Sid
Senior Member (Voting Rights)
“Young and female? It’s FND. I don’t accept this referral.”
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Functional Neurological Disorder (FND) - articles, social media and discussion
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“Young and female? It’s FND. I don’t accept this referral.”
Arnie Pye
Senior Member (Voting Rights)
Do Stone and Sharpe really believe that patients are too stupid to read about the history and derivation of the name FND? It's no more acceptable to me personally than conversion disorder, neurasthenia, hysteria and somatic symptom disorder. There are probably a few other names I would rather not be labelled with since I know that they inevitably end up as total barriers to ever getting proper testing and treatment for anything that ails me.
rvallee
Senior Member (Voting Rights)
The beauty of this scam, is that the expert witnesses who would be called to evaluate the claims are... *drum roll*... them!
Ain't that system a beaut? It's the most perfect scam ever created.
rvallee
Senior Member (Voting Rights)
It worked perfectly before the Internet, almost no one had access to that information. And that's why they strongly advise their patients to avoid patient forums. Basically they don't care either way, it works and we can't do anything about it because it's all decided in secret behind closed doors.
How many of us are aware of this? Over time it will happen quicker for people to see through the scam, but it has a pretty long shelf life ahead yet. Keith Geraghty has been discussing with someone who leads a FND group or something, showing her evidence that explicitly says it's conversion disorder (from papers by Stone and the rest) and how it's all about emotions and she just can't accept it. I see the exact same thing in politics, you can get people to admit to basic facts, then see them rationalize them when they can't reconcile them with having said "X is the red line", well actually the red line is all the way over there.
Long Covid is what will change this all. We used to be completely divided and conquered, but it will still take years for people to get quick access to the right information. There's not a lot of easy references to give to people, would be really great to have an equivalent counter to neurosymptoms.org revealing what they actually mean. I think a good solid media campaign revealing exactly what they mean so that new patients can be warned in advance would probably end it all, but it will still take years.
Statutory power and the complete lack of accountability means they can really do whatever they want and not care about outcomes, they don't see anything outside of their ivory towers. Their concerns are their day jobs, their status, their work colleagues and their projects. They don't see us and we don't count to them.
Interesting. I read this through and one neurologist talked about SHOWING them the Hoover's sign. I had to look this up. Seems to be about it only being genuine if when trying to lift the bad leg the patient is unable to do so without pushing through the heel of the good leg.
But what about people who have trained in various athletics/dance? That in itself seems to be missing the idea that some will have spent years of their youth training to do various things where they keep one limb or side still whilst doing something with the other. Given lots with ME are ex-athletes I'm curious what spiel is given with this 'definitive test' and whether it has ever been tested 'in context'.
I'm pretty sure I can lift either leg and keep the other from being affected by the effort, and there is nothing 'unconscious' about it. It's a learned skill, although admittedly I'd be focusing on doing that (so I understand the concept of reflex and can do it in such a way I know what they are looking for) but it doesn't take that much effort to isolate the one leg and reduce that reflex - you just switch on that muscle-memory from whatever sport it was I learned it?
Oh and then there is male vs female in the literature they have taken this sureity from. Surely hips is one of those body-parts where they must be reading from gender-specific studies, given the differences?
And what if the hips also have other problems, like osteoarthritis?
lunarainbows
Senior Member (Voting Rights)
Yes, I wonder if others here personally know people (outside of this forum, and outside of ME or long covid advocacy), who have been diagnosed with FND? As I know several. Two of them had a prior diagnosis of ME before being diagnosed with FND (but were never involved in ME advocacy), another was diagnosed with FND for other reasons, and etc. And they all accepted the FND diagnosis, and were even happy they had been given a diagnosis - one even saying “I’ve been diagnosed with a neurological condition!”. And they were also happy with the treatment they were given, and agreed with the theory that the mind affects the body. They think they are stigmatised not because of the theory (as they believe & agree with the theory), but because doctors don’t take them seriously or don’t have enough funding & resources to help them enough.
Only one person I know has started thinking differently, and that’s a family member with whom I’ve had discussions lately, and that’s only because of my own recent situation. Maybe most of the people I know are outliers, but I don’t think so. Some of the people I know also seem to have improved significantly on FND treatment, which further colours their thoughts.
I don’t really go on Twitter much now but even there, I’ve seen patients with FND saying that people with ME or other conditions are gaslighting them into trying to disregard or not accepting the FND diagnosis.
So if trying to fight against FND, you’re not just fighting against bad research. It’s much, much more of an uphill battle because many of the patients themselves are very happy both with the diagnosis & the treatment.
Arnie Pye
Senior Member (Voting Rights)
I was diagnosed with "Functional Bowel Disorder" back in the 1990s. In the early 2000s I had surgery on adhesions from delayed and botched surgery done when I was 13 (about 30 years before). The "Functional Bowel Disorder" was about 95% cured, which is amazing since I didn't get any CBT to cure it, just the surgery. [/sarcasm]
Unfortunately for me, the surgeon who dealt with the adhesions also seems to have had a rummage around my left kidney, which had not previously caused me any problems. In doing this he caused adhesions round my kidney which have been causing me pain for the last 20 years. I had ultrasound scans when the problem first arose but adhesions only rarely show up on scans of any kind so I was told everything was fine. I knew that if I pushed it I would get nowhere (having already had 30 years of experience of adhesion pain) so I have just lived with the pain ever since. I finally got pain relief that actually achieved something when I was 55 which helps but doesn't eliminate the pain completely.
Arnie Pye
Senior Member (Voting Rights)
Given the authors (who include Alan Carson and Jon Stone) I haven't actually read this :
A practical review of functional neurological disorder (FND) for the general physician
A practical review of functional neurological disorder (FND) for the general physician
Jonathan Edwards
Senior Member (Voting Rights)
I would be surprised, actually.
I think these signs are valid if done carefully.
It is not a question of activating reflexes so much as simple laws of levers - something we can do nothing about. To move one leg we need to do all sorts of things with our spinal muscles and muscles around the other leg simply to prevent the system twisting. Dancers and athletes learn to control one limb in isolation but this probably actually involves even more careful counteraction of other muscle groups. When a ballet dancer extends one knee already flexed at the hip while on the other point of foot muscles are contracting all over the place.
I used signs like this all the time in rheumatology although not to look for FND but to identify pain patterns and to diagnose the detail of a neurological deficit. If someone has a painful wrist passive rolling over of the hand produces elbow movement that you never see in normal people.
The problem with FND as a diagnosis is not that there are no people with movement abnormalities due to problems with higher level brain function - there are. The problems are that assuming this is conversion by another name and that anyone with symptoms that do not fit has it is inappropriate.
I have “met” people with ME and FM on Facebook who have FND diagnosis. One said the Dr at the hospital told them FND was an umbrella term for all the conditions including FM. I didn’t feel I knew enough about the subject to engage in discussion about FND with someone in that situation so I didn’t.
Peter T
Senior Member (Voting Rights)
I have an acquaintance who has been given an FND diagnosis and who understands it to be a synonym for ME/CFS.
I did not feel I knew the person well enough at the time it first arose to question what they understood about either or both conditions and so far a situation has not arisen since where it was appropriate for me to address this further.
I did not feel I knew the person well enough at the time it first arose to question what they understood about either or both conditions and so far a situation has not arisen since where it was appropriate for me to address this further.
lunarainbows
Senior Member (Voting Rights)
I’ve been given various functional diagnoses too sadly (including for stomach problems). The thing about FND specifically is how they have a well rehearsed theory about it which is (from what I can see) mostly well accepted by people and a lot of patients. For some patients, it seems to explain their symptoms & gives a degree of relief and acceptance about it.
The neurologist who saw my family member was quick to reassure them along the lines that: “these symptoms are very real. They are caused by trauma. We don’t know why this happens to people, but we do know all your symptoms are real and are happening to you. In the past patients were treated badly and not believed, but now these symptoms are believed and we want to help”. The doctor said they were shocked that my family member hadn’t already been receiving help for FND, & referred to a specialist centre which ran a FND course.
At the time this explanation rang true with my family member & rang true with me as well. It seemed to make sense. The doctor was kind about it & most importantly, had a way forward. They had a treatment option.
Even when FND (and it’s roots in trauma) was brought up for me, the neuropsychiatrist told me that they really felt I could benefit from their treatment - that they felt I shouldn’t just go to my local neuropsychiatrist department, but I had to go to their “specialist” one, that I’d need CCG funding for. This made me feel hopeful for a few minutes (really!), because they were telling me there was a unique treatment that existed that would really help me. This is despite me not actually having any of the rule-in signs of FND (I recently checked the signs again), and with a neurologist already having examined me and confirming my weakness & symptoms were in line with another (non functional) condition.
And similarly for some other people I know who were told they had FND. They were happy to have been diagnosed with a neurological condition - one that seemed to hold more recognition than ME and had some sort of help or treatment attached to it. They had regular appts with a neurologist / neuropsychiatrist too. The explanation given for all their symptoms (including symptoms like paralysis), made sense to them. (I know as I had a proper conversation about it). The thing about FND is that it 1) reassures patients that symptoms are real and should be believed and that 2) all those odd symptoms like fatigue or odd seizures or pain or paralysis all make sense now because it’s part of FND. And 3) it’s not the patients fault. It’s the brain doing things because of the trauma or other problems, that causes this. So all of this seems to make sense to many patients. I think it’s important to know this.
I do know of one person personally (with an ME diagnosis) who is really disgruntled after a FND diagnosis, but i think that’s because of serious neuromuscular disease in the family, so is much more aware of other conditions & wasn’t happy with being fobbed off. Of course there will be some people who think like that too.
the main charities for FND as far as I can see, are also very much on board with these sorts of explanations for FND as well.
So the situation with FND - both with patients, as well as charities etc - is really different compared to the situation with ME.
The neurologist who saw my family member was quick to reassure them along the lines that: “these symptoms are very real. They are caused by trauma. We don’t know why this happens to people, but we do know all your symptoms are real and are happening to you. In the past patients were treated badly and not believed, but now these symptoms are believed and we want to help”. The doctor said they were shocked that my family member hadn’t already been receiving help for FND, & referred to a specialist centre which ran a FND course.
At the time this explanation rang true with my family member & rang true with me as well. It seemed to make sense. The doctor was kind about it & most importantly, had a way forward. They had a treatment option.
Even when FND (and it’s roots in trauma) was brought up for me, the neuropsychiatrist told me that they really felt I could benefit from their treatment - that they felt I shouldn’t just go to my local neuropsychiatrist department, but I had to go to their “specialist” one, that I’d need CCG funding for. This made me feel hopeful for a few minutes (really!), because they were telling me there was a unique treatment that existed that would really help me. This is despite me not actually having any of the rule-in signs of FND (I recently checked the signs again), and with a neurologist already having examined me and confirming my weakness & symptoms were in line with another (non functional) condition.
And similarly for some other people I know who were told they had FND. They were happy to have been diagnosed with a neurological condition - one that seemed to hold more recognition than ME and had some sort of help or treatment attached to it. They had regular appts with a neurologist / neuropsychiatrist too. The explanation given for all their symptoms (including symptoms like paralysis), made sense to them. (I know as I had a proper conversation about it). The thing about FND is that it 1) reassures patients that symptoms are real and should be believed and that 2) all those odd symptoms like fatigue or odd seizures or pain or paralysis all make sense now because it’s part of FND. And 3) it’s not the patients fault. It’s the brain doing things because of the trauma or other problems, that causes this. So all of this seems to make sense to many patients. I think it’s important to know this.
I do know of one person personally (with an ME diagnosis) who is really disgruntled after a FND diagnosis, but i think that’s because of serious neuromuscular disease in the family, so is much more aware of other conditions & wasn’t happy with being fobbed off. Of course there will be some people who think like that too.
the main charities for FND as far as I can see, are also very much on board with these sorts of explanations for FND as well.
So the situation with FND - both with patients, as well as charities etc - is really different compared to the situation with ME.
lunarainbows
Senior Member (Voting Rights)
Psychological trauma - but when I read about FND, the term “adverse events” is mentioned, and further reading revealed that FND can also be triggered by physical events or trauma such as surgery, vaccination and head injury too…Although I also read that sometimes in FND there are no precipitating or adverse events too!
Arnie Pye
Senior Member (Voting Rights)
So, someone with adhesions (like me) that prevents my bowel moving normally, that can distort and crush muscles, nerves, veins and arteries, and can stick multiple organs together that should never be stuck together, is still told they have FND which, as we know, is treated with CBT?
Can I be a doctor, please? It's very well paid, and it doesn't sound that hard these days. It's getting easier all the time. No need to care about symptoms or how the patient feels, just give them a load of old flannel and tell them there is no need for them to come back because they've been cured.
It is a very seductive tale to the uninformed.
So the relevance of trauma is...?
It is interesting the way in which we seem to be in an endless loop.
Trauma. That reminds one of the Imboden, Canter and Cluff "findings" on chronic brucellosis and long term sequelae after Asian flu. They ascribed the prolonged recovery to personal vulnerability due to prior experienec.The research looks largely spurious but was introduced into the world of ME by the likes of Eisenberg, Goldberg and Wessely. What none of these members of the "great and the good "-I do like the ambiguity of the term, leaving uncertain whether the "and" is to be construed conjunctively or disjunctively- pointed out was that Imboden wrote a parallel series of papers between 1960 and 1963 (Ziegler, Imboden and Meyer) on the subject of "conversion reaction" in which he referred to the other papers as being examples of the concept. This cannot have been unknown to those who made use of the papers. "Plus c'est la meme chose, plus ca change". What's in a name?
It is a curious feature of this that the Meyer in question was Eugene Meyer II, professor of psychiatry at John Hopkins. He also happened to be a director of the Washington Post, the son of its proprietor and brother of Catherine Graham, the editor. It was a Washington Post journalist who brought the good news of McEvedy and Beard with indecent haste ,and lurid description, from London, if not to Washington at least to Los Angeles. One does wonder why.
Trauma. That reminds one of the Imboden, Canter and Cluff "findings" on chronic brucellosis and long term sequelae after Asian flu. They ascribed the prolonged recovery to personal vulnerability due to prior experienec.The research looks largely spurious but was introduced into the world of ME by the likes of Eisenberg, Goldberg and Wessely. What none of these members of the "great and the good "-I do like the ambiguity of the term, leaving uncertain whether the "and" is to be construed conjunctively or disjunctively- pointed out was that Imboden wrote a parallel series of papers between 1960 and 1963 (Ziegler, Imboden and Meyer) on the subject of "conversion reaction" in which he referred to the other papers as being examples of the concept. This cannot have been unknown to those who made use of the papers. "Plus c'est la meme chose, plus ca change". What's in a name?
It is a curious feature of this that the Meyer in question was Eugene Meyer II, professor of psychiatry at John Hopkins. He also happened to be a director of the Washington Post, the son of its proprietor and brother of Catherine Graham, the editor. It was a Washington Post journalist who brought the good news of McEvedy and Beard with indecent haste ,and lurid description, from London, if not to Washington at least to Los Angeles. One does wonder why.
rvallee
Senior Member (Voting Rights)
Very fungible. It's like pocket sand. Someone pesters you to justify your reasoning? Throw pocket sand at their face, aim for the eyes. Problem isn't solved but question time is over.
And the desperate, as most of us here have been at some point, especially early on, and made fools of ourselves, before we learned the real story.
I feel very much for patients hit with the FND label and sucked into that vortex. It is an awful situation to be in.
But I also know they are making a terrible mistake, and it has serious consequences for others. How many nice ways are there to say that? And what is their justification for helping foist that crap onto others?
Nobody likes finding out and admitting they have been used and abused to indulge some scumbag's lust for power, glory, and income. But it happens to just about everybody, at some point, in some way, and the only solution is to admit it, find out the real story, and get to repairing the damage.