the very weird internet cult you've never heard of

The best and worst thing simultaneously about the internet is that everyone can have a say and anyone can build a platform, whether you're a makeup artist or a cake decorator or a doctor you have the ability to share your innermost thoughts and ideas with the world in a way that would have been impossible a mere 10 years ago. Whether you're sharing your creativity and making people laugh on youtube, using TikTok to catch a killer, or just Instagramming your lunch, you're part of the world’s largest and most connected communities and that’s a beautiful thing.

Unfortunately with that beauty comes the opportunity for people who really shouldn't have a platform having one, and allows misinformation to spread like wildfire, this is something we all know about the internet and have to expect…. But what happens when the person spreading the misinformation has the best of intentions, intentions inspired by the death of her friend, and truly believes what she’s doing is right?

That’s exactly what’s going on with "Fiona's law" a petition set to go to parliament by March 7th of 2021, with a goal of 10,000 signatures demanding that cervical screening be offered to women yearly rather than the current recommendation of once every 3 to 5 years for women and people who have cervixes from age 25 to 65.

Melanie Ford decided to create the petition after her friend Fiona lost her life to cervical cancer that Melanie believes would have been caught if only cervical screening was done every year, it’s unclear why she believes this or if she thinks there is any evidence substantiating it, but there's a few glaring errors in her judgment.

For starters calling the campaign Fiona’s law makes it seem like there is currently a law against yearly cervical screening in the UK, which there is not and has never been. There are no real laws surrounding cervical screening, there are however recommendations made by experts about when and how often cervical is most beneficial to the most people. Recommendations made for the safety and well being of all parties involved, recommendations that Melanie is demanding to be ignored.

“Cervical screening needs to be every year” reads the description of the petition." We need yearly checks regardless of the statistics,” she states and goes on to claim that women are dying and that the cervical screening programme is essentially killing them.

Advocating for science to be ignored is never a good thing, especially when you are advocating for that because of a rare incident in which a life was lost to a largely treatable, rare, and slow-growing cancer.

There are around 3000 cases of cervical cancer documented each year in the UK, approximately 850 of those cases result in death, cervical cancer is classified as rare and considered to be one of the most treatable cancers.

Cervical screening is said to be able to prevent around 80% of cervical cancers, and according to Jo’s cervical cancer trust, but most reputable sources agree that yearly cervical screening is not advisable, and may even be dangerous because of the extremely high rate of false positives annual screening causes, combined with how slow-growing cervical cancer typically is, taking around 10 years to develop in most cases.

False positives are already an under-talked about risk of cervical screening, and most women don’t know that while the NHS claims screening saves around 5000 lives per year, it also results in approximately 27,000 unnecessary LEEP/LETZ procedures per year, an invasive procedure in which part of the cervix is cut off and sent pathology, and the wound left behind is severely burned to stop bleeding. Doctors claim the procedure is minimally invasive and causes no serious side effects, people who have actually had one don’t agree with that statement and some credible research suggests that LEEP can and does cause long term side effects such as chronic pain, nerve damage, sexual dysfunction and fertility problems, as well as PTSD for some individuals due to lack of pain relief.

Unfortunately, if we listened to our friend Melanie and implemented what her petition wants the number of LEEP procedures women are forced to endure would skyrocket. If the recommended 3 to 5-year interval for smear tests is causing as many as 27,000 unnecessary procedures can you imagine how many yearly screenings would cause?

One could argue it would be worth it to save lives, but sadly it really wouldn’t save very many more lives, and how often, when, and at what age people should consider screening is determined by a specific set of criteria that decides from a scientific standpoint when screening is most beneficial and causes the least harm. This is what evidence-based medicine looks like.

And while any death of any person is heartbreaking especially when it was avoidable, one person’s death cannot change the recommendation for millions of people, especially when the recommendation was recently evaluated and determined to still be the best scientific practice.

Unfortunately folks on the internet like to dispute cervical screening recommendations and Fiona’s law is far from the only petition of its kind.

Most notably and terrifyingly, the #CheckMeUp campaign ran by a woman named Dafina who was diagnosed with womb cancer at 35 and had to have a complete hysterectomy, her petition on change.org has almost reached its goal of 35,000 signatures despite the horrifying and blatant misinformation she spreads on the topic of pelvic exams.

Pelvic exams are not something that is done as routine screening in the UK, and for good reason, most countries including the USA and Canada have begun to reject the exam entirely and all reputable health organizations in the USA agree that the exam is an outdated and archaic ritual that has no evidence to support it. Despite Dafina’s claims of the benefits of pelvic exams and her garnering the support of several big organizations including Eve Appeal, the exam has proven to be an ineffective screening for almost all reproductive problems including cancer, endometriosis, fibroids, and tumors.

Dafina also believes that these yearly gynecological exams should start in adolescence, some of her supporters have said they believe that the exams should begin at as young as 13, others say 16. This was not ever recommended or backed up by science in any country let alone the UK and has a host of problems with it.

Supporters of Dafina’s were quick anger when I pointed out the flaws in her logic on Instagram and I was quickly blocked by the official CheckMeUp Instagram account. I attempted to reach out to Dafina to get comments for this piece on Instagram and through email but she never responded.

And there's more where that came from, some people are even actively calling for the age at which screening is started to be 16, like this petition from Nicole Mulholland, which had less than 200 signatures before it started gaining traction due to the poor journalism and misleading information spread by UK news outlet, the daily mirror, and this piece.

In her petitions description, Nicole defends her unscientific, ignorant, and dangerous position by saying "it should be 16 because that's when you're legally allowed to be sexually active" showing both extreme ignorance of the law and seemingly implying that if you have sex when you're under the age of 16 you'll go to prison because it's illegal? And displaying she knows absolutely nothing about cervical cancer or cervical screening and evidently didn't even take five minutes to Google what she's talking about. Because if she had she'd understand why the recommended age is 25 and why it's inadvisable and comes with so many risks for younger people.

Anyone regardless of how good their intentions may be, advocating to lower the age of cervical screening is ignorant and uneducated on the matter.

And the scary part is they don't want to be educated, they don't want to understand why they're wrong. Being right and getting signatures on a petition is more important to them than not hurting and endangering young people with their pure ignorance.

I've personally tried to have conversations with these individuals and educate them on the issues surrounding cervical screening, most became angry and belligerent, they attacked me, they attacked my character, my sexuality, my knowledge as a patient advocate. Some were willing to listen, most weren't.

Even Jo's Cervical Cancer Trust has advocated against lowering the age and actually responded to a few of the more dangerous and misinformative petitions out there. Despite lack of endorsement from what many consider the leading authority on cervical screening, the scaremongering and misinformation don’t stop and neither do the petitions. A few pop up every year, most never reach their signature goals, and the few that actually do are always ignored or outright rejected by officials, but the cult-like group of people decidedly against evidence-based medicine refuse to let logic and rationality prevail.

They spread their willful ignorance, dogpile anyone who disagrees with them, and argue their misguided points with overly emotional and unsupported arguments.

If you don't agree with them they are quick to attack with any ammunition they can find, they'll gladly attack your appearance, your intelligence, your credentials… even the kind of phone you use, or the type of car you drive.

They aren't above weaponizing classism, nationalism, sexism, even racism against anyone critical of their ideology.

Lower the age advocates went from a misguided but well-intentioned group of people rallying around a cause to a vindictive, hysterical hate mob, and that's the true danger of the internet, the double-edged sword that is everybody's ability to create a platform.

So next time you see a petition to lower the age of cervical screening, force 13-year-olds into invasive and unnecessary pelvic exams, or demand yearly exams for all don’t sign it, if you have the time and energy maybe try to educate some folks, but above all do good in the world with your platform… and maybe don’t accidentally start a cult that’s obsessed with other people’s vaginas...