#fnd — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #fnd, aggregated by home.social.
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People with FND.
A family member with FND has asked me to come and help them get sorted in their house.
I appreciate it can look different in different people, but are there any basic things I need to keep in mind?
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My Exchange with an FND Physical Therapy Specialist
By David Tuller, DrPH When I write about functional neurological disorder (FND) or functional neurological symptoms, I sometimes get feedback from Zachary Grin, a physical therapist in New York. As an FND specialist, he disagrees with pretty much everything I write about the topic. At first, I tried to engage with Zachary in a good-natured manner. I had some sympathy for him because he’s a young gay guy—well, much younger than me, at any rate—and had publicly expressed having had some difficulty with his family over the issue. But that period was short-lived. I blocked him on X quite a while ago when he accused me of “lying” about the PACE trial. Specifically, he accused me of lying when I pointed out that the authors had lowered their outcome thresholds so dramatically that trial participants could be simultaneously “recovered” at baseline on two key self-reported measures—fatigue and physical function. Instead, he parroted the PACE authors’ response to this criticism—that no one was “recovered” at baseline because there were four separate recovery variables, and participants had to meet the designated thresholds for all four of them. This was a bogus response that avoided the facts. I have never claimed that anyone was “recovered” fully at baseline by the PACE definition of the term. What I have pointed out—accurately—is that some people met the “recovery” thresholds at baseline for two of the four “recovery” metrics. Even after I explained Zachary’s error, he continued to insist that he was right and I was “lying.” That was the last straw for me. He was only the second person I have ever blocked on the platform—and I haven’t blocked anyone since. In general, life is too short to pay attention to Zachary. But sometimes he forces himself on my attention by commenting on a post—as …https://trialbyerror.org/2026/05/27/my-exchange-with-an-fnd-physical-therapy-specialist/
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My Request for Correction of Causal Claim for Functional Neurological Symptoms
By David Tuller, DrPH This morning I sent the following letter to CNS Spectrums, a neuroscience journal published by Cambridge University Press. Subject line: “Correction needed for etiological statement in ‘Functional neurological symptoms occur commonly in healthy adults: implications for the pathophysiology of FND.'” Depending on the response, or lack of one, I might also formally submit the letter for publication. ********** Dear Editor— In the introduction of a recent paper in CNS Spectrums, “Functional neurological symptoms occur commonly in healthy adults: implications for the pathophysiology of FND,” the authors write that “functional symptoms are neurological symptoms which are generated by abnormal brain processing.” (FND refers to “functional neurological disorder.”) However, this description represents the authors’ theory about what is causing such symptoms. It is not a proven fact, and should not be disseminated as if it were. In reality, the authors do not know what causes functional neurological symptoms or FND and are offering their best guess. But the statement conveys a level of certainty that cannot be justified based on the existing state of evidence. It would be different if the authors provided data to support this categorical claim, but they do not. Nor does the article cited by the authors—a 2022 paper in Lancet Neurology, “Functional Neurological Disorder: New Phenotypes, Common Mechanisms.” That paper, at least, framed the issue in a more cautious and appropriate manner by referring to the “current understanding” of the factors that many investigators believe are causing these complex conditions. It is harmful to the scientific process when authors present their theories as documented and indisputable facts. The definitive assertion about the cause of functional neurological symptoms should therefore be corrected. (I have cc’d the corresponding author and the editors-in-chief.) Thank you for your consideration of this matter. Best–David David Tuller, DrPH Senior Fellow in Public Health and … -
So FND Is Not Only a Brain “Software” Issue After All…
*Kim H, a FND patient with whom I have frequently exchanged views, has left a comment below. I urge others to read it. I disagree with her interpretation, but I certainly think she has a right to express her perspective. However, I stand by my post. ********** By David Tuller, DrPH For years*, experts in functional neurological disorder (FND) have categorically asserted that the condition is strictly a “brain network” disorder, representing an issue solely with the brain’s so-called “software,” or functioning, rather than its “hardware,” or structural elements. According to this framework, structural elements of the brain, or other organic or pathophysiological processes, played no role in causing the condition. [*I initially wrote “decades” and have corrected it.] The well-known FND website, neurosymptoms.org, has long popularized this notion—and continues to do so. The site currently proclaims on its home page that FND is “caused by a PROBLEM with the FUNCTIONING of the nervous system” and that it is “a ‘software’ issue of the brain, not the hardware (as in stroke or MS).” From this perspective, the “hardware” is irrelevant. Given this view, anyone suggesting that the etiology of FND might involve something other than “software” problems or malfunctioning brain networks has been routinely dismissed as engaging in “dualistic” thinking. As I understand it, the purported “dualism” involved the belief that somatic symptoms were likely caused by unidentified pathophysiological dysfunctions, not just aberrant brain “software.” This accusation of “dualism” always struck me as backwards, since it was the FND proponents who themselves advanced the rigid “software” vs “hardware” dichotomy. Isn’t it “dualistic” to argue for a complete split between “software” and “hardware”? Or am I the confused one here? (I assume the FND folks would say yes.) Whatever. In the introduction to a recent collection of papers on FND in the …https://trialbyerror.org/2026/05/20/so-fnd-is-not-only-a-brain-software-issue-after-all/
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The Disabled Leads Bundle! I'm a disabled writer, and disability representation is important to me. there is overlap between their disability experiences and my own.
In this bundle, you can get Airphibious, a swashbuckling fantasy, or The Wood, a coming-of-age fable, for 75% off. Each book is $0.50 or $1 for both.
#FNDaware #FND #disability #disabled #writing #writer #indiebooks #books #literature #novella #novelette #fantasy #fable #adventure #ComingOfAge
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FND + mobility aids = empowerment. For many living with Functional Neurological Disorder, these tools aren’t defeats, they’re freedom. Use what helps you move through the world. 💙
#FND #FunctionalNeurologicalDisorder #MobilityAids #FNDAware #ChronicIllnessSupport
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April is FND Awareness Month! I acquired functional neurological disorder a few years ago as a result of COVID infection. I experience intermittent paralysis, muscle weakness, brain fog, tremors, and non-epileptic seizures as a result.
You can learn more about FND at FND Hope (linked below)
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The single best thing I learned from a Women’s Trauma Therapy Group is you aren't freaking out, melting down, losing your shit, or going crazy - you are dysregulated.
Your body and nervous system are overwhelmed and not working properly. Sometimes dysregualtion comes by surprise, surprise! But hard work, planning, thoughtfulness, building an invisible tool belt of coping and centering skills, saying no thanks often can reduce how often and how bad one dysregulates.
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RE: https://disabled.social/@Autumn_and_their_illness/116414247280921358
Welcome new user and member of disabled social, Autumn! Check them out, say hi, give them a follow.
#FND #chronicillness #Spoonie -
FND, explained simply:
Your brain sends signals like
“move,” “speak,” “stand.”
With FND, the signal gets scrambled
on the way.
The body isn’t broken.
The message just doesn’t land.
It’s not imagined.
It’s neurological.
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Spent today editing and uploading a video for WheelyHappyDays — Sha shaving her head. Hair's been thinning for months due to FND, ME/CFS, fibromyalgia, menopause, and stress. She decided to take control of it rather than keep watching it go.
The blog post is up with the full story. Worth a read if any of that sounds familiar.
I'm not one for gushing. But I'm quietly very proud of her.
https://wheelyhappydays.uk/daily-journal-monday-6th-april-2026-going-bald-on-my-own-terms/
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This afternoon has been occupied, and a little unusual.
MrsVark made a big decision today. I think it's turned out well. I just wish I was a better photographer.
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In the past I've mentioned that my wife (of 40 years) suffers from Functional Neurological Disorder.... now in a meeting of two aspects of my private life, my friend's daughter (who is a GP & blogger) has written an excellent guide to FND for those unaware or only vaguely aware, of the condition (which I usually describe as a software problem not a hardware one).
If you're interested in knowing more about FND then I can heartily recommend Charlotte's blog.
#FND #health
https://thehealthandhealingnarrative.com/2026/03/09/what-is-functional-neurological-disorder/ -
This afternoon I've been helping MrsVark create a couple of video shorts for YouTube and the Burntwood Spoonies group she has set up on Facebook.
She has a fabulous new wig on in this one.
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This a'ernoon, I have been mostly drinking cider. Well, drinking a tiny bit of cider and mostly updating MrsVark's website.
I'm sorely behind on uploading some of the journals she has written. So I've done about 10 of them today.
MrsVark lives with #FND, #MECFS and #Fibromyalgia. She's blogging (journalling) her journey through life.
She's at the start of the journey so many of the days are bad ones. But not all.
https://wheelyhappydays.uk/
#ChronicIllness #WritingWithChronicIllness -
Day 18 of the gin advent calendar. A near-perfect 9.5/10 and a rare moment of agreement with MrsVark.
The blog post also has a few choice words about Functional Neurological Disorder (FND), the bastard thief making MrsVark's life hell. It's cruel to have your own thoughts held hostage by a faulty connection between brain and mouth. FND can fucking do one.
https://theaardvark.co.uk/gin-advent-calendar-day-18-a-near-perfect-gin-and-a-rant-about-fnd.html
#GinAdventCalendar #Gin #FND #FunctionalNeurologicalDisorder #ChronicIllness #FNDAwareness
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Fucking torn in two.
Listening back to the (potentially) the first track I've created for the #AarDHD project and feeling immense because it's everything I imagined and more.
But MrsVark went to a community choir tonight and found, for the first time, that #FND / #CFS hjas stolen her singing voice from her. She's heartbroken. It's her very soul... and it's gone.
I'm broken for her. I want to console her, but also push her to work to get it back. It's beyond sad.
But my personal project is.... -
Neurodivergence: The hardware is designed with a different architecture (ARM instead of x86, for example) and some software is incompatible with the architecture; the hardware is optimized for different software.
It's just metaphors I know, and some will probably object to them (I hope no one takes offence). I'm not even a fan of the Computational theory of Mind (CTM) but I feel this fits well enough to be used casually. #fnd #epilepsy #neurodivergence #autism #adhd -
I've been spending almost a week at a hospital for epilepsy on the east coast of Norway. Trying to summarize this week's content and neurological topics for myself in my own words through some metaphors:
Epilepsy: The hardware sends incorrect voltage with current or sends electricity where there shouldn't be electricity.
PNES/FND: Kernel/driver error that creates poor communication between hardware and software, and the result is occasionally glitchy software. #neurodivergent #epilepsy #fnd -
They upped one med and added a blood pressure pill—despite me having low to normal BP. Now I’m calm but constantly exhausted, losing chunks of my days. Coffee and energy drinks can’t keep me awake.
#MentalHealth #MedicationSideEffects #ChronicIllness #DisabilityAwareness #fatigue #music #tompetty #fnd #complexptsd #cptsd #what #freespeech
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I've been busy over the last few days, trying to catch up with all the posts MrsVark has written for her Wheely Happy Days blog, but which I was too knackered to upload.
The blog is an honest (often brutally so) record of her life as she gets used to, and learns to cope with, life with FND (functional neurological disorder) and CFS (Chronic Fatigue Syndrome).
https://wheelyhappydays.uk/
#FND #FunctionalNeurologicalDisorder #CFS #ChronicFatigueSyndrome
#ChronicIllness -
Study Finds Signs of “Functional Limb Weakness” in Patients Not Reporting Actual Limb Weakness
By David Tuller, DrPH
A recently published study about functional neurological disorder (FND) has reported some perplexing data. Of almost 300 patients diagnosed with Long Covid, 100 were identified as demonstrating one or more “positive signs” for “functional limb weakness,” a form of FND. Yet only 14 of those 100 patients reported experiencing limb weakness in the first place; the other 84 did not.
Hm. What does it mean to identify positive signs of functional limb weakness in the absence of reported limb weakness? Who knows? Certainly the investigators themselves make no credible attempt to explain this conundrum.
The study—“Contemporary positive signs of functional limb weakness in post-acute sequelae of SARS-CoV-2: an exploratory analysis of their utility in diagnosis and follow-up”–was published in June by BMJ Neurology Open, a major joural. It is retrospective, with data drawn from the medical records of Long Covid patients who attended a neurology clinic in Tokyo, Japan, from 2021 to 2014. At the clinic, they received comprehensive neurological exams, including testing for positive signs for functional limb weakness. (According to current practice, FND diagnoses require affirmative clinical indications, often referred to as “positive signs” or “rule-in signs,” such as intact reflexes in a limb said to be weak or paralyzed, that are purportedly incompatible with known pathophysiological processes.)
During the exams, the neurologists tested for functional limb weakness using six different signs, described in detail in a supplementary file. Apparently, the discrepancy between the number of patients found to have these positive signs and the much smaller number who actually reported limb weakness during these exams did not raise any particular concerns among the investigators.
Instead, they seem to have assumed that positive signs for functional limb weakness in people with Long COVID indicate cases of FND–even in the absence of evidence that patients are experiencing the relevant symptom. The investigators then suggest that these alleged cases of FND are likely implicated in generating and/or perpetuating Long Covid symptoms like fatigue and headache. “Some of the most common neurological symptoms of long COVID may be caused by FND,” they conclude.
Given that five in six of those with positive signs of functional limb weakness did not report limb weakness, this line of argument is kind of bonkers. The most urgent question arising from this study is: Do these signs mean anything at all? (Several of the signs have long been used in neurology; a couple of them were much more recently identified. As I have previously discussed, the evidence for the overall accuracy of these various signs is shaky.)
I suppose it is possible that some patients in the study might not have been that specific and might have referred to limb weakness as “fatigue.” But it seems highly unlikely this would have occurred in 84 out of 100 cases. After all, these patients underwent comprehensive neurological exams that included tests for functional limb weakness. Presumably, the neurologists conducting these exams asked questions that would have, or should have, elicited an accurate accounting of a distinctive symptom like limb weakness.
FND is the current name for the psychiatric condition formerly called conversion disorder, in which psychological distress was said to have been “converted” into physical symptoms. Experts in the FND field assert categorically that is a “brain network” disorder, but that is a theory, not a fact. The reality is that the etiology and pathophysiological processes causing the symptoms remain unknown. What is clear is that people with FND suffer from extremely distressing and disabling symptoms that resist easy explanation. Those with the condition are ill-served by research that fails to abide by basic rules of scientific reasoning.
My UC Berkeley colleague, infectious disease physician and professor emeritus John Swartzberg, shared my low opinion of this piece of work. That this deeply flawed paper passed through a BMJ journal’s peer review process, he said, was “very disappointing.”
The paper is marred by sentences like this: “Assuming that patients with positive signs had FND, the prevalence of FND coexisting with long COVID is likely to not depend on which variant of COVID patients were infected with but solely on the number of patients infected with COVID-19, as observed in this study.” Since those with positive signs of functional limb weakness were much more likely not to have reported any limb weakness than to have reported it, the assumption that “patients with positive signs had FND” is hard to justify. And any further claims built on that unjustifiable assumption cannot be taken seriously.
And there are passages in which, given the uninterpretable results on the positive signs, the argument reads like a parody:
“In summary, our study showed that long COVID, accompanied by positive signs, is not rare and that this phenomenon indicates the possibility of the coexistence of long COVID and FND. Therefore, some patients with long COVID may present with symptoms of FND. If positive signs are observed in long COVID patients, they are a useful indicator of the coexistence of FND in those with long COVID.”
The paper is a house of cards built on unwarranted assertions and pirouettes of logic. (I’ve addressed a core concern in this post but not the only one.) In any event, BMJ journals have not distinguished themselves when it comes to ME/CFS and Long COVID. This latest problematic publication is not remotely surprising.
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Findi ( #FND ) has released " FND FY25 Results Presentation " on Fri 30 May at 08:55 AEST #tax #ESG #government #India #Australia
https://grafa.com/asset/finders-resources-limited-7112-fnd.asx?utm_source=asxmktsensitive&utm_medium=mastodon&utm_campaign=fnd.asx -
BLOG | NOW. I JUST CAN'T |
I'm #Disabled & can't work. I used to - I was an IT Consultant data Analyst for the #NHS...But THEN:- #Pneumonia #FND #Fibromyalgia ... Just. WRECKED. Me.
#PIP & #DisabilityBenefits are NOT given to "Skivers".
They're GIVEN. TO. US.
https://phoenixdragonqueen.webador.co.uk/blog/2465758_now-i-just-can-t