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?

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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.

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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.

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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.

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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.