently stolen from The Mighty.com. 

“How Painkillers Make Headaches and Chronic Pain Worse Over Time" was taken from TheHeartySoul.com.

“In the Shadow of an Opioid Crisis, Super Bowl Ad Spotlights Chronic Pain Patients” (allegedly written by the mysterious Zafar Iqbal) was copied and pasted from StatNews (the real author is Rebecca Robbins).

Pain News Network has been victimized in this scam too. Columnist Ellen Lenox Smith emailed me this week asking why her column “8 Tips for Patients Newly Diagnosed with Ehlers-Danlos” reappeared without permission in CaringCare.Info.

“Is this appropriate?” Ellen wanted to know.

No Ellen, it is not. It’s fraud and copyright theft.

The problem has become so acute that the administrators of a large Facebook support group recently closed it to new members.

“Due to an attack by plagiaristic & duplicate posters we are putting a temporary moratorium on new members,” wrote Barbara Mills, who made the move reluctantly because she knows many pain sufferers are looking for friendship and support in Facebook groups such as hers.

Barbara told me in the recent past she was offered money to post the links herself, but declined.

More is at stake here than plagiarism, copyright laws and unhappy editors like me who hate seeing their articles stolen. I think the ultimate goal of these con artists is to hack into our computers and smartphones. Click on one of their links, and you could pick up an unwanted cookie, computer virus, or even a “keylogger” that can be used to record your internet activity, usernames and passwords.

People who sign up for their newsletters by providing their email address are also putting themselves at risk, not just for a deluge of spam, but for malicious programs such as a "trojan horse" they could download without even knowing it.

If you’re a Facebook member and you see these suspicious posts, what should you do?

• If you’re not familiar with the website, don’t share or “like” it. That only spreads the post like a virus to your friends and other groups. It’s also precisely what the spammers want you to do.

• If you see someone constantly sharing links to bogus websites, check the poster’s profile. If they have only a few photos, no friends and just recently joined Facebook, chances are they are fake.

• If you’re an administrator and you see these bogus posts appearing in your closed Facebook group, you may have to start deleting offenders and close your group to new members until the problem stops.

• Report suspicious posts and posters to Facebook by clicking here.

• Keep your anti-virus software up-to-date and your firewall on.

If you’re feeling really adventurous, you can visit HypeStat, which I use to see how legit a website is.  Enter the website’s URL, click search and scroll down the page. You’ll see what country a website is registered in and how long they’ve been around. 

You might even run into the prolific Zafar Iqbal, who has apparently abandoned Duluth and is now writing articles about British Airways crews making peanut allergy announcements and how cannabis kills 30,000 people a year.  

Facebook has been a godsend for pain sufferers around the world seeking support, friendship, and solutions to their chronic pain issues. It’s a shame that others are taking advantage of the pain community -- which is already under attack in so many ways, not just online.