Bridget Mildon - patient advocate for Functional Neurological Disorders

[Hutan]

Bridget Mildon created FND Hope International, and is very active in supporting the concept of functional neurological disorders.

She wrote about the experience that set her on the path of advocating for FND here
Mad in America: Turning patients into numbers

Imagine your life turned upside down with chronic symptoms like fatigue, stroke-like symptoms, brain fog, sharp chest pain, coughing up blood … and doctors can’t seem to figure out what is wrong. Then imagine your feelings when one of the doctors decides that this spectrum of symptoms is psychosomatic or “all in your head.”

I felt persecuted from the moment I was given a psychosomatic label. I found myself hostage to a diagnosis that I hadn’t even known existed: “conversion disorder.” Even though the diagnosis was hidden deep within my medical file under piles of negative test results, it seemed to reveal itself at each new doctors appointment or ER visit. This diagnostic code was now part of me as if it were a scarlet letter on my forehead.

I was trapped not only by my pain and debilitating symptoms, but also by physicians who didn’t know how to provide effective care. In my most delicate state of mind and body, I was authoritatively told: I must trust and accept a mental health diagnosis in order to be cured.

I began scrutinizing and searching for skeletons in my closet, looking for a reason, an answer, anything, which I hoped would lead to my cure. I found myself lost in a world of medical uncertainty. I was an average carpooling mom going about my life until a trigger was pulled and entrapment of my body began. And make no mistake: it is an entrapment, which doctors since the 19th Century have attributed to suppressed emotional trauma, despite a lack of medical evidence.

I was damaged after a neurologist pick-pocketed down through my deepest layers of self and rifled through all my emotions, confiscating the last ounce of self-respect I had left. This theft left my mind fearfully exposed in complete nakedness, silently crying out for emotional security and yearning for my doctor to provide me with a definitive care plan. I was then left alone with a “care plan” that amounted to little beyond the reassurance that my cure lay with psychosomatic acceptance.

Her experience and initial feelings are similar to many of us here. And yet her reaction has been quite different; she has been co-writing papers on FND with some of the strongest supporters of the BPS model.

Even medical judgment is subject to the fallibility of man. But many doctors refuse to embrace this understanding. Humility is instead overcome by hubris and impatience. The thick-file chronically ill become “problem patients” when their doctors feel inadequate and are faced with medical uncertainty.

I continually questioned my now vacant inner self: Who could I trust if I couldn’t trust me? In my journey to find the truth, am I avoiding it? As part of trying to answer such questions, I founded FND Hope, a non-profit organisation for patients diagnosed with Functional Neurological Disorder (an inclusion term for Conversion Disorder). FND is theorized by some physicians as deriving from the brain’s inability to send and receive signals properly due to physical and/or psychological precipitating factors. Again, in theory, symptoms are believed to perpetuate due to the neuroplasticity of the brain. However, research is needed to fully validate this model and define effective interventions.

While psychosomatic labels and mechanisms aren’t backed by medical science, we cannot deny the reality of mind-body connections either. Who hasn’t experienced the sudden sour stomach when they become nervous and upset? How else do we explain the many people who experience the physical impact of a panic attack? That being said, at the end of the day it is still unethical and dangerous to deny symptomatic treatment to patients on the grounds that the doctor doesn’t understand what they are seeing.

I find it quite odd and interesting that someone with a questioning and skeptical mindset, someone who could probably fit in well here, has ended up effectively campaigning for BPS proponents.

In my case, symptoms dramatically subsided once a doctor finally looked past my psychosomatic label and treated me for an autoimmune related neurovascular condition. I am often asked if I ever had FND. My current doctor, not a neurologist, can account for all my symptoms. However, I know enough to understand that I may have had some form of functional overlay. Had my original doctors not been “afraid” of medicalizing my possible functional symptoms then they would likely have been able to unravel my medical mystery many years prior.

 

[Peter T]

Is a big problem with FND that currently it is inadequately defined, so it is possible for people to pick their own meaning and for individuals with totally incompatible understandings of the term to simultaneously support it?

Bizarrely the author does not, in the above extracts at least, address fully the contradiction that the supposed treatments for FND have no reliable evidence base, whilst in her personal experience the treatment that seemed to help her was for an underlying biomedical condition.

 

[Ravn]

we cannot deny the reality of mind-body connections either. Who hasn’t experienced the sudden sour stomach when they become nervous and upset? How else do we explain the many people who experience the physical impact of a panic attack?

Lost count of how many times these and similar examples have been used as "proof" that a) the mind can cause symptoms and b) therefore the mind can also do the reverse and make symptoms go away. The implication invariously being that I should be able to think myself better.

Does anyone have any good short answers to that? Mine always end up as an unconvincing long-winded muddle.

 

[petrichor]

Lost count of how many times these and similar examples have been used as "proof" that a) the mind can cause symptoms and b) therefore the mind can also do the reverse and make symptoms go away. The implication invariously being that I should be able to think myself better.

Does anyone have any good short answers to that? Mine always end up as an unconvincing long-winded muddle.

The argument people seem to be making when they say stuff like that seems to be "This is possible, therefore you should treat this as true". A lot of things are possible. ME/CFS could be psychogenic or psychoperpetuating, or it could be due to aliens poisoning the water supply (or plenty of other more plausible things). You need good evidence for those things though

 

[cassava7]

While psychosomatic labels and mechanisms aren’t backed by medical science, we cannot deny the reality of mind-body connections either. Who hasn’t experienced the sudden sour stomach when they become nervous and upset? How else do we explain the many people who experience the physical impact of a panic attack?

It seems strange that someone with a supposedly skeptical view would bow in to simplistic psychosomatic explanations of chronic symptoms, when they themselves note that supporting evidence is lacking.

The examples that Mildon uses are acute events, where it can reasonably conceived that the brain perceives an immediate threat and sends a signal to the body. Although I do not know the literature on physiological responses to acute stressors, I assume that plenty of evidence is available and provides mechanistically sound explanations -- and presumably, simple historical experiments on rodents may apply here, for once --.

However, there is no plausible reason to think that an acute stressor would transition into a chronic one, or that a psychological "chronic stressor" (presumably unconscious to some degree) is present in what is labelled as "medically unexplained syndromes" (among which FND). There is, instead, contradicting evidence from the failures of many trials of various forms of psychotherapy aimed at addressing supposedly perpetuating stressful illness-related thoughts.

Regression to the mean also implies that for an acute stressor, the physiological response fades in time -- as in the examples above -- instead of being perpetuated.

Had my original doctors not been “afraid” of medicalizing my possible functional symptoms then they would likely have been able to unravel my medical mystery many years prior.

This testimony is all the stranger given that proponents of the biopsychosocial model, MUS and FND strongly advocate against "medicalization" and "overinvestigation" when it was required to unravel Mildon's disease.

FND is theorized by some physicians as deriving from the brain’s inability to send and receive signals properly due to physical and/or psychological precipitating factors. Again, in theory, symptoms are believed to perpetuate due to the neuroplasticity of the brain. However, research is needed to fully validate this model and define effective interventions.

Given that Mildon has been working closely with BPS and FND researchers for a number of years now, has she not been disappointed by the quality of the evidence they have brought forward?

For all her difficult medical encounters and her diagnostic woes, one would not have expected Mildon to advocate for research into vague explanations of FND, such as the now fashionable concept of neuroplasticity, but rather for precise biomedical investigations.

Imagine a world where we allow for medical uncertainty. We allow medically unexplained symptoms to be part of our medical puzzles without patient apology and without doctor frustration.
[...]
Researchers and practitioners will not find answers to questions they fail to ask. They cannot find medical cures when they refuse to acknowledge symptoms of illness, or when they dismiss their patients for failing to fit medical stereotypes.

I am honestly confused. BPS and FND proponents are not proponents of medical uncertainty, but of psychosomatic explanations to as yet biologically unexplained conditions. BPS/MUS/FND research shows that they fail to ask novel questions, and instead perpetually rehash the ones that fit their theories in a myriad ways (e.g. different forms of psychotherapy and exercise).

If anything, the motto that they have devised for FND highlights their confirmation bias -- "it's a software problem, not a hardware problem" --. It is the primary explanation that they "educate" patients with as to the etiology of their condition.

Indeed, they do not dismiss their patients for failing to fit stereotypical presentations of biomedically understood diseases. Rather, this is their selling point; patients are referred to them when biological tests turn out negative. But in turn, to most of the medical profession, this directly implies that patients do fit the medical stereotype of a psychosomatic diagnosis. This argument from Mildon bites its own tail.

 

[Invisible Woman]

I wonder how she would feel if she had been sent for IAPT instead of finding herself in front of a doctor who could treat her? Chances are that's what would happen in the UK. So, if she had a choice, would she want an FND or MUS diagnosis with whatever "treatment" that entails and remain ill or a doctor who could treat the underlying pathology? Not everyone is going to have the luxury of both.

It's very easy muse like this when you have found a cure. It's puzzling when it's a case of I tried treatment x and it didn't work but treatment y did and then go on to laud treatment x for other people.

 

[Keela Too]

Lost count of how many times these and similar examples have been used as "proof" that a) the mind can cause symptoms and b) therefore the mind can also do the reverse and make symptoms go away. The implication invariously being that I should be able to think myself better.

Does anyone have any good short answers to that? Mine always end up as an unconvincing long-winded muddle.

My thoughts:

Short version:

As I see it, there is an evolutionary advantage to having an instinctive survival response to danger and that survival response will produce certain typical symptoms that we can feel/observe. This survival response prepares us to take swift action.

It seems we may partially influence the intensity of our survival response after it has been initiated. So by conscious thought we may consider the implications of the danger encountered and so, as the danger is assessed, the response level can be somewhat corrected. This affects the intensity of the symptoms we feel. We can also imagine a non-present danger, and produce a physiological response to the thought of danger.

However symptoms that are produced by disease or physical harm are different. Disease or injury requires rest not action, so evolution favoured the individuals who experienced symptoms that encouraged them to rest and recover during these times.

Putting on my biology teacher head: Surely if the ability to cure disease or injury through conscious thought had been possible, then evolution would have ensured that we all had that survival-altering ability long ago.

Or maybe that is exactly what rest is?

*****

Longer version:

Evolution requires individuals to survive long enough to breed, and the ability to respond quickly to danger assists survival. When danger is detected the body responds so that is can react quickly to escape the danger.

Sensory information leading to such a response is also delivered to the conscious mind, but the primary physiological survival response is instinctive and not “considered”.

Individuals that can see/hear/sense a danger and react quickly to that danger stimulus are more likely to survive than those that don’t react sufficiently quickly.

So as an immediate danger is noted, eyes widen, alertness is increased & blood is prioritised to the brain and muscles, whilst less blood goes to places such as the digestive system. And after the immediate threat has passed, it can be advantageous for the body to get rid of the half digested (and possibly festering) gut contents. We don’t have conscious control over these things. They feel like fear!

This survival response also happens in animals with more primitive brains, so it’s not linked to having a higher brain (or a “mind”). However higher brains can recount events on demand, and apparently this thinking can also induce some of our primitive physiological responses.

So were I to start recounting a scary event in my life, I would no doubt be able to increase my heart rate etc. as the more primitive part of my biological system would interpret those thoughts as a real life stimulus.

We may also have some rational ability to enhance or dampen the primitive survival response, but as I understand it, this is downstream of the initial primitive response. (Perhaps CBT is helpful here.)

I suspect we can really only nudge our physiological responses slightly, because all those visceral, primal, responses evolved as survival mechanisms, and ALL of our ancestors were survivors. The survival response is in our DNA.

Enhancing or dampening survival physiology is entirely different to curing symptoms from disease or injury.

When we are injured or pick up a disease, the body has an internal danger that needs to be dealt with in a different way. “Flight or fight” is no longer an appropriate response. It would not be a good idea to spend energy running away when we simply carry disease with us and it would be foolish to carry on walking on an injury making it worse.

Different survival mechanisms kick in for disease and injury. Now it becomes better to “lay low” and recover, and for the body to spend all available energy on healing. This sets up a situation where over evolutionary time the individuals who experienced symptoms that encouraged the correct resting behaviour, end up surviving better than those who continued on as if nothing had happened. The symptoms experienced are what produce that correct behaviour.

Injury and disease symptoms are there for a very good reason. The symptoms are the survival mechanism.

Finally, I’m pretty sure had our higher brains been able to “cure” us of diseases and injuries through though patterns alone, then we would ALL have evolved that innate ability long before civilised society appeared.

Rest is a survival mechanism in my view, and the symptoms of pain, exhaustion, and so on are there because over evolutionary time those individuals that experienced such symptoms (when diseased or injured) survived better than those who didn’t get the message to rest.

Biology knows best!

PS… I was a biology teacher, so this is based on my understanding of biology, evolution and physiology. I’m not a doctor. So this is all just my semi-informed opinion.

 

[Mithriel]

She is ignoring the fact that many recent FND papers start by saying that it is a new, more precise name for conversion disorder and hysteria. I keep meaning to get a reference and keep it to hand it is so frank.

The way Jon Stone lauds 19th century neuropsychiatrists and regrets that it has taken until him to revitalise their concepts of disease as the mind ruling the body also makes it clear they are fitting hysteria into modern understanding of the brain.

It is hypocritical to be pushing a concept which precludes people being given the chance to be treated properly when she had that privilege.

FND is theorized by some physicians as deriving from the brain’s inability to send and receive signals properly due to physical and/or psychological precipitating factors. Again, in theory, symptoms are believed to perpetuate due to the neuroplasticity of the brain. However, research is needed to fully validate this model and define effective interventions.

This statement I will keep. It highlights the way they present a theory that has absolutely no evidence - can psychological precipitating factors affect the brain's ability to send signals? They offer no mechanism. In keeping with their admiration for 19th century medicine it sounds like a woman giving birth to a baby with a dog shaped birthmark because she was startled by a dog during pregnancy.

Even I can do better. "Psychological shock causes people to hold their breath which triggers low oxygen in the brain so the brain builds a protective network to prevent it happening again" Nobel prize worthy!

I use far too much energy on these dangerous idiots.

 

[Snow Leopard]

Her experience and initial feelings are similar to many of us here. And yet her reaction has been quite different; she has been co-writing papers on FND with some of the strongest supporters of the BPS model.

I do find that strange, given her conclusion, namely that FND was a misdiagnosis and she actually had Sneddon’s Syndrome.

 

[rvallee]

She rejects the conversion disorder but ended up pushing the conversion disorder with a different name invented explicitly to mislead that it's not? Wow, OK. That's weird. 0 on self-awareness but a 11 on self-weirdness.

 

[Sid]

FND is theorized by some physicians as deriving from the brain’s inability to send and receive signals properly due to physical and/or psychological precipitating factors.

Unfortunately these words don’t mean anything. They don’t add up to a coherent scientific mechanism.

 

[Hutan]

Here's the paper that she coauthored:
International online survey of 1048 individuals with functional neurological disorder, 2021, Butler, Stone et al

 

[rvallee]

Unfortunately these words don’t mean anything. They don’t add up to a coherent scientific mechanism.

And as it says it's merely theorized, without an actual hypothesis, and yet has been used in practice for decades to some degree, accepted as fact even before it came along because it's a derivative of the old narratives with a pseudoscientific packaging. There is effectively less evidence for their mechanism than there is for encephalomyelitis, which was observed in autopsies and is not possible with current imaging technology in live subjects.

How no one sees anything wrong with that is maddening and possibly reveals fundamental failure elsewhere in medicine, it's not possible to be this blinded to such a huge problem and not miss many other similarly-sized ones and many times more smaller ones.

 

[Snow Leopard]

Unfortunately these words don’t mean anything. They don’t add up to a coherent scientific mechanism.

Yes, without any sort of theoretical specificity it is just pseudoscience.

 

[TiredSam]

I find it quite odd and interesting that someone with a questioning and skeptical mindset, someone who could probably fit in well here, has ended up effectively campaigning for BPS proponents.

Did she happen to improve whilst she was going through it? (I should know that, but I can't bring myself to read it, sorry).

I think the attraction of this kind of stuff is that you get to adopt a new vocabulary, complicated explanations, be privy to a body of knowledge, and preach the gospel to those who haven't understood yet. That's about it as far as I can make out. It seems to attract people who can't be arsed learning something proper but want to sound clever anyway.

You can even get to call yourself "president" of an organisation you set up, and claim to be in the business of "helping people", as per Bridget Mildon's short bio under her article:



Going to the website and looking at the board members:

https://fndhope.org/team/fnd-hope-board/

They seem like a motley crew, four of them list their professional credentials and achievements, Ms Mildon doesn't.

Sorry to be so harsh and horrid, but so often this kind of venture is about someone finally finding their role in life, and it usually involves "helping people" by adopting a belief system and spreading it rather than doing the hard work of acquiring for example an education in medicine or psychology, the subjects she purports to be advising on. Some of these people are absolutely lovely, but as they stumble around on their voyage of personal discovery they can do untold damage whilst insisting that they are helping, which is why I get so harsh and horrid about it. She could be medically qualified up to the hilt and I could just be a grumpy old curmudgeon, but if so she seems to be far to modest to mention it, or any other qualifications or education she's availed herself of. Her long bio also mentions nothing:

https://www.madinamerica.com/2015/04/bridget-mildon/

Apparently she does advocacy work with patients. Here is another article about her:

https://chronicdiseasecoalition.org/news/patient-advocate-spotlight-bridget-mildon

Again, no mention of anything except her advocacy work. Of course, we don't all have to have a specific education or career, people's lives take all kinds of paths and that's fine. But we don't all have to posture as experts and spread dangerous nonsense that does real harm either.

 

[Helene]

I'm confused on the meaning of the "functional" label in medicine and having been wanting to bring this up for a while.

It seems that FND is commonly used as a synonym for conversion disorder yet I've also seen it defined as meaning simply that it's as yet medically unexplained - which actually would describe ME pretty well? I'm assuming there's just too much aspersion and innuendo tied to the term to be of any use?

Then there are functional doctors who as far as I can see can have a variety of types of previous medical training and then take some additional courses in the US to be qualified as functional care providers. The treatment they offer looks to me very similar to what a Canadian trained naturopath offers - nutritional supplements, food sensitivity testing, herbal treatments etc. The comment I often read on social media about the benefit of functional doctors and naturopaths is that they are treating the root causes instead of merely symptoms, as allopathic medicine does. This is a total head scratcher for me.

So here we've got this lovely, practical word "functional" used in these weird ways.

Can someone please enlighten me?

 

[Snow Leopard]

I'm confused on the meaning of the "functional" label in medicine and having been wanting to bring this up for a while.

It seems that FND is commonly used as a synonym for conversion disorder yet I've also seen it defined as meaning simply that it's as yet medically unexplained - which actually would describe ME pretty well? I'm assuming there's just too much aspersion and innuendo tied to the term to be of any use?

FND is no longer a synonym for conversion disorder as many medical practitioners have abandoned the idea (due to a lack of evidence despite a century of looking) that symptoms are explained by "emotional charge" that is somehow "converted" into neurological symptoms as described by Freud.

But make no mistake, to most medical practitioners, FND doesn't mean mean unexplained, it means the problem is due to abnormal functioning of the brain that is not explained by brain lesions.

Then there are functional doctors who as far as I can see can have a variety of types of previous medical training and then take some additional courses in the US to be qualified as functional care providers. The treatment they offer looks to me very similar to what a Canadian trained naturopath offers - nutritional supplements, food sensitivity testing, herbal treatments etc. The comment I often read on social media about the benefit of functional doctors and naturopaths is that they are treating the root causes instead of merely symptoms, as allopathic medicine does. This is a total head scratcher for me.

That is a different meaning of the word "functional"...

 

[Mithriel]

Papers on FND state explicitly that FND is a new name for conversion disorder and hysteria. It is hard to pin down what FND people are saying I think they mean that modern scientific methods have explained much of the biology involved. the concept has revealed it.

The last few months we have seen less of the hysteria description so I think they realised that people did not like it. I keep meaning to find references but I lose heart at the thought of looking for these papers.

Before FND as a concept in the first paper by Stone and Sharpe in 2008 there was a tension between doctors who use functional to mean, well, a function as you would expect and those psychologists and psychiatrists who used the term to mean a disease that served a function in the life of the patient, like letting them stop doing a job they loathed.

They had a lot of success by letting patients think they meant a problem with processes, software not hardware while doctors knew they were really talking about hysteria.

There is a middle ground which benefits from the confusion and spreading out in both directions are doctors who use one term or the other who often don't seem to realise the way the term is being used elsewhere.

Functional doctors sound like a branch of medical treatment who have also used the term to mean whatever they think it should mean.

Functions in mathematics are equations so we have things like wave functions so that is in the mix too

 

[Arnie Pye]

My bold...

It seems that FND is commonly used as a synonym for conversion disorder yet I've also seen it defined as meaning simply that it's as yet medically unexplained

The problem with the "medically unexplained" label is that this is also considered to be a description of a condition or symptom which is psychogenic, psychosomatic, conversion disorder, functional, hypochondriasis, Bodily Distress Disorder, attention-seeking, drug-seeking etc. Doctors have an entire dictionary's worth of euphemisms for "I don't believe you and there is nothing wrong with you".

 

[Helene]

those psychologists and psychiatrists who used the term to mean a disease that served a function in the life of the patient, like letting them stop doing a job they loathed.

Aha! - that makes sense, or doesn't make sense - but it's now clear

Functional doctors sound like a branch of medical treatment who have also used the term to mean whatever they think it should mean.

Thank you @Mithriel