Exploring the Disturbing World of Mitoaction.org

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Today, we are taking a little side quest to dive into a group that came up in our coverage of the Justina Pelletier case, mitoaction.org.

This, as you may remember from my conversation with Bo Berman, is a group that purports to be a resource for parents of children with mitochondrial diseases, but as you will hear, may have some other motives.

Just to note that after this episode originally aired on the Patreon, mitoaction.org did appear to make some changes to their website, so those will not be reflected in this discussion.

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Hi, Andrea.

I'm good.

So today we are going down a rabbit hole that we've been inching our way down over the last couple of months as we've been looking into the Justina Pelletier case.

This one is a particularly spooky rabbit hole.

And we are going to talk today about mitoaction.org, which is the organization that was featured prominently in the Justina Pelletier coverage.

You will see in Bo Berman's coverage for the Connecticut television station that he covered this case for.

He interviewed, I think, a couple of the people and they were in the background frequently in the protesting outside of the Justina Pelletier trial.

So this was obviously a point of intrigue.

And oh, I have some fun news too, which is that we are going to be talking to Bo for the main feed.

We are going to be talking to him about the Justina Pelletier case.

I'm going to cover this case just briefly on the main feed because I find that with these cases, there is no happy medium between doing like one episode and doing a thousand.

So I don't really want to do a whole season on the Justina Pelletier case, partly because it's been so covered already and also partly because I don't have as many primary source documents as I would like to be able to cover a case because this one was harder to get records on and also it's just been covered.

So, ad nauseam in the medium.

But I do think it will be very interesting to talk to Bo to talk about his observations of the family and just kind of his thoughts on the case.

Now that there's so much more information out there about it, now that we've seen, you know, the Maya Kowalski case play out in court.

So, I'm very excited to talk to him.

If you all have questions, Bex, I'm sure you will help me put together my questions for Bo, but if any of you listeners have questions for him or things you'd like me to ask him, please let me know.

So, today we are talking about mitoaction.org, and I wanted to start us off with just a little refresh about mitochondrial disorder or mitochondrial disorders.

So, these are something, this is something that played prominently in the Justina Pelletier case, just as a refresher.

The family claimed that she had mitochondrial disorder, and that this was the reason for all of her problems, and that she was given a diagnosis of

somatoform disorder by several, again, world-class health care institutions and that this was the incorrect diagnosis and that the reason that you know they were being suspected was because she had this rare disorder and just as a reminder what we found out during the course of the trial was that really if she has mitochondrial disorder she has the single most rare 0.1%

of mitochondrial disorders that does not show up on any kind of testing.

So it seems highly unlikely.

I think I feel comfortable saying that she does have mitochondrial disorder.

And also of note, which is going to really lead up into what we're talking about today, mitochondrial disorders, this is something that is one of the most ubiquitous diagnoses that parents claim their child has when they are investigated for medical child abuse.

So this is something that comes up a lot.

So I'm not surprised that this is

we find a sort of epicenter of resources at mitoaction.org for parents who are being investigated.

So, Vex,

you did the Lord's work here

going down and reading through all of this information at mitoaction.org.

But as a reminder, can you just remind us, what is mitochondrial disease?

Is it disease or disorder?

I mean, it's a whole spectrum.

So I would say it's kind of mitochondrial pathology, I guess.

I mean, there's a whole lot of diseases and things that are affected or

start at the level of the mitochondria.

So your mitochondria are in every single cell of your body.

They're what creates our energy.

So, it's kind of the energy source of all of our cells.

And the thing is that mitochondrial disease takes on many forms.

And I think any pediatrician or metabolic specialist can tell you that there are severe forms of mitochondrial disease that are devastating.

These are the ones we know the most about.

There are names MELOS, they're all kind of acronyms, but M-E-L-A-S is one syndrome,

and others that are much more well studied and much more understood.

And those patients are usually very devastated by their symptoms.

I have had some mitochondrial patients who have passed away in the first year of life.

One was actually the patient that got me into pediatrics after doing a year of psych training.

It was actually the patient that inspired me to go back and actually just do pediatrics was a patient with severe mitochondrial disease.

And he passed away before he was a year old.

So there is true mitochondrial disease.

And I think if you look at some of the people even involved in mito action, some of them are researchers or do their work with these specific conditions.

And I don't want to, I guess, poo-poo those, you know, anything about, you know, true mitochondrial disease because those children are devastated.

And then there's this whole other world of mitochondrial disease that has become much more,

I don't know if it's popular or much much more known maybe, or people are talking about it a little bit more.

And this is the concept that if you have even the slightest thing going on within your mitochondria, that of course you wouldn't have energy, of course you would maybe have muscle weakness, of course you wouldn't, you know, be able to get out of bed some days and things like that.

And that some of the symptoms that are starting to be associated with mitochondria are maybe chronic fatigue or other things that have come up over the years that maybe we haven't been able to explain.

there's now studies into whether it involves the mitochondria.

So where I am as a pediatric hospitalist is I've had patients with those very severe mitochondrial diseases.

So I actually get, find myself a little bit frustrated with some of kind of all of this being lumped together because I feel it is two very different entities.

And now mito, quote unquote, has become kind of this catchphrase.

And it's difficult because the testing, some of of what Andrea was talking about in the Justina case, would be extremely positive.

And there would be no question in those kids that have those true genetic syndromes.

And now there's this whole world of kind of sequencing all your mitochondria and looking into everything.

And sometimes I think ignorance is bliss in a way that when we can find so much information.

So what if I found it out now at my age that shall remain nameless, or I have a flaw in my mitochondria?

Does that affect me?

I mean, I think I've done okay, right?

And maybe I'm tired sometimes, and maybe I have this sometimes, but I think it's that it has become this whole world.

And sometimes, like Andrea was saying, it is not just you have mitochondrial disease, it is the most severe, debilitating, wheelchair-bound G-tubes, ports, pick lines.

That's where I struggle because those kids that truly do have mitochondrial disease and diagnosed at a young age went through all of that and often didn't make it.

So,

right.

And if it was that severe, it would also have shown up.

Yes, have shown up in the testing.

So it's, I think it's, and again, it's a very strong parallel to what we saw in the Mayakowalski case, where not only does she allegedly have this rare disorder, complex regional pain syndrome, you know, she has it.

It's the most severe.

She has the worst.

you know, version of it that anybody has.

And yet it's also the most difficult to detect.

The one that doesn't show up as anybody else's CRPS has ever shown up.

And she fails every test that, you know, so it's like those things, just like the likelihood of that being true is so tiny.

And I think one of the things that perpetrators of this abuse really exploit is that tiny percentage of medical uncertainty.

Could it be possible?

There are so many things where you can't say it's impossible, right?

So there's a couple of things that you were just saying that I kind of wanted to see if we could elaborate on and also just kind of, you know, segue on because I found myself kind of going back to this again and again as I've been talking about the Justina Pelletier case and also just dealing with this question of mito.

So mito has shown up also in my sister's case.

I mean, I just, I cannot overstate how frequently this shows up and how frequently people like Dr.

Bowles show up to say.

literally anything is mito, right?

I mean, literally anything can be attributed to mito, according to Dr.

Bowles.

We will do a deep dive episode on Dr.

Bowles because he deserves his own space.

He has earned it.

So I am famously not a doctor.

So if I can put it in sort of the layman's terms here, it sounds like what you are saying is that mitochondrial disorders or mitochondrial diseases are like things that have to do with the mitochondria and that's what they have in common.

So kind of the way that we would say heart disease and we could be talking about a bunch of different things that happen with the heart, but we're talking about the same body parts.

I mean, is that what I'm gathering?

So there's a bunch of different things that can go wrong with your heart and there's a lot of specificity around that.

And you would have different tests and different criteria and different symptoms for different things that go on with the heart.

But we're talking, when you're talking about heart disease, you're talking about sort of a broad group of things that can go wrong with your heart.

I mean, is this the same?

It's you're talking about a broad group of things that can possibly go wrong that relate to the mitochondria.

Is that what I'm gathering?

Correct.

The problem with mitochondria, not the problem, I mean, thank God for them.

But the thing about mitochondria is they are in every cell in our body.

So it also allows for symptoms in every organ system.

So I think that is another reason that maybe it does come up is that

because they're everywhere, they can affect everything.

And again, those most severe cases, those kids, one of the reasons they struggle so much is because you need mitochondria for all of it.

And again, I think that's why they do show up in these cases.

The interesting thing is, though, mitochondrial disease, like Andrea was saying, you need them from the day you are born.

So it's the ones that show up in adulthood or teenage years, not to say there aren't some specific ones that do, but it also brings into question, like, what were your mitochondria doing for those first 15 years?

Because we need them our whole lives.

Right, right.

So yeah, it seems like it makes sense that for these more severe disorders, those are things that can really limit life expectancy for infants and that kind of thing.

You know, so yeah, a couple of things I want to say.

I mean, I like what you said there about the ignorance is bliss thing.

I went down this rabbit hole just to share a little personal experience that I had with my last pregnancy and the idea of testing for things.

So I had a very strange blip in my life.

Fortunately, healthy pregnancy, healthy baby boy.

He is almost two years old.

He is a total bruiser.

Nothing wrong with this child.

But when I was pregnant with him in my first trimester, I had the blood test that they now use to determine, you know, it's like your first testing for genetic disorders, but they, you know, used to do amnio and that kind of thing.

And now they have a very simple blood test.

I cannot remember what it's called.

But I think I purposely blacked a lot of this out so that's probably why i'm not able to access it this was a this was a rough a rough couple of months for me um so my first uh test that i took it came back with no results and i retested and it came back with no results and my doctor was worried that i had miscarried so i had to go in and it was this very awful experience i had to go talk to a geneticist i had to go but get a bunch of additional tests done we had to do you know, an additional ultrasound and I could have gone in for like, so one of the questions we had with the geneticists, my husband and I went and we're so lucky here we have Seattle Children's Hospital it's a truly like incredible world-class hospital I got such good care there they were so lovely it was really a positive experience I understand that's not the experience everybody has with these things and we can talk about that today because I think it's relevant but I was very lucky I had a great experience with them but it was very hard it was hard to go get that additional testing it's very hard to be pregnant and not know if there's something really wrong you kind of have to wait till the baby grows a little bit more to do X Y and Z so it was very stressful And we, my husband and I went and met with a genetic counselor, and she sort of talked us through the things that this could mean.

And

there was like, well, this can happen because of,

you know, one of the reasons was because of BMI and I didn't fit in that category.

So they were like, it's not that.

It can happen because of trisomy 13 and a couple of other ones that were like severe, you know, again, not compatible with life is the terminology they use.

Very severe cases where, in my case, I would want to intervene and not continue with the pregnancy if the baby was testing positive for those.

I realize that's a deeply personal choice, but like that is, that's, there were very, very severe things that this could mean.

And then also there was just a category of question mark.

We have no idea why this happens.

It just happens sometimes, and you might be in that category.

So they did a bunch of scans.

Everything was lining up with like, this is not a baby with trisomy 13.

This is not a a baby with these very severe genetic disorders.

But because we had opened that can of worms, then I could get these other sort of testing, you know, the CVS testing, and then the, there were the immunocentesis, and those had a little bit of a risk of miscarriage, you know, very small, but had some risks associated with them.

And the question then became, do you want to do this additional testing?

And if you do, do you want to test for this whole laundry list of things that your baby might have or be genetically predisposed to?

And I made the decision that I did not want to do that.

And part of the reason was because the conversation that I had with my doctor and with the genetic counselor was, okay, if we are screening for things that would be not compatible with life, that's something that I want to know because I'm going to make a decision based on it.

But if it's not something where I'm going to terminate my pregnancy, then I don't want to know because I'm not going to make any decisions based on it.

And there's nothing I can do right now.

And we just have to see how things go.

So, you know, I was very lucky.

Again, this all turns out well.

I have a beautiful, healthy two-year-old boy, but it was very interesting to think about, like, you know, and we talked through both of us extensive health histories and all the things the baby might have and, you know, testing for this and testing for that.

And this is really common part of pregnancy in the modern era is like all of this testing that you can do.

And I can see where for an anxious parent, this could be the road to hell because

you could then find out.

I mean, what if somebody like, like oh there there is an issue with their mitochondria or there is an issue with their this and then like you think you're seeing symptoms or maybe not you know there's a lot of things that that could be symptoms or could not be symptoms i mean it's very this this is not a black and white science and so i i can see how on the one hand it's really wonderful that we have so much more awareness so much more you know testing capabilities and we are getting into some of these nuances and some some of these things are extremely complex and i think we should talk about that And also, it can really exacerbate things for anxious parents.

And as we always talk about, abusive parents are not anxious parents.

They are, I mean, I guess they can be both things, but munch houses by proxy abuse is not parental anxiety.

It is intentional deception.

So they also open, unfortunately, a huge door for abusers to just come in and say, my child has this thing and it's going to be very, very hard for doctors to disprove that your child has that thing.

And then you find, you know, these doctors who have, I don't know, if they are suffering from delusions, if they are conspiracy theorists, or if they have just thrown their ethics out the window for financial reasons, all of the above.

I truly don't know what motivates this doctors.

It's something I spend a lot of time thinking about.

But then you have these doctors that come in and say, yes, this child has mito.

Yes, literally any child you walk through my door, I will say that that child has mito.

And then you will be off to the races with your lawsuit.

So, yeah, so that it's a complex morass of things.

So Bex, I wanted to just start by level setting around not only MITO, but like some of these other, you know, chronic fatigue symptoms, fibromyalgia, like some of these things that are very real and that people do have very bad experiences with the medical community sometimes because doctors can be dismissive.

Medical misogyny is a real thing.

So things that like these pain disorders that primarily affect women, of which there are a number, you know, yeah, like those are very real phenomena.

They are well backed up by data.

These are things that really happen.

So, can we talk about that medical misogyny, medical bias, medical gaslighting piece?

Like, how can we just sort of level set about what that is and sort of how it crosses over with some of these more rare, hard to pin down pain disorders?

I think this is a, I mean, it's a very slippery slope, I think, and it's difficult to kind of tease it out.

But at the end of the day, physicians should not be seeing some of these, you know, diagnoses on a problem list and necessarily changing how they address a patient when they're in front of them, right?

So someone who presents with right lower quadrant pain, that's the lower right side of the abdomen, and they have fibromyalgia or chronic fatigue or any of those things, if they have point tenderness in the right lower quadrant with associated symptoms, you should be looking for appendicitis, right?

It doesn't matter what the backstory is.

I think what becomes hard is exactly what we've been saying all along is it's the patient with those diagnoses, with a whole list of those diagnoses, but there's not a timeline or a good story for how those diagnoses came to be.

And then that all the actual testing, all the things that came along the way pointed in another direction, but those things are still considered to be the diagnosis.

Or they didn't take any of the recommendations to go into one of the pain programs that have been extremely successful in helping patients with some of these conditions.

And they said, no, I'm not interested in that.

I'm not interested in that, but they're interested in the most extreme.

treatment options or that it's the case that is the only one ever that didn't respond to X, Y, and Z.

I mean, as we saw with CRPS, the most common treatment is physical therapy, occupational therapy, psychotherapy, under the care of a pain medicine doctor to maybe use medications as you're going through those processes that might be painful for you versus you go to the biggest gun pain medicines before you've stepped, you know, on all those other options along the way.

So, I don't think it's just the diagnosis.

I think it's the backstory and the whole story.

But as a physician, it is really hard, and I've said this to look into every patient's backstory.

And I mean, I'm in pediatric, so that means only to age 18.

What about you get a 70-year-old with this list of diagnoses?

How could you ever go through?

And when they were younger, there weren't even electronic medical records, right?

So I'm at least in a little bit of a better place where a lot of what people have now is in the electronic medical record, but it's still difficult to go back and find where did all these come from.

So I think my antenna or my kind of concerns start to go up when it is so many of these and yet along the way

that certain options haven't been pursued and then along the way when other diagnoses were suggested they were kind of denied by the family and then

that you can't even kind of follow that path to find how this all came to be.

And that's when I start to not necessarily get worried about medical child abuse, but I start to kind of want to know more or at least want to dig more in those scenarios.

Well, and Bex, I would assume that in this era of TikTok doctors and WebMD and just the era of too much information, that there must be a fair number of non-abusive parents that come in with all kinds of concerns, with booklets, with leaflets, with too much information.

And,

you know, obviously every

parent and every person, you know, who's having a health condition, especially parents, is well within their rights to like do their own research.

And I've become very allergic to the phrase, do your own research, because I think that came up a lot during, you know, during COVID and such, where it's like, now, obviously, like people

are entitled to go find their information, but it's a treacherous path in the information age.

And I will, I say that for myself as a person who does a ton of research on the things that I report on, because you need to be able to tell the difference between reliable research and good sources and all that kind of stuff.

And that's like not something the average person is trained to do.

And so I do worry about people coming in with sort of these ideas about what might be going on with their child.

And, you know, I was talking to someone today about one of the things that like has struck me.

And Bex, I don't know if you've had this same experience.

I think that this might be a thing, a lens that lives specifically in my head, but it really strikes me.

So a bunch of these cases that I've read about, and I believe this also came up in the Justina Pelletier case, is one of the symptoms that is so common.

I mean, I truly can't think off the top of my head of a of a parent that, I mean, a couple of parents, I think, but many parents report in these cases, in medical child abuse cases, that their child is having seizures.

And it's extremely common that they report seizures that no one else sees.

Or the seizures that other people see

are these

very subtle events.

So seizures are one of those things, like many of the things that come up in these cases, where there's a huge range of like someone can be having a grand mall seizure.

And that's like what I think most of us think of as a seizure right on the floor shaking you know having like a very very dramatic event and then they can be anything from that to like someone sort of freezing and staring off into space so one of the things I've seen come up again and again in these cases is someone will report that their young child is having seizures and they'll ask a parent or a doctor a doctor even and be like oh have you observed a child having one of these episodes and they're like oh yes you know I saw that they sort of stared off to space and especially if you're talking about lay person right if you're especially talking about family members friends oh yes I've seen them have a a seizure.

They would like freeze and like stare off into space for a couple of minutes.

I have a six-year-old, almost six-year-old.

Do you know how frequently she does that?

Like, kids do that.

Like, kids are dreamy.

Their attention spans are like little squirrels.

And there are many times when I'm in a conversation with Fiona and I will be like, Fiona, babe, honey, like, and she's just like staring off into space.

Now, if I were to say to my husband or someone around me, like, she has a seizure disorder and look, she's having a seizure right now.

That would be sort of hard to disprove, but she's just doing a thing that like children do.

And I think about this all the time.

And like, literally, it will happen sometimes.

And I'll be like, oh my God, if I was an offender, I could say that that was a seizure, right?

Because, and I think that's where these things can get so nuanced is that, like,

and again, it's the combination of having the most subtle presentation and yet the most severe life-threatening symptoms.

Those two things do not easily go together.

But I can also see where an anxious parent who really was afraid that their child had a seizure disorder for some other reason could sort of be convinced of that.

It's just all to say, I think that the psychological phenomenon that go in and around all of this, from like doctors to the patient experience to the parent experience, are pretty complex, right?

Yes.

And I think seizures are one of those things that I've actually gone down the rabbit hole a little bit as well,

because I have also questioned the whole idea of how much are the doctors culpable, right?

And this, I'm sure, is a touchy subject for some physicians, but I will stand here, sit here, and say that I have been complicit before because I didn't know, or I...

it was too small of a story at that time or they came with a G-tube and G-tube feed.

So I continued them, right?

So I can honestly say I have been complicit.

At the same time, when does that become a true problem?

And I think that's the same as when does medical child abuse become more your concern from just an anxious parent, someone who comes in and wants to know if their child's having a seizure and you hook them up to what's called an EEG and they have one of the episodes that mom is concerned about.

And you can say on the EEG, this is not a seizure.

And you can see this light, like their shoulders, you know, relax, that this idea that I can sleep at night knowing this is not a seizure.

The thing is, some of these patients have been on multiple EEGs, multiple times, and a seizure has never been caught.

Then they go home and they come back and they report the worst seizure that ever happened.

The patient turned blue.

You know, they had to give them CPR.

And so any physician who is hearing these stories is going to start.

saying, okay, so the EEG is normal, but the story they're telling me is a child who could die of a seizure at home.

So when do I start medication, right?

I mean, because there are times where an EEG can look completely normal unless you capture the event.

So if these events are happening once a month, do you hook them up for a whole month or do you hear the story and say that is concerning enough to me to start a medication?

So that is where I think these kids do come to me already on two or three medications.

Because if you look back over the timeline, the story has only grown over time from they do these staring episodes to now they're turning blue and I need to give them CPR to now they're lasting 30 minutes and I have no way to stop them.

So again, the story escalates and escalates and escalates until somebody gives them the medication.

And then at the next place, it escalates even further.

And again, negative testing can prove certain things.

Negative testing cannot

ever disprove something completely.

I mean, I'm sorry, I can't, but there are certain situations.

And I think the the patterns show that there are certain conditions and certain things that do come up because they are those ones that leave gray area.

Right.

And they don't come in saying, you know, that's why you don't see cases where they come in saying, like, I'm trying to think of something off the top of my head, but they're like, you know, it's not these things that fall into that category of sort of yes, no.

I mean, they fall into,

well, we did an echo.

No, they don't, right?

So it's like

the one that comes up a lot.

Cystic fibrosis, yes, is the one that was in the Hopiobara case and that has come up in many cases.

And that the most common way to test for that is to do a sweat test where they essentially collect sweat on the child's skin while they're running around and then test for the salt content.

Hopiobara interfered with that test by putting nasal spray with salt in it on the thing.

Very easy to mess with.

And that is, I think, why we see a fair amount of fabricated CF in these cases.

So, or, you know, parents just lie about test results, right?

So, yeah, and I think we're talking about that sort of spectrum of things that that can happen where one is an anxious parent who's worried that they have their child is having seizures and they are going to be relieved when they find out that their child is not having seizures.

Be like, oh, my kid's just staring off into space, and that's just something that six-year-olds do.

And it's not actually a seizure, even though I accidentally went down the rabbit hole and convinced myself that this was a seizure because 15 people on TikTok convinced me that.

And I say this is a very relatable thing, right?

In our modern era, we're like, we get worried that we have this thing.

You know, a lot of people are worried words.

A lot of people are like, I have a stomachache.

It is definitely cancer.

That's not a, that's not a factitious thing.

And let me ask TikTok.

Let me ask TikTok.

And then TikTok will be like, you definitely do.

You're definitely going to be dead by tomorrow.

Yeah.

I mean, I think that is a thing that happens.

And then on the other sort of side of the spectrum, if a parent is not relieved, it may be because they are suffering from delusions, right?

They might be like, nope, this doctor is conspiring against me and my child does and they're against me and they're out to get me.

And, but I do, you know, what I've heard from the professionals that have worked on, you know,

numerous cases is that those parents that are having delusions are actually pretty easy to weed out, right?

They're not trying to make themselves look credible.

So they don't usually, they seem as though they are having a psychiatric issue and that is then the solution, right?

For parents who are abusive, they are going to not be relieved by that test result and they're going to insist that their child's having that symptom.

They know their child's not having that symptom.

They know their child is not having a grandma seizure where they turn blue every time that everyone else turns their back.

And again, that's why they do full investigations.

That's why they talk to friends and family.

Because, yeah, it's totally plausible that a child might not have a seizure while they're at the doctor, as you said.

You know, it's not, they're not having them frequently enough for that to just line up perfectly.

It's not plausible that no one else in the child's life would ever witness a seizure.

I mean, I suppose there is some off chance if it was a single mom that was for some reason extremely isolated with a child, but it's not likely.

And so I think it's, it's always going to be looking at these things collectively.

And so let's talk about what mitoaction.org is

because I think, you know, it is very predicated.

All of the advice on this website, we can talk about what it is and who it is.

purportedly for and who we really think it's for.

And, you know, one of the assumptions that it seems to go with is it is very, very easy for parents to be suspected of medical child abuse.

And that's not true.

And I think it's, it's interesting that, so I am a huge fan of support sites for people.

I mean, I.

Yeah, so tell us

what is mitoaction.org to say, so the idea of mito action is that it is a site to gain, you know, information for families, for those suffering from mitochondrial disease, for those who know people with mitochondrial disease, that they can get more information.

You know, their mission statement is basically that, you know, we want people to learn more, understand more, and we want to be a source for them.

And we also want to give back to people who are suffering from this and, you know, help them get make-a-wish trips or, you know, fund different things that these families might need.

So I think it's a beautiful concept.

And this exists for pretty much every condition under the sun now because of the internet and everything we can do.

So I am concerned because there was a time when these support groups, I would say, were the best thing that happened.

We have a camp here in Florida called Camp Boggy Creek where kids with, say, there's a diabetes week, when all kids with type 1 diabetes go to Camp Boggy Creek.

They have endocrinologists on staff to administer insulin and to keep track of the kids, but they can meet other kids who have the same condition.

And then the parents can meet other parents.

And I think it's brilliant.

I mean,

it really helps these kids and it really helps these families.

And now you have things where I am disappointed to see that things have changed a little bit.

And unfortunately, in this world, as we've said, there are people with good intentions and people with bad intentions.

And if you read Mito Action, it seems right off the bat that they have good intentions.

But I can tell you there are sites for congenital heart disease and asthma and leukemia that don't have a whole section called how to respond to allegations of medical child abuse.

That concerns me.

That it has to be on their, basically on their main page with a link to this area.

That, and if you read every little subsection, there's a sentence along the lines of, um, this might actually deter a physician from considering medical child abuse if you do it this way.

Or be careful because this is one of the things they look for with medical child abuse.

This is a red flag for medical child abuse throughout the website.

And that

is a red flag to me.

That's concerning.

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So looking through this website is

very disturbing.

And I will tell you

why,

from my perspective.

And I think here's what was striking to me, right?

When I first looked at this, because as you said, I mean, all that is very well said, Bax, like we totally recognize that if your child has some disorder, getting support, getting resources, finding good doctors, finding just other people to talk to about it, like finding resources financially, emotionally, like all those things, so important.

And I never want to say like that these things shouldn't exist.

This one in particular

is disturbing.

And one of the things that struck me reading about it is like, I read through this and I have no better idea

than when I started after reading every single page and linked page on this thing.

I have no better idea about what MITO is or isn't than when I started because that's not the information that they're sharing here.

According to this website, it sounds like Mito could be just literally anything.

And The information that they seem to be more concerned with sharing is what what to do if you're being investigated for medical child abuse and essentially how to cover your tracks.

Because it says all of these specifics about don't make social media posts like this.

You know, one of the things that really stuck out to me was when you are posting about your child on social media, try to, and I'm paraphrasing, but try to focus on the positives.

Because if you are seen to be posting only negative things, that will be considered a red flag for medical child abuse.

They're right about that, but a parent shouldn't really need to be told

to not post only negative things about their child's health on social media.

If they are doing that, that behavior is a red flag for child abuse.

And it also makes it sound as though every parent who has this diagnosis

is dealing with this diagnosis or suspects that their child might have some kind of issue with their mitochondria will immediately be reported for child abuse.

And that is so far from the truth.

There is no data to suggest that like these families are somehow being, you know, quote, targeted.

They also used when they referred to some statistics about how rare medical child abuse is, they used completely, I don't know what data they used because they did not reference it, but the statistic they used is wrong.

And also, you know, all the experts have that I've spoken to have said that they believe that all of the statistics we have are underestimating how frequent it is because of all the issues that we talk about ad nauseum on this podcast, from underreporting to low rates of conviction to who ends up as a confirmed case and who doesn't.

So they're wrong about how rare it is.

There really is the presumption that this does not exist.

And I don't think that we should assume that families that are being investigated are guilty.

I don't think that's, that's not how our justice system works, in fact.

So it's always worth doing the investigation.

Something can look like medical child abuse and be something else.

I will say it's extremely rare.

As I've talked to experts, you know, Beauker, who's one of my mentors and colleagues and has been a Munchausen biproxy expert for decades.

She worked as a psychiatric nurse.

She has testified in so many cases.

She said, we were doing a presentation next week together at APSAC and at the APSAC conference, and I was looking at her slides.

She has never seen.

She has never seen a false accusation of medical child abuse.

Never, not once in her career.

Has she seen something that she considers a false accusation of child abuse.

So it happens.

Everything happens.

Mark Feldman has seen a case.

He has one case.

We're going to talk about it at some point in the podcast, trying to wrangle everyone for that interview.

So this idea that false accusations are just so rampant, it's false.

There's nothing to find out.

I think it's implied throughout this site that this is happening all the time and that it's almost a witch hunt where we're going on Facebook to find every parent who might be a perpetrator.

No, it's coming in front of us and we are so

absolutely have the time and band for.

Oh, I mean, it's all I do.

I mean, I should talk.

I do go down rabbit holes, but that's not it.

I mean, I think.

Yes, but you do it specifically for the podcast.

You don't do it just because that's not part of your job as a doctor.

That's part of your job as a contributor.

And I think it's true.

It's the way this whole site, it just really bothered me because it'll be, it talks about communicating with medical professionals.

I think that's important.

Parents need to know how do I advocate for my child.

I love advocacy is a huge word that I take very seriously.

You do advocate for your child, but I, as a pediatrician, also advocate for your child.

Like, I've had to go to bat with, you know, the MRI team to see, can I get an MRI done today?

Because I'm truly concerned about this patient.

So, again, I am also advocating for children every day, but to start that paragraph with, you're going to find yourself advocating for your child when they have a complex condition.

If the child is capable of advocating for himself, by all means, allow them to speak to their doctor.

This is good practice, but can also protect the parents against concerns for medical child abuse.

I mean, again, why not just say it's good practice?

I mean, I love talking to the kids because I feel like kids are freaking brutally honest,

but they also

can tell some of their own story.

And why is that not just good practice?

Why is it do it so you don't get accused?

And that's how all of this starts.

Everything on this site, more or less, is framed as this is a practice to prevent a false accusation.

False accusations happen.

They're, again, they're extraordinarily rare.

This is not something that needs prevention strategies.

It's not.

So the amount of text devoted to prevention strategies for false accusations of medical child abuse is extremely alarming.

And to be totally frank, that tells me who this site is for.

And I don't think this site is primarily for parents navigating our morass morass of a healthcare system around their child's legitimate condition because

there's just such a focus on false accusations of medical child abuse.

So I want to read just like a couple of things that really stood out to me.

And Bex, I know you took a ton of notes, so I would love to hear kind of just,

let's back up what we're saying.

I realize like this is sort of a provocative thing to say, right?

I think that this website is geared towards offenders.

I do.

I do feel that way.

I mean, again, it's targeting every it i don't know it just bothers me because it's like you may be trying to help the good parents like i want to believe that but truthfully how do you know so you are enabling the ones who are abusing that like this is a full this is a net that you're just casting out into everybody out there so you're not caveating it with hey if you really are abusing your kid don't do these things no you're telling them to deal with our facebook accounts right they're not saying medical child abuse is real and it happens and we should take it seriously.

And that said, you know, we feel like too many MITO families are getting caught up in this and being suspected.

Like that would be a different conversation.

That is not the tone of this website.

The tone is every family who is investigated for this is being falsely accused.

They do not leave any space for the fact that parents abuse their children.

So it is a flat denial of medical child abuse.

And here is what it is analogous to me.

It is the same thing.

They are seeing it through the same lens as friend of the podcast, JK, worst enemy of the podcast, Mike Kicksenbog, the reporter for NBC that has done this absolute hatchet job of a series called Do No Harm.

And yeah, I'm using some strong language about him today.

I think about this man, I'm sure, about a thousand times more than he thinks about me, partly because, of course, he's covered my sister's case, but he's covered many other cases I've taken a close look at.

And, you know, he approaches this with the lens clearly from his work.

He approaches this with the lens that medical child abuse does not exist.

And I'm going to, oh, and frankly, other forms of child abuse don't exist because he's covered equally dubious cases of abusive head trauma and non-accidental injuries that do not add up.

When you look at the police reports, when you look at the other sort of source documents, and I am going to include only the information that proves my point.

And it is bad reporting.

It is unethical.

And at this point, I feel as though he is not only condoning this abuse, he's participating in it because he's putting pictures of these children in his pieces.

He's putting their specific, you know, these specific perpetrators.

He's lionizing them.

He's saying they were victims.

This website, to me, sees this issue through that lens.

This doesn't exist.

So we're going to tell you how to not get flagged for it because we think that any parent that's accused of this is being falsely accused.

So it's such a bad and faulty premise.

And I worry that a parent that legitimately either has this diagnosis or is concerned that their child has this diagnosis will find this and end up in a support group that has clearly been infiltrated by perpetrators and

is possibly being run by them.

I don't know, but it is, it essentially feels to me like a support group for perpetrators.

That is on every page.

And so here I will give you a couple of examples of some of the things that stuck out to me the most.

So one of them, they flag unintentional versus intentional exaggeration.

Now, I want to caveat before I say this that one of the things that we've talked to doctors about frequently is that every patient exaggerates and every to some degree or another, almost all like patients on themselves and often parents.

I actually feel like I don't necessarily with my children.

I'm sure I have in the past with myself.

I don't know.

I'm trying to like sort of keep myself in check here, but like, you know, that is very common basically for patients or parents to exaggerate symptoms or be like a little bit hyperbole about their descriptions of things, either either because like they were emotionally affected and that's how they remember it, or because even they're feeling, they're worried that the doctor's not going to take it seriously.

And so they're amping it up a little bit.

This is true and this has a lot of like crossover with, you know, certain things like other biases that are very well known within the medical system, right?

If you're a woman, your pain is less likely to be taken seriously.

If you are a black patient, your pain is less likely to, you know, black mothers have worse health outcomes on all fronts.

I mean, there are reasons that people would maybe like amp it up a little bit so that they are taken seriously that are very legitimate.

And it's just a very human thing to do.

Or, you know, the other thing, the other example I've gotten from a couple of doctors is like, you know, if you ask a patient, like, how much do you drink?

And they say, oh, yes, I have like two beers a week.

You probably have like two beers a night, right?

And so it's like, yeah, it's like, there are those things that like are human, right?

So that is a very real thing.

Here is the example of unintentional versus intentional exaggeration that mitoactionorg.org gives.

Unintentional exaggeration happens with relative frequency in the medical world.

True enough.

For example, a parent may state to to a child's doctor that a child has a high fever with a temperature of 101.2 degrees Fahrenheit, whereas the child's doctor may consider it a high fever only if it's over 103 degrees Fahrenheit.

So, okay, like that's true enough, right?

Like

I wouldn't take my kid to the doctor with a 101.2 fever because like that the 103 thing I think is fairly well known with parents, but like, yeah, an anxious parent might, or if the child was having other symptoms, I might say my child has a high fever when they have a 101.2 fever.

True true enough right that's that's an example i think we can all relate to here is their other one similarly a patient may claim to have a hypermobility syndrome and upon examination turns out not to be the case those examples are not analogous

now a patient could be misdiagnosed right with a hypermobility condition so the hypermobility thing it's like okay you're giving one example where someone's just like a difference in terminology right a high for fever for a child versus a regular fever for a child.

The other one is like, oh, a patient might come in and say they have something and they don't really have it.

Exactly.

And I gave the example, I think, on one of the other ones that was not remembering your kid's birth weight, like when you're in a really stressful, like, you know, in a situation, how much did he weigh when he was born?

Oh, I can't remember if it was him or the other one or my other five kids, whatever, that how much they weigh versus they had the cord wrapped around their neck to the point they needed CPR and they were put intubated and put in the NICU for three weeks.

No, they weren't.

Right.

Right.

I mean, that's two completely different things.

Exactly.

So, like, or yeah, with the birth weight example, like if I switched up my kids' weights and one of them was like, and of course, to the point, I can't remember.

Like, I said the one that weighed, you know, six pounds actually weighed seven pounds or vice versa, versus me saying that my healthy, you know, full-term seven-pound baby weighed two and a half pounds and was born, you know, four months premature and et cetera.

That's two different things.

Those are materially different.

And so that one, I feel like, was a huge red flag.

Yeah, I mean, what are some things that like specifically stuck out to you about the way they phrased things on this site?

Oh, so much.

Oh, so much.

I mean, the whole thing.

I have so many little comments, but I think the other big thing is, is they recommend to families to bring medical records with you to the appointment.

Bring all the medical records that confirm the diagnosis.

That worries me as well.

So if you are only bringing the ones that confirm it, but you're not bringing the 10 doctors notes that said they think it's something else, you are not bringing the whole story.

I mean, the saying they have it is not necessarily the right answer.

Again, it's saying there could be a test that was false.

For instance, kids sometimes get stool tests when they're, or tests of their poop when they're doing a clean out.

So they're like getting a bunch of medicines to help them poop.

If you run a stool test on that poop, it's going to be different than on a day when you're just having your your regular poop.

I can't believe I'm saying this so much.

But at the same time, if you've done that test once and it was positive, but then they're like, wait, they were on all these medicines.

Let's confirm it.

And then you do two confirmatory tests and those are negative.

Should you only bring the one that said it was?

Right.

So they're almost telling them.

choose your story.

Like go back through and find only the papers that say what you want them to say.

And I think that's inappropriate.

In the world of electronic medical records, the idea is we can see all of them.

And again, you

didn't say sign a release and make sure your provider has all the information.

All the information.

Bring select medical records to back up your diagnosis, which to me is says saying cherry pick.

I mean, right?

And I think also it stood out to me because if you look at, like, you know, looking at this Justina Pelletier case, one of the things that he

that the lawyer who represented them said was that he presented him with these medical records, right?

With some selections from the medical records.

That's not the same thing as getting a release and getting to see everything because they're only going to include the ones that back up their story if they have like a point to prove.

So I think that's that.

was definitely alarming to me.

And as you said, like another thing, you know, we sort of talked about like how all of this is explicitly angled towards so that you don't get accused of medical child abuse.

You know, one of the other things was saying, like, make sure other people are involved in the child's care.

Make sure the other parent is involved in the care.

It's mostly moms that get accused of this.

So make sure that, you know, you have support, like not just because that's a good thing, but because

that will make you less likely to be accused of child abuse.

And I'm just like, it's so

foremost on this website of that being the foremost concern.

Right.

And they say, you know, sometimes parents have to mislead medical professionals, but they harbored no intent of harming anybody.

That doesn't compute to me.

I mean, they say.

Is there an example that you can think of where a parent would need to mislead medical professionals?

I mean, again, I want to know the story.

And if a parent is concerned, I want them to tell me what they're concerned about.

I don't want them to make up a story to get me there, right?

I want them to say, this is what happened, but I watched a movie where a kid had something very similar and he had a brain tumor.

I'm scared, right?

Because I can have that conversation and I can maybe we can talk and I can come up with a way to explain why I think this situation is different.

But at the end of the day, that parent

I can talk to and I feel like I'm not set up to already.

fail or to be told so mito action says sometimes parents need to mislead medical professionals it says here it says a parent may state to a mito specialist that the child is having seizures but a subsequent conversation between the specialist and the neurologist indicates she's not.

Or a patient may represent that the gastroenterologist instructed them to go off a medication when that was not the case.

Such misrepresentation is done with no intent to cause harm to themselves or their child, but it is misrepresentation nonetheless and has a strong impact on the family and the relationship with providers.

And then these can come back to haunt you.

if you're ever accused of medical child abuse.

I mean, again, don't do these things because it's harmful.

Just not saying don't do these things things because it's harming the child.

And those are serious examples.

And those are examples of things that perpetrators do regularly, right?

Of like misreporting, like again, the seizure thing.

I mean, they're giving a specific example that has come up in so many cases.

Like, there's a reason that's a red flag.

It's because it's a red flag for abuse, not because everyone's in a conspiracy.

I mean, it's so wild.

Like I said, I'm trying to put myself in the mindset of I really do have a child that was diagnosed with, let's say, me loss, one of the mitochondrial diseases that I do know a lot about, one of these genetic conditions, and I want help because I'm scared.

And this is where I go.

Like, I just think it sets up the medical profession to already, they're going to be doubting us.

And it's going to already impact that relationship.

I mean, they right off the bat tell you who in the hospital is a mandated reporter.

So to, you know, to make sure you be careful.

And they say an offhand comment or a venting session can easily be misinterpreted by someone who maintains this professional obligation obligation and may lead to an investigation by child protective services.

I mean, that's.

So, first of all, so I want to, I want to do a double debunking.

So Bex, first of all, is one offhand comment going to lead to a report.

And I mean, it's truly acting as though like most parents don't act weird under intense emergency situations.

Like, I think that's the other thing about sort of the Beata characterization and also the Pelletiers, right?

Like the Pelletiers, to be totally frank, watching that documentary, they seem like a nightmare.

Like, I think they seem strange and they seem like totally irrespective of whether or not they abuse their child.

Lou Pelletier seems like a nightmare.

I think he's actually quite proud of how much of a nightmare he is to deal with.

You know, he's belligerent.

He was getting in all kinds of situations that were, you know, making a difference.

I mean, he says it.

He says it.

He's proud of it.

I mean, I think that's like, that's just his, that's just his whole, you know, persona.

Lots of parents are a nightmare to deal with.

I mean, this is like, if you are a parent and have met other parents, or you are a doctor that deals with parents, lots of parents act nuts.

Also, like the world we live in today, like people have all kinds of weird theories about medicine, again, because of the internet and everything else.

Like if doctors were reporting every parent that acted like a little weird, then that's all anybody would ever be doing.

So that's point one.

Point two, another interesting data point that I learned from B Yorker as we're working on this presentation together.

Less than 5%

of the reports that she has made throughout her career have resulted in an investigation.

That is not because B.

Yorker is reporting too much.

I mean, there's a huge percentage of reports that get screened out.

That's not, again, because everyone's so trigger happy to report.

So I think that like, well, we should never assume that someone's guilty because they're being investigated.

In the vast majority of these cases, they're being investigated for a reason.

And even getting it to the point of investigation, I agree.

I mean, it's, there's a person on a hotline or a person reading your report online that is not medical at all, has, you know, no background and is probably scared because of everything that is happening in the world right now, especially in Florida.

And it has to even get past them before it even would get to the people who may understand it a little bit better.

So these things are getting closed before they've even started.

And I think the other thing is this website, ooh,

one of their sentences, hospitals are often too quick to separate children from parents suspected of medical child abuse.

Do hospitals separate parents from children back?

No.

Oh, courts do that.

That's right.

Courts do that.

And that, again, and do the courts do that for no reason?

I know.

It's just, it's setting us

up before it even starts.

Oh, my God.

Yeah.

It's, it's really demoralizing.

And I should say, with that 5%, less than 5%, that was medical child abuse thing.

So I do think there's other, again, we've talked about like there, there are real problems here with in terms of like if a parent is being reported for not having enough food in their fridge or having weird, you know, like or living conditions that don't meet the standard or whatever, these sort of other things that take up way more of the system's time, you know, it's again 70%, 76% of those sort of non-abuse reports.

Like those probably are not such a high threshold.

But for medical child abuse specifically, I don't know the numbers in terms of physical abuse and child sex abuse, but like for medical child abuse specifically, it is not easy to to get a report followed up on.

So it's just totally, there's no data to back up anything they're saying.

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All right, so I wanted to segue.

You all listeners can peruse this website at your leisure if you would like to see what we are talking about.

And

Godspeed, brace yourself if you decide to do that.

I want to talk about a thread that I decided to pull at when I was trying to look at who appears to have created this website.

And I don't know actually who created it.

It's not specifically attributed, I don't believe, is it, Bex?

It's linked to it multiple times.

It's linked to this.

Okay.

It is on their web page of groups that they're affiliated.

Like, you know, it's, it comes up multiple, in multiple.

So it's clearly affiliated with this person and this family and they link to this as a resource um and so i think there's every reason to believe there's a strong connection between the two i do not know who like owns mito.org i don't know who founded it that they don't include that information so um also you know just just a just a word to the wise if you're looking at these kind of organizations if you're looking at any 501c3 uh that information should be extremely transparent they should say who and why and how it was founded.

Those things, there's no reason to obscure any of those, I suppose, unless you believe that you're the target of a conspiracy.

So I guess maybe that's why.

I don't know.

Anyway, I won't speculate.

I don't know, but this information is not readily available on the website.

So the organization that it linked back to was this organization called Jonah and the Whale.

So I wanted to talk about this website.

And just, I think, you know, this whole show at this point obviously comes with a huge trigger warning.

This is very disturbing.

When I found this, I really had to like walk away and go touch grass because I felt like I had stumbled upon something extremely sinister.

So I'm just looking at the webpage here, and so this is, it links out to a website several times called Jonah and the Whale Foundation, helping families of disabled and chronically ill children.

This is a fairly spare website.

It looks like it was created quite a long time ago.

And this links back to an older case, so that is probably plausible.

So this is just a little bit about what it says about what they do.

So when a family is dealing with a complex disease or perplexing disability, the stress and frustration with those involved can be overwhelming.

The challenge of effectively communicating your child's needs while maintaining clarity with physicians and educators is the juggling act that most parents encounter.

I suspect there is some truth to that statement.

So it says, Jonah and the Wales Foundation's mission is to support families educationally, medically, and resourcefully throughout the United States, Canada, and beyond.

It supports families by helping them understand the tools to navigate medical and educational community, et cetera, et cetera.

So pretty, like pretty broad in terms of mission and what it's there for.

So how does this relate to mitochondrial disorders and why is that connection?

So I looked into

the parents who created this.

They are a couple called Manny and Ron Tammany Loomis.

It's a hyphenated name and apologies if I have said it wrong.

So this couple claims that they were falsely accused of medical child abuse.

They had a child who died at the age of three in 2001, Jonah, who's the one that this website is dedicated to.

It's unclear what this child died of.

They claim that he, in an interview that I found, they claim that the child had a whole constellation of issues and things wrong with them and then died of heart failure.

They appear to blame the doctors for not finding the heart failure.

Again, I don't have any source documents to work from, just their comments.

So very unclear, but they had a child that allegedly had some constellation of rare conditions and died very young.

They were investigated for their other two children, who

at the time of the investigation both allegedly had mitodiagnoses and were in hospice care.

The thing that, again, according to this interview, that flagged the doctor's concern was that both of the children were on TPN nutrition, which is when you're getting nutrition through an IV.

Again, something that comes up very frequently.

They also mentioned that the kids had feeding tubes.

So I assume this was a long progression of feeding tubes.

And the hospital staff, I believe the nurses, noticed that the children were eating normal food.

The parents claim that this was something they did with the doctor's approval.

Again, we do not hear from any of the doctors.

I assume they're bound by HIPAA and couldn't speak even if we could find them.

but said that because they had been told, according to them, they had been told that their children were at the end of their lives, both of them, that they did not want to deny them the simple pleasures of the foods they loved, like potato chips.

Now, Dr.

Becks, on its face, is there a reason that a child would be on TPN nutrition and eating potato chips?

It's a stretch.

I mean, it becomes a bit of an ethical question where we've had, you know, these...

these families who say, you know, we understand the risk and we still want them to taste something that they love.

It becomes very difficult.

But truth is, the physical ability to eat a potato chip

is questionable.

I mean, I've had patients tell me things like, oh, you know, I ate a whole this in one day.

Or they come in and they just talk about like their favorite foods and their favorite restaurants and their favorite this.

And you kind of can feel the tension in the room because it's like, They've been on TPN for five years.

Like, how would they remember going to these, right?

I mean, like things just start to unravel a little bit that this is a kid who probably love does love eating at mcdonald's but if they say that why are they on tpn i mean it's it's just it's questionable so can you just briefly and i think a lot of listeners will know about this we've talked about these treatments before because again they're utterly ubiquitous in these cases in terms of G-tubes surgically implanted in the stomach and or you know TPN nutrition.

So with those escalations, I mean, in my understanding, once again, famously, not a doctor, in my understanding, TPN is fairly down the line in terms of interventions for feeding and that this is usually for children that are not even able to absorb nutrients via a G-tube, right?

Like this is the next escalation.

Because if they can't eat by mouth, then they try a tube.

The tube feeds the stomach.

It still doesn't work.

Then we can actually feed the intestines with a different type of tube.

That doesn't work, or there's a risk to doing so.

So for instance, you just had a big abdominal surgery and your gut just isn't ready yet.

You use TPN.

TPN is often a bridge, meaning like to get back to some type of feed through the stomach or the intestines.

Kids with very severe conditions where they don't have enough gut to absorb all this nutrition become TPN-dependent for life.

The thing is, TPN has risk factors.

TPN will cause liver damage over time just because our bodies aren't meant to be fed, you know, in this way

and can cause liver failure actually at some point.

And it's just having a line that can get infected, that can cause sepsis, that can clot and cause blood clots.

There are so many risks to it that you take it under very strong consideration.

Is there any other way to get there that does not involve TPN?

And I think,

again, those kids, the other thing is, if a kid is not eating, and I think I said this on a previous episode, if I don't eat for a week because I have a really bad stomach bug and I go to eat the day after I start feeling better and I eat a big burger and french fries, I might throw up again because my stomach just is not ready to take on that much.

Sometimes, after we're sick, like milk products don't sit so well, right?

So, the argument would be made: a child that supposedly has not eaten by mouth or tube in five years comes in and we start to feed them.

And they are so excited to eat that they eat the entire plate and then ask for extra snacks and there's no vomiting and there's no diarrhea.

That proves to me that the child was eating.

It's not just that they're saying they couldn't so they didn't feed them for five years.

No, they were feeding them.

I mean, this child was eating because there is just no way for your system to do that.

Right.

And I mean, I cannot tell you.

How many times I have read in these reports.

I mean, this is the, and this is actually, this is there, there has been a study at children's about the ubiquity of G-tubes and

G-tubes and G-J tubes in these cases.

And they are, you know, again, sort of anecdotally, having looked at a lot of cases, extremely common.

So both on the data side and on the anecdotal side.

You know, so many of these.

That is one of the most common interventions.

And then one of the most common things that's reported as a red flag is that like, to your point, they see a kid eating a cheeseburger and they're like, why is this this child having all these interventions and escalating interventions when I've just watched them eat by mouth in a way that is not plausible with the symptoms that this parent is describing?

And so, that is obviously, I mean, according to the parents, that is what happened in this case.

And

the language that the mom uses in this interview is very striking.

You know, she says the hospital was out to get her, and that's why they did this.

And it's sort of this conspiracy theory style style

conversation.

And I mean, I again, and very interestingly, a young Mark Feldman is sitting next to her in this interview.

So that was a wild thing to see.

Mark Feldman looking young.

And as I'll get out, this was way back in the early 2000s.

So in fact, we were all much younger then.

And I almost sort of got shivers like watching him sit next to this person.

And, you know, again, I have not done a super deep dive into this case.

I have not gotten any source documents or anything like that, but I have never quite seen such an alarming collection of red flags as this story.

You have a child that died already under mysterious circumstances.

You have two children with alleged mito that are both in hospice and both on a very, you know, serious intervention from the feeding side.

This is very alarming.

And the fact that her other child died, I think there was every reason to believe it sounds like that these children could have been in very serious danger.

I am happy to to report that as of a quick Google, these two children are both alive and they appear to be thriving.

I saw sort of social media, they

did well in school and all kinds of things.

So it sounds like there was ultimately,

I don't want to say there was a good outcome because I don't truly know how this all played out, but very relieved to see that both children are still alive.

And again, you know, I don't know the series of events here, but if this was headed where it appears it could have been headed, then we can safely assume that that intervention, even if it was not successful in permanently separating the children, was successful in possibly preventing

a much worse outcome.

So yeah, that story was very disturbing to read about.

The connection between this website and that family is very disturbing to read about.

And unfortunately, that points to

that points to my worst fears about who this website is actually for.

And actually, I'm trying to pull it up, but for some reason, it's not logging me in.

But

there's a connection between that family and the Peletier case.

Because

I think they're mentioned or they were possibly going to testify.

I can't remember, but for some reason, it's not letting me open the article, but that this case came up during the Peletier case.

Because that's not surprising because it is a Mito case and it was, you know, even I was sort of horrified watching the way that these news anchors presented this case because they were like well that's terrible that that happened to you and etc and i'm like this seems so obvious to me that this is a case of

that this is medical child abuse or or at least like there's so many red flags that it is not anything like it deserves some looking at and i think like you know again like the media literacy around this form of abuse and mark feldman was you know sitting there doing the lord's work like he's been doing all decades and decades now of trying to educate people about what this is but the media literacy around this topic is so low it was lower then for sure 20 years ago you know talking to my colleagues who were at it then I was in college 20 years ago so I was not you know and this this had not gone down in my family yet so it's it's gotten better over the years but um yeah it's really horrifying because I just the the assumption that this isn't real or that parents aren't doing it or that if they got away with it they're you know been falsely accused it was really chilling to

watch this interview.

And I think it goes to this whole, like, they all are ending up in the same circles or on the same websites or on the same links.

They're sharing notes.

I mean, they are.

That is what this website appears to be.

Not to say that every single person who's worked on this website or who is part of this support group or who has gone to this website is a perpetrator.

Of course not.

But

that is a function that I have absolutely no doubt it is serving is as a resource for perpetrators.

And I hope that's a good idea.

So if that is unintentional, if that is unintentional, then those creators of this site should be very aware that that is what they have unintentionally put out into the world.

Correct.

And I want,

again, I want parents to be

advocates for their children.

And I want them to have information about how to be a parent of a chronically ill child.

Like it is not easy.

And I can tell you, I have some that should lead that group because they're amazing, you know what I mean?

And they have a way of interacting that they absolutely come in and tell me, you know, my kid and you know that if we start feeds too fast, they're going to vomit.

And why even do that?

Let's go slow, you know, and I don't see it as being pushy or forcing my hand at all.

It's a conversation, you know, and we're talking about.

knowing this child.

And again, as a physician who's been now in the same place for 12 years, I also know the patients, patients, right?

So, I mean, that is, they're just taking all of that away.

Like those relationships that I've built with these families over time that we trust and respect each other, they're really just acting like that can't possibly exist in one of these cases.

And that does, that hurts my heart, honestly.

Right.

I mean, I think we can make space for the fact that there are bad doctors and there, of course, there are doctors that have bad bedside manner and there are doctors that are dismissive of certain parents and there are doctors that have all of the regular biases and flaws that you know every other human does and you know behave accordingly and there's no reason to believe that that's most doctors doctors are not out to get parents of chronically ill children that doesn't make any sense that is not why people go into pediatrics it's just

it is it's offensive and i think people

need to look at sites like this and groups like this that are so explicitly giving advice on how not to get investigated for medical child abuse.

Imagine if you stumbled across a website that told you not how to not get investigated for child sex abuse.

Yep.

Who would you think that was for?

Would you think that was for?

I mean, I can't even truly speculate.

Would you just be like, well, you're not going to be able to do that

who's trying to get anything else?

Exactly.

I mean, perfect.

Yeah.

Perfect analogy, right?

Like you could see a site that has like, yeah, advice for single dads, advice for dads in court, right?

Like there's

sure enough, there are those sites that have, some of them do have, I mean, there's a whole connection with like the men's rights movement that is actually pretty problematic.

But like you could see a site that was like for dads, here's what single dads do, you know, like, and here's like how to better communicate with your ex-spouse.

Here's how to better co-parent.

Here's how to navigate some of the systems and some of the inherent biases that might go, whatever, all that stuff.

That could be perfectly benign.

If there was a site where all of that advice was couched in so you don't get falsely accused of molesting your children, you would have questions about who that was intended for.

Yes.

And that's what we're talking about here.

And it's so, it, it just, it sets us up to fail.

It sets families who are actually coming in with, you know, good intention and true concerns to fail.

It breaks the whole, you know, bond between patients and families.

And it also, it negates the ones that really do.

I mean, I said the family that got taking resources away from families that really have and dishonoring their experience, dishonoring that loss, exploiting that loss, exploiting that experience.

I mean, these parents of legitimately sick children do not want to be in the room literally or, you know, figuratively with abusive parents.

Because

they don't deserve that.

Yeah.

I mean, I still remember, it was actually the case that I wrote that I, um, that switched me back to PEDS.

I remember being in their room and a commercial came on TV about the news that night where there was a case at the hospital where we were of a child who was severely abused and had, and that the parents were being, had been arrested.

It was this terrible case.

And, you know, my, the parents of my patient turned and said, why do some people get to be parents?

You know what I mean?

And here they are suffering through.

the worst days.

I mean, they were losing their child.

And at the same time, they knew it was genetic so that they had a risk if they ever had another child child of it having this condition and they actually said to me does that kid need a fan like need a family or need foster parents right so again these good people who are going through and again mitochondrial disease is in my heart because of that case So I sometimes struggle with being a little offended because of what I know it can mean.

And again, they were so appalled that there are parents that don't just love their kid and want them to not be sick and want them to know they're going to kindergarten and to school and all the things they never got with their child.

And I think that has stuck with me.

And maybe that is actually why I, why I find myself so passionate, because our bond was like nothing, you know what I mean?

That what we went through was life-changing for me, literally.

I mean, I went back to pediatrics because of it.

So the fact that they're saying, you know, that I just walk in with this eye of wanting to, you know, break up these families and accuse them of things.

It's just not true.

And bad doctors aside, you cannot work in a pediatric hospital every day of your life and have that be your goal.

I mean, it just would not be compatible with

you.

Yeah.

It just doesn't.

It's not, it's not a human behavior that makes sense.

You know, what I think is interesting about mitoauction.org, despite it's just like, it's not the only one.

I mean, there's many sites out there like this that are,

this is a particularly blatant one, but there's a whole world of these websites where they are geared towards perpetrators, I believe.

And, you know, I really have my thinking about people who aid perpetrators in their abuse has shifted over time.

In the beginning, and I think this is just my nature, I am not a, I am an optimist about people.

How that has survived many of my human experiences, I do not know, but I still am.

I still am.

I give people the benefit of the doubt.

I am a person who gives people a lot of grace.

I just almost almost never assume bad intent.

And when I first saw these stories about, you know, written by Mike Hicksenbach and Taylor Mifenderesky, who is the local reporter who collaborated on that story, when I saw the piece in New York magazine about Maya Kwalski, when I watched the movie even, I came at it from the lens of, oh, these people got it wrong.

They don't understand what they're talking about.

If I tell them, if I explain to them, you know, like, and not in an arrogant way, not in a like, just in the fact of like, oh, I've devoted now a lot of my life to trying to understand this, Like, oh, they'll change their mind.

They'll understand.

They just don't know.

They don't know.

They're looking at this through a certain lens.

They've been fooled by these.

I also know how manipulative these perpetrators are and how convincing they can be because I was subject to that.

They've been fooled.

They just don't know.

They don't understand what they're doing.

I don't think that anymore.

I don't know what their motivations are, but it's not.

It's not just ignorance.

It's something else.

And I have to say, I feel like we need to be much harder on that kind of behavior because

when I think about how a lot of these on social media or, you know, those pictures get picked up by the news, so many of these outlets put all these pictures of the kids in medical settings and all these pictures.

Like, I have seen that picture of my niece next to a Coke bottle showing how small she was when she was born numerous times in numerous national media outlets.

That does not belong in the paper.

That doesn't belong in the paper regardless of whether it's an abuse case or just you're telling telling a feel-good medical story or whatever.

That is porn for offenders.

Do not print that.

You do not have that child's consent.

That is a massive violation of their privacy.

And you are participating in the abuse.

You are co-signing their abuser's story about their health and what happened to that.

And you are making it harder for them ever to climb out of that psychological hole.

So you are not just a sort of unintentional collaborator.

You're participating.

And when someone has told you, i.e.

me,

lengthy emails to all of you, to New York magazine, to Mike Kixenbog, to Taylor McFenderesky, I've told you.

I've told you what you're doing.

You cannot say you didn't know.

And it's the same thing with these mitoaction.org and these like, you know, organizations that are protecting and aiding these abusers.

You are participating in the abuse and exploitation of a child.

You are implicated.

And

it's horrific.

And we need to be a lot more critical of these stories and understand what they are really doing.

Like there is no world in which you should be posting pictures of children in a medical setting.

I don't think parents should put those on their social media.

I understand that not everyone agrees with that.

I don't think every picture of a child in a medical setting is exploitative or abusive.

I think it's a bad idea just because the internet.

And I don't think people often realize that the pictures that you put on social media any media outlet can pull those they do not you need your permission talk to anybody who's in the public eye you will send you know for instance I do a TV appearance.

I will send them pictures to use.

They will use those pictures or they will just snag things off my Instagram.

I have no control over that.

So you don't own that content once you put it on your social media.

So I think part of this is just like an awareness thing.

And I don't think most parents that post pictures of their children like, you know, mean to do that.

But I don't think those pictures of children in medical settings, they can also be used by people who are pretending that those are their sick children.

So like there's a lot of awareness that needs to happen here, but like it is so wrong.

And I think this is something that I hope like in 20 years from now, we look back and go, oh my God, I can't believe that publications used to publish these stories with pictures of these poor children that were taken without their consent and being reprinted without their consent with tubes coming out of them and XYZ.

I think it's just morally repugnant.

And I think if the website was saying like safety on social media, right?

Like your child is in the hospital.

These things are happening.

Be aware, right?

I mean, like that site on social media and online interactions, like that's what I want them to say.

But instead, they start in light of the frequent use of social media used in child protection cases.

Like, what are we talking about?

You know what I mean?

Again, it's there is safe social media use and there is smart social media use in all cases when you have children.

You know, and it's a decision you as a parent 100% get to make.

But understanding that and knowing what that can mean and reminding you that there are not good people out there.

I mean, I've had people, you know, post like their MRI results and stuff, like true patients who have conditions.

And I've had patients bring in like, you know, copies of someone else's MRI, you know, because there's no name on it.

And they say, oh, this is what they gave me.

And it's like, no, that's not what they, you know what I mean?

So just be aware.

It is the same as any other thing that you're posting on social media.

Yeah.

And I just realized as this came out of my mouth that there is a huge caveat to what I was saying, which I was saying, don't post pictures of kids with medical equipment, whatever.

Okay.

I recognize that children have also legitimate disabilities, right?

And we don't want no visibility for children with disabilities.

Show your GTU, man.

I mean, yeah.

So I think there is like, so that's a significant caveat.

Now, again, I don't think that we should be putting pictures of our kids on social media, kind of period of end of sentence.

That's a personal choice that I made.

I think, you know, bex you put pictures of the boys on your social media sometimes personally i don't think that it's like a you know zero sum game so i mean i think there's there's some wiggle room right there right it's like we don't like a 10 year old who's in a wheelchair or you know that has a g-tube like you don't want to have no visibility for that because you don't want kids to feel othered and and strange and like that that's a shameful thing so i think like obviously i see this through a certain lens and that's what i was responding to however i am talking about like an extreme case and i think journalists in particular not who are covering just like i mean i think it can also also be harmful when they're being covered in a feel-good context, right?

And like, here's this disabled kid who's getting a make-a-wish trip again.

Make a wish comes up in like every case I've looked at, or it's doing a like, you know, a hero for a day or whatever.

Like, those can also be exploitative.

I mean, I think like sharing images of kids is very dicey, and you have to be very careful.

But I think specifically, the journalists that share these stories about quote falsely accused parents and they are printing a whole bunch of pictures of the kids in these extremely vulnerable positions.

Like that is not okay.

You can describe the things that have happened to this child.

You do not need to include those pictures.

Or even Beata's blogs, right?

With Maya, when she was in the coma, like she had no choice.

She was absolutely sedated.

That was not her smiling for a photo, her dancing in her wheelchair.

That was her in a coma.

And she was like, there were more pictures of that than anything else.

And I redacted those pictures when I

wanted to put out the blog.

And I just like, you know, and there were some other pictures within the blog of Maya in medical settings that I didn't redact.

And obviously there's been a bajillion images of Maya in medical settings that have been shared.

Yeah, you're not going to be that right, but I'm not going to, you know, I think there was like a, there was just a line for me.

I was like, I'm not, I have not seen pictures of her.

I think there was maybe one that was shared in trial of a picture in her in coma, but I'm like.

It's one thing to sort of share stuff that's already come up in the trial, like, but I'm not going to put images out into the world and be responsible for that.

You know, again, I didn't put them into the world, Bianca did, but like, I'm not, like, I just couldn't.

I was like, I'm not putting 11 pictures of this child in a coma.

So, anyway, I got a little off track there, but yeah, obviously, I've got a lot on my mind.

And that is what these subscriber episodes are for: are just free association and the occasional rant.

And, Bex, thank you for joining me.

Is there anything else you want to say about this, about this particular website before before we log on if you have looked at this if you wish to go look at it do let us know what you think um maybe bex and i are overreacting that's possible i don't think so but uh i would love to know i know a lot of you also are doctors and some of you are in law enforcement hi detective mike uh and you know i'm curious to know your thoughts on on this as well if you want to take a look And I think one other piece that we didn't mention, but just for those who want to go down rabbit holes, is that look at the medical advisory committee for this website because it is Richard Bowles.

It is Mark Corson from the Palettier case.

It is Frances Kendall, who is the one who diagnosed Maxine Eichner's daughter.

For those who've listened to all of our episodes, the names start coming up multiple times.

And again, I read some of the backgrounds on some of the other doctors and I was floored.

I mean, they sound like they have amazing backgrounds and good research, but those names coming up, it's just

notable.

Yes, it's just worth noticing.

Yeah, well, we will talk about Dr.

Bowles specifically.

Maybe we'll do that in the next episode because Dr.

Bowles is,

he's in his own category.

Not he's in his own category.

There's other people in there with him.

But I think Dr.

Corson is someone I have more questions about.

I don't know about the other doctor that diagnosed Maxi Neitner's daughter, but I think there is like, I think there's room for both things to be true.

I mean, again, Maxie Neichner, I have no idea if this is like, you know, again, I don't have any access to know whether or not this was the right diagnosis how they got to this diagnosis why she feels so strongly about medical child abuse i have many questions but with dr bowles i mean he is such a repeat customer in terms of showing up giving testimony for medical child abuse cases where yes literally every child including including my niece by the way um has mitochondria he testified on behalf of my sister

and does not have medical child abuse like it's not just that they have mitochondrial disease it's that it's not right yes and that this you know really clink system I don't know.

I mean, it's some combination of, you know, there very plausibly could be a very big piece of profit motive.

These are things that tend to pay very well.

Defense expert testimony.

I mean, Dr.

Elaine Neuberger, we know, got paid, I believe, $160,000 for his deposition that he gave in the Kowalski case.

I mean, this is not, it's not chump change we're talking about.

There's no problem with experts being paid for their testimony.

They're doing work.

They deserve to be paid for it.

But I think you cannot discount a profit motive here, and especially for those that run those all-cash clinics, which Dr.

Bowles also does.

So I think you have the Dr.

Bowles, you have the Dr.

Kirkpatricks and those.

And then I think you have some others where they may be a doctor that is very well trained and legitimate in most ways.

And then for some reason, just sees things this way, just has that lens.

I mean, it's sort of the Mike Hicksenbog conundrum.

I would love to be able to say Mike Hicksenbach's a hack.

He's just not a real journalist.

He doesn't do his due diligence.

That is not true.

Mike Hicksenbog is a, by all accounts, a very real journalist.

He has been nominated for a Pulitzer Prize for some of his other work, not for the medical childhood abuse stuff.

But I mean, he has every marker of being a very legitimate journalist.

Why he covers it this way, I don't know.

That is, those are the biggest conundrums.

You know, goofballs like Dr.

Kirkpatrick, that's like, he's kind of in another category, or just like, you're like, you're way outside of the sort of established science and everything else.

And like, you're just not, like, you're not really that credible, you know?

And then there's these other doctors and these other reporters that really do appear credible otherwise.

And those are the most confounding and the most fascinating to me, which is why Mike Hicksenbog just sits on a stool rent-free in my brain 24 hours a day, in case that has not become clear.

And I think it's because like that's your path.

It's the same way for me with these physicians, though.

I think it's because it's our world, right?

I mean,

you're a writer, you're a pod, you know, you have the podcast and your heart is in

the truth,

you're doing such an analogous work.

Like I don't, I don't really refer to myself as a journalist, but I mean, I'm doing that same work, right?

I'm trying to figure out what the story is and I'm trying to, you know, I'm looking at primary source documents and I'm interviewing people.

I'm doing the same things that he did to put together that piece and how he has come to such different conclusions, which I sort of believe in his case are genuinely held.

I mean, I don't, again, like maybe that's just because I just never assume bad intent, but I kind of believe that he believes in his work.

I don't think he's sitting in the background.

I mean, he's, again, he's a relatively, you know, he's an extremely reputable journalist.

He's a dad.

Like, I don't see him sort of in the background in this Machiavellian way being like, here is how I will make my name for myself, you know, and he's covering all kinds of other things.

Like, he doesn't need to do that.

So I don't know if it's some combination of he got a narrative and that got hot and he sort of like just decided to follow that because that's where he felt like the story was.

I mean, I don't know.

I can only, I can really, I want to like sit and have a beer with Kirkpatrick or with, you know, Shopra or any of these people.

Like I want to see them in the real world.

Like, do they hold up this narrative?

Yeah, I mean, or even just like off the record, like, just to satiate my own curiosity because I'm just like, how did you get here?

Like, how did you want to know?

Again, it's like none of them will ever talk to me.

I know.

Unfortunately, I'm a known enemy combatant at this point.

So, like, I think my chances of getting any of them to say, I will keep asking, but I, or they could talk to someone else, like just anybody to ask them real questions.

I just, I, my curiosity is bottomless.

I I think that's what's so interesting, even about something like bitoaction.org, because I think that there are some like stops along the way of people who are probably trying to do something positive and some doctors that may genuinely believe they're helping a community that has been disenfranchised.

And I think this is what is always fascinating to me in my estimation.

And I'll just talk in the personal, you know, because of what I, this is what I believe about my sister.

But one of the first questions that I asked Dr.

Merck Feldman about Munchausen by proxy phenomenon and about the psychological piece of it is: do people who do this know that they're lying?

Or are they suffering from delusions?

I frequently thought that my sister seemed so convinced of the reality that she was presenting that I thought, like, well, maybe she is confused.

Like, maybe she just doesn't, maybe she's sort of lost track and she does really think these things are wrong with her kids.

And that's why she's doing this, right?

This is a really common misconception.

And he told me, like, no,

this is a conscious behavior.

It's intentional deception.

Yes, there's a deep level of denial and compartmentalization and kind of all these other things, but like they know what they're doing.

They know right from wrong.

And it's very important for people to understand.

So I frequently think with my sister, like here Megan and I are on this opposite sides of these topics.

She's now doing medical forensic work for the public defender.

So she's working on other cases.

So we've taken up these sort of like opposite roles.

And like here we both are on opposite sides of this case saying the opposite thing.

She says she's falsely accused.

I say I don't believe that was a false accusation.

I believe that there is tremendous evidence that she has been committing this abuse.

And

we both both know the truth.

We both know the truth at the end of the day.

She and I alone in a room, I believe we both know the truth.

There's a whole bunch of other people in between that have been either supporting her or not that believe, question mark, how much does her husband believe that this was all a conspiracy and a lie?

How much do his parents believe?

How much do the journalists who've sympathetically covered my sister believe?

what she's saying because i think like yeah it's just sort of a fascinating component if the site was really started by someone who is an offender, are there other people who got involved who don't understand that that's what they're doing?

I think that's probably pretty likely.

Are there other people who are supporting their work that don't understand that that's what they're doing?

So yeah, there's a lot of confusion in between, but it's always fascinating to me that the perpetrators themselves know the truth.

They are not confused about this.

They know the truth.

They are willfully deceiving these other people.

And I think that's the hardest piece to get to even as a physician or when I'm talking to like my residents and my students is end of the day, I think this is why maybe I am so invested or that I am so willing to kind of go so deep into this is it is one of the hardest things I think as a human being, as a parent, as someone who has friends who are parents, right?

Who knows a child, anything that it could ever get to that point.

And I, I mean, it's honestly, it, it makes for some lost sleep over how this really plays out and how, like, to be a fly on the wall in their homes to see what it's really like.

And that's why I think Jordan's story is so important

because they can actually tell us what happened or what it was like.

Although every home is different, you know, we really want to know what it's like, especially as a pediatrician.

I want to know what these kids' lives are truly like because I think I haven't seen the tip of the iceberg.

No, and I think, you know, I think we're going to hear a lot more stories.

And I know that that's something that I'm interested in.

And I think that, like, it's one of those collective things where it takes those first handful of people to be brave and tell their stories.

And I know that, you know, there are other survivors that are doing that via their own channels online.

And,

you know, I think that's an incredibly brave thing to do.

Obviously, I can't cover every story that I would like to cover on my podcast, but I do think those survivor narratives are going to be such an important piece of things.

You're quite right.

Yeah.

Okay.

Well, thank you, Dr.

Becks.

I love how I was wrapping it up and and then I was like, and I know, we're still,

I guess I had a lot to say today.

Okay, well, thank you for joining us, all of you.

Thank you for hanging in

more than 90 minutes.

This is a long one today.

But yeah, let us know your thoughts and we'll be back in a couple of weeks to talk about our friend Dr.

Popples.

Sounds fun.

I'll be there.

Bye, Bex.

Bye.

Nobody Should Believe Me Case Files is produced and hosted by me, Andrea Dunlop.

Our editor is Greta Stromquist, and our senior producer is Mariah Gossett.

Administrative support from NOLA Carmouche.