I've effectively been receiving death threats via email as well (so I've left X for now)
Drafted this open letter
https://fndnope.org/posts?postId=87
Open Letter to Zachary Grin, DPT
I am writing this open letter in the spirit of clarity and finality regarding our recent exchange on X.
I have removed from my feeds and website the cartoon or meme that you felt used your likeness. The image originated from deeply personal experiences involving my wife. I acknowledge that it could have appeared edgy or insensitive to some, and I therefore took it down.
I never named you in connection with the image, linked it to your practice or any clinical setting associated with you, or claimed that you personally had missed dangerous diagnoses. I consistently avoid identifying individual doctors on my website and X account.
I am frankly shocked that you are considering legal options over this. I do not believe there are legal grounds, particularly given the full context. Nor do I have any interest in becoming involved in legal proceedings across jurisdictions, with me being based in South Africa and you in the United States. I consider the matter of the image closed and do not intend to engage with you further about it.
That does not, however, resolve my concerns about how my wife’s case and possible differential diagnoses have been characterised publicly.
Since the discussion has now moved beyond the removed image and onto my wife’s medical history, I need to address that directly. Her case has been discussed online by you and, earlier, by the
“Anonymous Neurologist” on FND Nope. Claims have since been made about her diagnosis, my understanding of it and my reasons for questioning the FND label. I therefore want to clarify the facts in my own words.
This interaction has also exposed the very red flags I have repeatedly raised through FNDNope.org: limited clinical information being treated as sufficient for diagnostic certainty, legitimate uncertainty being portrayed as incoherence, and scepticism being reframed as denial or harm. Rather than alleviating my concerns, this exchange has inadvertently demonstrated why those concerns exist.
In South Africa, a country with roughly 150 neurologists serving more than 60 million people, we do not have easy or repeated access to specialist neurological care. One neurologist diagnosed my wife with FND. It later became apparent to us, and to other neurologists, that this diagnosis was not grounded in a documented clinical presentation supported by positive rule-in signs.
Since then, further investigation has identified optic neuritis and gastroparesis, while another clinician initially suspected Parkinson’s disease. I am not presenting any of these as the final answer. This is an emerging clinical picture, so some details may inevitably appear confused or disjointed as new information becomes available. That does not make the case dishonest or incoherent. It demonstrates that the situation is complex, evolving and difficult, not the “textbook” or “clear-cut” FND case it has been portrayed as online. Your insistence on presenting such a nebulous and incomplete case with unwarranted certainty inevitably invites questions about your own intentions.
That matters. When specialist access is so limited, a single diagnostic label carries enormous weight. It is entirely reasonable to question whether that label was reached with the rigour that the diagnosis is supposed to require.
At one point, CIS entered the clinical picture. I have said CIS; I have not claimed that my wife has a clinically confirmed diagnosis of MS. That distinction is deliberate.
CIS is inherently a category of uncertainty: an episode consistent with demyelination that may remain isolated, may later meet the criteria for MS, or may eventually be explained by something else as further information becomes available. In our case, whether the condition evolved further remains unclear to us because we do not have complete access to all the relevant follow-up information.
Describing the situation in those limited terms is more accurate than declaring a definitive diagnosis that I cannot confirm.
Some have treated my reference to CIS as evidence that my account is incoherent or dishonest. That reverses the logic. I could have erased the uncertainty and simply declared that my wife has MS. I did not. I described what was actually on the table: possible CIS that may have evolved further, alongside an FND diagnosis that we do not accept as having been adequately established.
Choosing the more limited statement is not evasion. It is honesty about the limits of what we currently know.
Public rebuttals have portrayed my wife’s presentation as a “textbook” or “clear-cut” case of FND. My refusal to accept that label has been characterised as denial that could worsen her symptoms, while the distinction between CIS and MS has been used to suggest that any alternative account collapses.
Those arguments claim considerably more certainty than the available facts support. Neither I nor anyone commenting publicly, including you, has access to a complete, longitudinal clinical picture. We are all working from incomplete information. Asserting diagnostic certainty or labelling my position as denial therefore requires a level of knowledge that no one outside the treating team actually possesses and that even successive clinicians involved in her care have not claimed.
I have repeatedly stated that I am not a clinician. That is true, and I make no claim to clinical authority. However, acknowledging that limitation does not require me to abandon ordinary logic or common sense. One does not need a medical degree to recognise when an evolving and incomplete case is being described with more certainty than the available evidence permits.
In your case, I understand that you are not ordinarily involved in making the original neurological diagnosis. By the time patients reach you, an FND diagnosis may already have been established by someone else, and you may reasonably begin from that premise. However, that also means you may not have been involved in the earlier diagnostic reasoning, consideration of differential diagnoses or exclusion of competing explanations. Based on our interactions, I am not persuaded that you fully grasp, or at least adequately acknowledge, the complexities and uncertainties that can exist at that stage.
The claims made by the “Anonymous Neurologist” are harder to understand. The level of certainty projected from fragmentary online information leaves several possibilities: they may never have encountered a genuinely complex case, they may possess some extraordinary diagnostic ability that exceeds what the available information would normally permit, or they may not be who they claim to be. I cannot determine which is true, and I do not assert any of them as fact. What I can say is that anonymity does not convert confidence into evidence.
It is also important to state a basic point of logic: the possibility that other parties involved, including neurologists, or proposed alternative explanations may be wrong does not establish that FND is therefore correct. Showing uncertainty, inconsistency or error in one position is not positive evidence for another. FND must stand on its own supporting clinical evidence and properly documented rule-in signs; it cannot be established merely by attacking or eliminating competing accounts.
Social media exchanges usually contain limited medical information and almost never provide a complete clinical picture. That alone warrants considerable caution before describing any presentation as “textbook” anything. In a healthcare system where sequential imaging, CSF results and longitudinal neurological review can be difficult to obtain, diagnostic pictures may remain incomplete for a long time.
Acknowledging that incompleteness is not the same as inventing a story.
I am not asking anyone to accept a particular diagnosis. I am asking that incomplete information not be converted into proof of denial, irrationality or bad faith. When a family operating within a low-access healthcare system declines to treat a contested functional diagnosis as final and continues seeking clarification as symptoms progress, that is not absurd or dangerous. It is a rational response to genuine uncertainty.
By way of broader context, I created FNDNope.org as the husband of a woman whose progressive symptoms were repeatedly attributed to FND by one very specific clinician, while we continued fighting for further investigation and appropriate medical care. My scepticism did not arise from abstract hostility towards patients or clinicians. It developed through years of lived experience with the consequences of diagnostic closure.
The website exists to provide space for critical discussion of the FND framework and for patients and families who believe their concerns have been dismissed. Open inquiry sometimes gets things right and sometimes wrong; that is inherent in open inquiry. Framing scepticism itself as inherently dangerous discourages legitimate questioning and reinforces the very mistrust that constructive dialogue should seek to address.
When I write on this website, I do so in the same spirit of inquiry. I accept that I can be challenged, corrected and asked to support what I say. What I will not do is constantly bow down to professional status when someone overreaches beyond what the evidence supports. Expertise deserves serious consideration, but it does not place a person or a diagnostic framework beyond scrutiny.
To be blunt, I do not believe the way you have conducted yourself on social media has been conducive to a constructive discussion of these concerns. As a clinician commenting publicly on a contested diagnosis and an incomplete case, greater caution is warranted before asserting diagnostic certainty or attributing disagreement to denial.
I am not sure why it was necessary to portray or demonise me in this way simply because I continue to question an uncertain diagnosis and advocate for my wife. Following these exchanges, I also received a threatening email from an anonymous sender. I am not claiming that you sent, authorised or had any involvement in that email, because I have no evidence of that. However, it illustrates the hostile atmosphere that can be created when legitimate scepticism is portrayed as dishonesty, denial or harm.
This letter reflects the points I have already made publicly. I consider the matter of the removed image closed. My concerns about how my wife’s case and scepticism of the FND framework have been portrayed remain.
Sincerely,
Christoff Truter