Spreading like a disease: Sick kids, desperate parents and bad science

Inside a Facebook group where anti-vax propaganda is promoted as info for "informed consent".

 

 

Not long after my son was born, dry patches of irritated skin began to appear on his face. I lathered the little guy up with all types of oils and creams but nothing worked so, like most parents, I turned to the internet.

After asking a question about eczema on Facebook, I was sent a link to a closed group called The Healing Tribe: Resolve Allergies, Eczema + More... Naturally.

There are over 11,900 members from all over the world in The Healing Tribe and it grows a little bigger each week. The “about” section describes it as a “supportive online community” for conversations on allergies, eczema, immunity and holistic health.

I texted a friend who was already a member. “Just be aware, it’s pretty intense. I find it full on and I’m pretty health conscious!” she wrote back.

I could see why The Healing Tribe was popular; it’s thousands of people who take the time to share their thoughts about health, illness and remedies. It’s a highly active network, a modern version of the “village” it takes to raise a child.

The group is predominantly used by mums who, like me, are crowdsourcing for help with their children’s health. Many have kids suffering badly from eczema and allergies.

After a few days in the group I began to feel unsettled; a parent posting pictures of her child, with what looked like seriously infected skin, was discouraged from seeing doctors. In other posts, parents were warned off using antibiotics or any “unnatural” medicines. Vaccines were blamed for injuries and illnesses.

And it seemed to all be closely watched over by the group's creator, Maryana Lishman.

Lishman calls herself a “holistic health coach” and regularly promotes her $135 Skype consultations. She also makes sure she’s not liable for any harm caused by her advice. Her only relevant qualification appears to be a certificate she did online in under a year. 

LEADING THE TRIBE

Lishman is a Mangawhai-based mum who says since resolving her daughter’s eczema and food intolerances she wants to help others do the same. She also runs the Raised on Real Food Facebook page and website. 

“My daughter was once diagnosed with multiple food allergies, eczema and Failure to Thrive. On that journey, I saw a need for a space which allowed people the opportunity to discuss their positive experiences with holistic health without undue prejudice,” she says.

All activity in the group is closely moderated by Lishman and if parents suggest remedies outside of the group's natural philosophy or advertising guidelines, she’s known to step in and delete comments.  

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Last month she announced she would be making changes to the group after a member called her “cold-hearted” and another made a “sarcastic comment”.

“[It was] a total slap in the face given how much free and bountiful support both these particular members have had from myself,” she wrote.

Now every post in The Healing Tribe has to be approved by Lishman prior to appearing on the page, meaning parents who joined to get help from the community have to go through her first.

An ex-member, who wishes to remain anonymous*, says the group felt almost “cult-like”.

“I noticed that there was strict control over the content by Maryana … It was not a place where you could safely hold views that contradicted hers. Anyone who directly contradicted her was ostracised. Plenty of people left the group.”

Kaye, a current member who wants to be known by her first name, says she became concerned when Lishman allowed dubious health advice to go unchallenged, including recipes for homemade baby formula.

“These recipes contained dangerously high levels of Vitamin A, though Maryana participated in these threads making comments about the limited knowledge of GPs and dietitians.”

“I noticed regular discussions promoting the concept that natural equals safer or better, as well as promoting a level of distrust in conventional medical advice,” says Kaye.

All the members I spoke to identified two things they were most concerned about; Lishman's health coaching and her anti-vaccination posts.

PLANTING SEEDS OF VACCINATION DOUBT

Vaccinations are generally considered one of the greatest public health achievements in human history. Globally, they have dramatically reduced death and disability caused by infectious diseases, and continue to do so. But unfounded fears about vaccine safety are still widely shared.

Dr Helen Petousis-Harris, Director of Research at the Immunisation Advisory Centre, says she feels there is a “growing prevalence” of anti-vax groups on Facebook.

“Anyone can set up a group and post what they like, but before the internet, it wasn’t that easy and before social media, there were far fewer organised groups … and they had a much shorter reach.”

Dr Petousis-Harris says the damage caused by anti-vax content in groups like The Healing Tribe can’t necessarily be undone.

“If you go and try and correct the misinformation, for some people they will become more entrenched and ingrained in their position so you actually just make it worse”.

Lishman believes that her daughter’s eczema was made worse by vaccinations. In a post from 2015, she wrote “it was her adverse reaction to her second delayed shots that got us into A&E with an eczema flare ... if I'd listened to my gut I'd never have done them at all.”

According to New Zealand's Immunisation Advisory Centre (IMAC), the overwhelming majority of studies show there is no association between vaccinations and allergies or eczema.

IMAC says there will always be a few publications that report a link, but the claims are usually based on badly designed investigations or blatant manipulation of data.

A study in Germany looked at the health outcomes for over 44,000 children and found no evidence that vaccinations in the first year of life increased the risk of diseases like eczema, hayfever, and asthma.

But Lishman is skeptical of studies and research. She sometimes uses the word “science” in quote marks and tells her followers to look into the “mythology” and “propaganda” around immunisations.

The anti-vaccination content Lishman has shared includes articles titled “I will never vaccinate my child” and “Dear parents, you are being lied to”.

She has also promoted events run by authors of anti-vax books, shared a meme from a Facebook group called Rage Against Vaccines, and recommended lists of anti-vaccination pages and resources.

Last year she told parents that vaccines “don’t provide safety” and when one mother asked if she should delay vaccinations, Lishman told her it was best not to do them at all.

“It’s rather difficult to marry up the idea of vaccinating while ignoring the adverse effects they have on children and their developing immune systems. So while delaying it is probably better ... it’s still not better than not doing it at all IMO,” she wrote.

Most recently, she posted an image which said that unvaccinated children were significantly healthier than vaccinated ones.

And it’s not just Lishman; it’s her appointed moderators too. One told a mother of a 15-month-old that “... vaccines are total shit. They don’t work, they are full of health and immune destroying chemicals”.  Another moderator said vaccines contain aborted fetuses.

Lishman says since The Healing Tribe is a “natural” health group her stance on vaccinations shouldn’t come as a surprise.

But Dr Petousis-Harris says the concept of naturalness is misunderstood.

“We’ve seen research that revealed how people perceive vaccines, that they’re some kind of toxic chemical onslaught when of course they’re absolutely not. There are far more chemicals in a cup of tea than a vaccine.”

“They don’t understand that themselves, their children, and along with everything else in the world are made up of chemicals.”

Lishman says she’s not anti-vax, rather she is pro-informed consent.

“Informed consent is the process of exchanging information so that consumers can make an informed decision about their options, including the option of refusal. I agree we should look at all aspects of a topic to be able to make an informed choice,” she says.

HOW ANTI-VAXXERS SPREAD DISEASE

Over the past few years, there have been several measles outbreaks in New Zealand arising from non-immune people bringing the virus to the country. Dr Richard Hoskins, Public Health Medicine Specialist and Clinical Director Waikato Population Health Service, says the anti-vax movement has a part to play in the spread of the disease.

“We’ve had three in the Waikato, two as part of outbreaks that started in Auckland and the last one which started in our region.”

In 2014, 124 people were infected with measles in the Waikato. Out of all the recorded cases, only four people had been vaccinated. 

“People choosing not to have their children immunised, plus people that the systems are not effective enough to ensure they get immunised, contribute to immunity rates low enough to allow the infection to spread.”

He says people who think measles is nothing to worry about are “wrong”.

“For a significant number [of people] there are complications. In New Zealand, about one in five people with measles spend some time in hospital … and I’m old enough to remember seeing children profoundly disabled and dying of a measles complication when I was a medical student.”

Two doses of the MMR (measles, mumps, and rubella) vaccine is 97 percent effective in preventing measles, which can cause pneumonia, brain swelling, deafness and, in rare instances, death.

Our vaccination rates are not high enough to ensure we don’t have outbreaks of the disease since that requires at least 95 percent of the population to be immunised.

According to IMAC, as of the end of September 2017, 93 percent of two-year-olds were fully immunised, 0.6 percent did not have their vaccinations recorded and 4.2 percent were recorded as declines.

The rate of vaccinations drop by the time children reach five-years-old; 89 percent were fully immunised in September of this year.

Regions with the lowest rates of immunised 5-year-olds include Northland (81.6 percent), Bay of Plenty (82.2 percent), Waitemata (85.4 percent) and Auckland (85.7 percent).

Northland doctor Lance O'Sullivan says the rise of anti-vaccination sentiment has caused a five percent reduction in children in the area being vaccinated.

"I do suspect that these groups - these harmful groups - that are out there promoting these falsehoods are a part of that, he told Checkpoint With John Campbell.

"I've literally cradled the body of a child doing its very best to die. We are trying to save a child's life, we put it on a helicopter, it flies to Starship Hospital. The kidneys are failing, its heart's failing, its lungs are failing. All because we didn't put a bloody $7.50 meningococcal vaccine into that child's thigh."

Dr Petousis-Harris says while overall New Zealand has relatively high rates of vaccinations, we cannot become complacent.

“We’ve done brilliantly well for being at bottom of the OECD and being an absolute national embarrassment to having achieved remarkable coverage. But we mustn’t sit back on our laurels.”

“One of the important things is to maintain people’s confidence in the [immunisation] programme. Not everybody is confident so if you introduce scaremongering and misinformation, it’s easy to perturb the whole thing.”

There are already examples of it happening overseas. The Somali community in Minnesota USA experienced the worst measles outbreak in decades after anti-vaccine groups told families that vaccines cause autism. The MMR vaccine rates plummeted from 92 percent to 42 percent.

Dr Petousis-Harris says one thing people can do to protect themselves from vaccine misinformation is by being aware of the “sound shell” they can find themselves in on social media.

“If we’re educated on how these engines work, we would be more mindful of the information we’re being feed.

“Fake news is really the order of the day and just a little bit of education, and having a bit of a ‘baloney identification kit’, I think would take us a long way.”

THE ANTI-VAX EFFECT ON THE TRIBE

Research from 2013 suggests that the variable most predictive of parents’ vaccination decision is the percentage of people around them who recommended not vaccinating.

Dr Petousis-Harris says anti-vax messages in Facebook groups like The Healing Tribe have the potential to persuade parents.

“We know for sure that it can change people’s intent to vaccinate. It’s been demonstrated all over the world in different places at different times. [There are] a lot of challenges on social media related to this. It’s a really important phenomenon that we have to be mindful of.”

Lishman’s anti-vax content seems to be having an effect. After she wrote a long post explaining why she doesn’t vaccinate her daughter, one mother thanked her, saying “this post couldn’t have been better timed for me.”

Last year, a mum whose son has a heart condition explained why she was pro-vaccination but was quickly convinced by members that her son’s medical issues were due to the vaccines.

“I feel quite sick now that my descion [sic] to vaccinate could have caused some of his medical conditions,” said the mum.

Last week, a member said had never considered not vaccinating her child before “learning so much” in The Healing Tribe.

I contacted several people who had spoken out about Lishman’s anti-vax posts and whose comments were still visible on the Facebook group. I asked why there weren’t more.

Healing Tribe member, Kaye, says it’s because comments supporting vaccinations are sometimes removed.

“Most of my comments and that of others who were doing the same are deleted. Maryana said ‘facts are subjective’ and if I wanted to maintain a blind belief in 'science' then she wished me the best elsewhere.”

Lishman says that sometimes comments are deleted, but for good reasons.

“Any comments written in a judgmental or aggressive manner, are usually moderated or removed.”

Kaye says she tried to counter the anti-vax information by linking to evidence-backed research and official health sites.

“I am by no means an expert, but I do understand basic science, and it was clear this was blatant dangerous misinformation. My baby was not old enough to be fully vaccinated when I made the first comment, so it felt very personal to me,” she says.

She says most members wouldn’t have the time or skill to fact-check every comment made.

“I feel concerned that vulnerable desperate people are being misinformed and putting their trust in something that isn't backed by science or a suitably qualified medical professional,” says Kaye.

Another member* based in Auckland left the group after Lishman posted a list of studies that claimed to show a link between vaccines and autism.

“When I saw a list of scientific papers, I decided I would take a closer look. None of it was relevant information so I spoke up about it in the group before removing myself from it.”

She says Lishman has the ability to influence people who don’t  realise  how serious vaccine-preventable diseases can be.

“Here is a large group of people all saying it's bad for children to be vaccinated … I saw comments in this group from people who genuinely don't understand the potential health risks of diseases. One mother had even commented that measles never hurt anyone,” she says.

There are many groups online that push anti-vaccination messages, probably more aggressively than Lishman. But the danger in The Healing Tribe is the audience; predominantly parents with sick family members who are especially susceptible to believing that vaccines cause atopic illness and allergies.

One former member* from Hobart, Australia says The Healing Tribe is an easy target.

"Unfortunately the eczema community are often preyed upon [by anti-vaxxers] because conventional medicine offers so little help and few answers".

She was a highly active member of the group until Lishman shared a post from an outspoken anti-vaccination campaigner.

“I thought the concept of this group was healing through knowledge - not scare mongering [sic]”, she wrote.

Lishman says despite it being a divisive topic, she continues to post about vaccinations because people need to see both sides of the story.

'A SELF-PROCLAIMED EXPERT'

Maryana Lishman charges members for one-on-one health consultations. They are regularly promoted by her and admins in the group.

A 90 minute Skype session with Lishman costs $135 and she also recommends a series of follow-up costing $45 for 20 minutes. Or you can pay $90 to get “email coaching” for a month.

This year, Maryana asked other members to pitch in to cover the cost of a consultation for a mother who couldn’t afford it. “$135 for a 90min consult with me is worth every cent,” she wrote.

Lishman says on her website that she can help people recognise the “underlying factors that often trigger inflammation” and give “clear information, guidance and support” to make changes and get results.

But The Healing Tribe member, Ciara, who has completed postgraduate studies in nutrition says Maryana should not be giving any nutritional advice as it is “putting children at risk”.

“[Maryana] doesn’t have the appropriate qualifications to deal with severe atopic illness. These need to be carefully managed by health professionals.”

Ciara joined the group two years ago to keep an eye on what advice was being given to parents with children suffering from eczema. She describes herself as a “silent” member.

“I dare not give my professional opinion about nutrition as I feel I’d be kicked out of the group.”

Ciara’s takes particular issue with Lishman telling other parents that since she resolved her daughter's eczema, she knows how to help others.

“I also 'cured' my son's eczema using medical advice, zero food restriction and continued to breastfeed yet I’m not trying to profit off that,” Ciara says.

She describes having a child with severe eczema like living in a dark tunnel and feels Lishman is capitalising off this fear.

“Within that tunnel, you feel vulnerable and will do anything to get out. Out of sheer desperation, you will try anything. [Maryana] is taking advantage of vulnerable parents.”  

An ex-member from Auckland who is completing a degree in psychology says she feels it's important to reveal what's going on in private groups like The Healing Tribe.

“Maryana is a self-proclaimed expert in her subject. [Her] 'holistic health coaching' is completely unregulated and it is dangerous.”

In 2003 a piece of legislation came into force called the Health Practitioners Competence Assurance Act to protect the public. However the Act applies to health professionals and since Maryana isn’t registered as any sort of professional - such as a dietitian or pharmacist -  the assurances of the Act don’t apply.

Dr Petousis-Harris says because Lishman is making a point of calling herself a coach rather than a “professional”, she can get away with it.

“Classic charlatan, really. Except this is how we do it in the 21st century; over Skype.”

According to her Linkedin, Lishman holds a Bachelor's degree in Business, Marketing and Management from Massey University and a certificate in “Integrative Nutrition Health Coaching” from the Institute of Integrative Nutrition (IIN).

The course Lishman took is entirely online and takes less than a year to complete.

On her website she says, people can start working with clients from after halfway through meaning you can “recoup some of the tuition cost before you’ve even graduated”.  The current tuition price is US$5995.

When asked if she felt qualified to be giving out advice, Lishman says she has a role in the health field.

“Health Coaches have a relevant role to play in helping to improve health outcomes, as part of a wellness team in partnership with conventional medicine.”

Dr Colin Campbell, emeritus professor of nutrition at Cornell University, delivered a lecture during the IIN’s early years but later asked for his lecture to be removed from their website.

In 2012, the same year Lishman completed her certificate with the institute, Dr Campbell explained why:

“I strongly believe that this program does more harm than good…. On the basis of the information that I had at the time, there is no way that this course should receive professional recognition in the teaching of the relationship of diet, nutrition and health. The fact that the students are led to believe that they are credentialed in this subject is a disgrace.”

But Lishman says that there are plenty of others who don’t think that about IIN.

“Everyone is entitled to their opinion even if they are missing information at the time. The numerous MD’s and PhD on the IIN Board of Advisors may disagree with his.”

Lishman also receives commission on supplements she suggests members buy from iHerb.co.nz and sells an e-cookbook online for $9.99.

I approached iHerb for comment on their business relationship with Lishman but am yet to receive a response.

Lishman has an entire page on her website devoted to disclaimers for both her health coaching and social media pages. It relieves her of any liability, damages, causes of action, or claims.  

She says that’s because “being transparent is the responsible thing to do”.

It’s unclear how many consultations Lishman has conducted since starting her business but she continues to advertise her services, and recently offered a $20 discount on her consultations.

Her site also features glowing testimonies from those who have had consults with her.

“It’s heartwarming to hear their stories of success. I don’t create their feedback, they do,” says Lishman.

 

*Several people I spoke to wished to remain anonymous because of fear of backlash from The Healing Tribe supporters and anti-vax campaigners