Functional Neurological Disorder (FND) - articles, social media and discussion

I recently saw a discussion on twitter from a neurologist pushing FND for LC, and many times the person just repeated how they're just "trying to help". Many times throughout the thread, like a mantra. Every bit of criticism, people asking questions about the validity, was met with it.

So, alternative medicine. With the power to coerce and redefine reality, to literally see someone highly disabled and write down that they are in perfect health. Without any accountability, or any process at all, since as we know most of those labels are added automatically in a few seconds. The worst of both worlds.

 

And no doubt Michael Sharpe has, or will at some point, tweet that, thinking it applies the other way. It's impossible to reach ideologues, especially when their income depends on perpetuating their lies.

 

When you have no prior knowledge of a condition this is the approach that people take. We put trust in healthcare professionals and there are usually relatively no issues with other conditions. I was the same with my ME/CFS diagnosis, I was just glad to have received a diagnosis and the promise that I could recover by completing GET & CBT (for me pacing and depression therapy).

This is where it gets sticky with a ME/CFS/FND diagnosis. If Dr Goldstein was correct in his Limbic Hypothesis then FND medical treatments will work as he used a wide range of what he called 'Neurosomatic Medicine' for ME/CFS patients. The difference is he said the cause was physical(injury), but with FND the cause is emotional. It's kind of like FND practitioners have hijacked his work. Dr Goldstein worked closely with Dr Hyde who evidenced brain injury in some ME/CFS patients.

I've read Dr Goldstein was able to bring some of the worst ME patients back to life. So if FND patients are technically receiving the same treatments then it is going to be very hard to convince them they've been incorrectly diagnosed, as it's just the cause that is different.

 

Exactly my experience as well. I was recently told by a neuro charity that it doesn't sound like I have ME/CFS due to my tell-tale neurological symptoms and that ME/CFS is an FND condition. The NICE guideline refers to ME being categorised as neurological, so how can it be? Have all sole neuro symptoms been ignored? The charity said they were upset that health practitioners are handing out FND diagnoses to people who sound like they don't have it when they have been very supportive of FND practioners. So it sounds like there has already been a lot of interaction between neuro charities and FND proponents. The chances of calling up a neuro charity and being referred to a FND charity is now high unless they think you've been misdiagnosed. That's where we actually are with ME/CFS, an officially recognised neuro condition being treated as functional.

People need to draw up a definitive list of their symptoms because it sounds like some cannot be caused by FND.

It's so ambiguous. I think it's something along the lines of people worrying about something like brain damage after a head injury when CT and MRI results are clear because the chances of ongoing problems are rare (so are people not entitled to find out if they are a rare case?) They also argue that post-concussion syndrome is actually now FND because there is no visible problem and a lot of the symptoms are associated with many pathological issues. According to them it's just ill-informed doctors and patients making it up.

The problem is also the organisations with massive financial interest into FND theory.

 

In thyroid treatment, most people with hypothyroidism have primary hypothyroidism (about 90% allegedly) i.e. the problem is with the thyroid itself not producing sufficient thyroid hormones. There is also secondary hypothyroidism where the pituitary can't make sufficient TSH (Thyroid Stimulating Hormone), and tertiary hypothyroidism where the hypothalamus can't make sufficient TRH (Thyrotropin Releasing Hormone).

When people have central hypothyroidism (the name used when hypothyroidism could be secondary or tertiary but nobody has tested to find out which) getting testing for it can take many years. When doctors are asked why they won't test they are told "It's very rare". End of conversation, immediate dismissal, and no further testing.

 

This is when the complaints process kicks in. The doctor must explain why they think there is no way the patient can be a rare case. So far my physical testing has proven the ME FND diagnosis to be BS. We've found breathing irregularities, GI problems, hormone imbalances, and inflammation markers. Next up is neuropsychometric!

 

Trial By Error: A Letter About the Inflated Prevalence Rate of Functional Neurological Disorder

"Why does it matter if FND experts argue in one paper that the prevalence of FND among outpatients at neurology clinics is “approximately 6%” but elsewhere report that it is 16%, or even state that it is up to one-third? A key reason is that doing so undermines the credibility of the argument that FND is now a rule-in diagnosis and not a diagnosis of exclusion. Lumping together patients with and without rule-in signs in a single category risks turning FND into a wastebasket diagnosis applied to anyone with unexplained symptoms. That happened routinely with the hoary construct of “conversion disorder,” the term FND is meant to replace. Suggesting that patients without rule-in signs have FND is, in effect, misdiagnosing them. And misdiagnoses can lead to an array of unfortunate consequences.

Given that the term “functional” is now frequently used to describe any symptom or condition for which no organic cause has yet been identified, it is understandable that patients with unexplained neurological symptoms might automatically get slapped with an FND diagnosis. But the term now has a more specific and clearly defined meaning. When it comes to prevalence rates, the frequency with which investigators appear to be casually conflating “functional” and FND, as if the two were interchangeable, is likely to generate serious confusion for patients and clinicians alike. In medicine, words matter."

https://www.virology.ws/2022/07/07/...nce-rate-of-functional-neurological-disorder/

 

It doesn't really make sense to me to pretend that this 6% is any valid. The "rule in" diagnostic for conversion disorder literally includes having many common symptoms of illness and seeking healthcare for it, which would imply that it's abnormal for people with "genuine" diseases to do that. This is obviously absurd. If peptic ulcers hadn't been taken off the table by Marshall and his team, they would 100% be "ruled in" as "functional" GI, at the very least the latest fashion of simply saying there's always a "functional overlay".

So it makes sense that they would further inflate that number, because when you are allowed to make numbers up, what's the difference between fake numbers and bigger fake ones? Of course there are many cases where medicine doesn't have the technology to figure it out, it's literally expected, healthcare is nowhere near as good as to pretend that they can easily and economically identify 100% of problems.

This is also true in engineering, where they simply replace the parts or whole machines. Medicine can't do that, but it's BS to pretend that they are infallible, we're not even half-way yet to understanding everything.

 

That is not really what the "rule-in" signs mean. I haven't seen "many common symptoms" among the rule-in signs they use. They're talking specifically about the so-called signs used to diagnose "non-epileptic" seizures, limb weakness, tremors, and so on. Whether or not those rule-in signs have diagnostic value for assessing whatever FND means is a good question, as I've written about. In practice, you're right--having many symptoms is used by clinicians to give someone an FND diagnosis, just like they might give it to anyone with symptoms they don't understand--but it's not an official "rule-in" sign in the terms they're talking about.

Also, to be clear: Calling out these discrepancies is not necessarily saying anything about what the 6% do or don't have. It's just calling out discrepancies based on their own contradictory statements.

 

Distraction- the key to automatic normal function

"Recently I had the privilege of attending the 2022 Functional Neurological Society’s international conference. What an inspiration that was! It was so exciting to see hundreds of medical providers eager to learn more about FND.

One frequent topic was the role of attention in FND. Redirecting attention is a cornerstone of FND treatment. One video shared by a speaker showed a woman with FND struggling to walk. Her gait was much like many of us have experienced firsthand- staggering, off-balance, and hesitant. Her difficulty was evident. However, while she was sitting while waiting for her next exercise, her phone rang. She popped out of her chair and walked over to answer it with no gait issues at all. For the uninitiated, it would appear that her mobility problems weren’t real. This is part of why we FND patients have been disbelieved for so long. When a neurologist is able to induce normal movement through distraction maneuvers, there is not much question about the diagnosis. One of the defining characteristics of Functional Neurological Disorder is our ability to function normally when we are distracted."

https://fndrecovery.com/2022/07/09/distraction/

 

"Physical therapy can be very helpful with this. If you see a physical therapist who isn’t experienced with FND treatment, be sure to take along Glenn Nielsen’s landmark paper on FND treatment. While other patients who need to relearn to walk might need to focus on their legs, that approach will quickly backfire for those of us with FND."

Our thread on that paper is here, Physiotherapy for functional motor disorders: a consensus recommendation, 2015, Nielsen et al

 

I had this. It turned out to be caused by Normal Pressure Hydrocephalus. I had good days and bad days (and good hours and bad hours) before surgery to fix the problem. Increasing my levels of vitamin B12 and folate helped too.

I think I was lucky to have got the diagnosis when I did. A year or two later and it is unlikely I would have got the tests I needed to diagnose, and therefore I would never have got the surgery either. I rarely stagger now. I still can't heel-toe walk though. I just fall over.

 

I can't see any of this due to the paywall but it might be of interest to those who have access.

Hysterectomy and Hormonal Dysregulation in Functional Neurological Disorder: A Comment on Stone et al., 2020
https://neuro.psychiatryonline.org/doi/10.1176/appi.neuropsych.21090236

 

Anyone surprised? No, I'm not surprised either...

 

"By a Long Covid clinic" being the worst part of this. Completely unique level of ineptitude and systemic failure.

 

So if you have your leg amputated and it doesn’t start growing back by a year it must be an FND.

 

The saga begins..........

 

I don't really see the point of the Long Covid clinics, or the ME/CFS ones. We have no good diagnostic, we have no treatment the money spent on all these clinics would be far better spent on research and on trials to take one of the existing bio markers to the point of being usable by GPs to diagnose with. To waste all this money on hurting patients in boggles the mind not only the waste but that no one is stopping the appalling systemic widespread mistreatment and medical malpractice.

 

I would say there would be value in a service that helped people understand their current symptoms and to understand how to avoid worsening their condition if they display PEM, to provide medical support in managing symptoms (eg pain killers, sleep medication), to give people what little information there is on prognosis including the possibility that the may experience little or no remission, to ensure they access support in relation to work or in relation to benefits and home support if not able to work, etc. Unfortunately this doesn’t seem to be the model being considered.

The main problem is services thinking they can actually treat the condition through rehabilitation when there is as of yet no evidence that it will help and that it is likely for some it will harm.