Patient submission to BMJ: "I feel I am missing a piece of the puzzle", about FND

Andy

Andy

Retired committee member
Rhiann Johns describes what it is like to live with functional symptoms and how they affect her life

For years I had experienced complex, unexplained symptoms. Symptoms such as frequent episodes of dizziness and vertigo, and trembling and pain that was concentrated in the legs. I had many tests, but none supplied answers. Often the symptoms were blamed on anxiety, or they were “all in my head.”Eventually I was given a diagnosis of functional neurological disorder. Functional symptoms cover medical symptoms when no physical cause is apparent. Although there is no physical evidence of the disorder, the symptoms are no less real and can be just as debilitating as symptoms with a known cause. I have tried anxiety management courses, deep breathing, and relaxation exercises—none had any effect.

What makes this condition so hard is living with symptoms that can’t be seen, yet they are real to me. People’s responses often make me feel that I am imagining the symptoms or making them up, which makes me think that I am failing or have done something to cause these symptoms.
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https://www.bmj.com/content/369/bmj.m1068

Obviously it references Jon Stone's website...
 
Psychological support is important for patients with functional neurological disorder, but acknowledging that the physical symptoms are real is also important
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This seems like a reasonable comment. It's just about support. So we should view it as somehow conciliatory to how people who've been labelled with FND/ME have a real illness but somehow psychological support is the important necessity and the only help available.

Maybe some people do need some extra support psychologically at times for this as for anything else they might experience in life but how I see it is psychological support in the form of reassurance of the reality of an illness experience just falls under duty of care if you're a physician and if you are family or friend it falls under ordinary support of the usual variety (which if not undermined by the BPS but supported should not be too much of an issue).

So what I'm trying to say is that this psychological support is presented as some sort of special function and is offered because people with FND have this special need. I just don't see that. If medicine acknowledges that they don't know what they don't know and provides what medical support they can for symptoms it's likely for many that they don't need any sort of special psychological support.

Also, this sounds like a piece written specifically to bridge the divide between the bio and psych positions on illnesses that have unknown etiology. When you read the 'what you need to know' section it reads like there is some sort of tacit acknowledgment of a bio position but without coming out and saying so. So that it can be read that way but they can keep their own counsel by not disclaiming previous ideology and not having to state outright anything they don't actually believe.

But of course a patient wrote it so all of my surmising is all nonsense. They (BPS) had nothing to do with it.

Although there is a little parting of the curtain when she says:

It is a condition about which much is still unknown. Online resources have helped me to understand the condition a little, but the main thing I have learnt is that even though my symptoms cannot be seen or detected they are real to me
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So if much is unknown I'd like to know a bit about what we do know.
I think we can all see what the 'real to me' implies.

And then there's this:

Although symptoms are functional, they are no less real than those caused by other conditions, and acknowledging this can help
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This seems to be a tautology. FND's are conditions (ie not diseases) so . . . symptoms are functional but no less real than other functional conditions. :rolleyes:
 
Psychological support is not offered to patients with MS unless they have psychological symptoms like anxiety or depression and ask for it. It has no place in a discussion of the needs of patients labelled with FND

This sounds like one of the patients who have accepted the FND diagnosis out of ignorance and misplaced trust in the medical profession. They still feel their symptoms are physical but believe the rubbish they have been fed.

We need proper neurological investigation of those people who have been abandoned to an FND diagnosis which is the end of all testing and stands in the way of any hope of treatment and understanding.

To finally ditch the continual renaming of hysteria to make it palatable till people realise it is the same old 19th century "science" is the only demand worth making.
 
Mithriel said:
Psychological support is not offered to patients with MS unless they have psychological symptoms like anxiety or depression and ask for it. It has no place in a discussion of the needs of patients labelled with FND

This sounds like one of the patients who have accepted the FND diagnosis out of ignorance and misplaced trust in the medical profession. They still feel their symptoms are physical but believe the rubbish they have been fed.

We need proper neurological investigation of those people who have been abandoned to an FND diagnosis which is the end of all testing and stands in the way of any hope of treatment and understanding.

To finally ditch the continual renaming of hysteria to make it palatable till people realise it is the same old 19th century "science" is the only demand worth making.
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just to add there was never any science . it was always just the smug opinions of poorly educated clowns with more ego than intelligence .
 
alktipping said:
just to add there was never any science . it was always just the smug opinions of poorly educated clowns with more ego than intelligence .
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Yes indeed. The early papers about FND are full of caveats especially about movement disorders which are difficult to diagnose but these were just quietly dropped over the years instead of being researched. If they were truly interested in patients, rather than their theories, they would have looked closely to find how to differentiate.

Myotonic dystrophy specialists are complaining that too many neurologists do not seem to be able to diagnose the disease properly. There is a genetic test for this and it is a disease that runs in families. When they diagnose a patient they will then test family members. They are finding people who were never diagnosed and this will get much worse as FND becomes more and more popular.
 
My favorite part is that the entire premise in FND is that it provides an explanation and here is this positive perspective essentially saying it's kind of nice to be "validated" (though actually lied to differently but whatever, details) but doesn't explain a damn thing, in fact opens up many more questions, all of which are fundamental. Exactly like how ME patients may occasionally have good comments about CBT or similar stuff while also saying it doesn't make any difference. So it's more of a distraction than anything useful. It's a bit like praising a nutritional alternative but acknowledging it leaves you just as hungry. Or a weight loss program that had positive reviews even though participants gained weight.

So this letter actually invalidates the premise of FND, but will actually be perceived as and used as validation for its core ideological foundations. Because all that's matter is that it's praised, that it doesn't do anything meaningful makes no difference. Somehow this will get lost entirely because the substance is irrelevant and so is the actual evidence. It's a belief system and the facts don't matter, only positive anecdotes and fraudulent misrepresentation of null results do.
 
I am seeing more and more people who say they have a functional neurological disorder in newspaper articles and social media, so there must be lots of people getting diagnosed with it.

It's strange, because I would be ashamed to tell anyone I had been diagnosed with FND. They can't know what it means. Or am I the one that is wrong and it just shows my prejudices?
 
Mithriel said:
I am seeing more and more people who say they have a functional neurological disorder in newspaper articles and social media, so there must be lots of people getting diagnosed with it.

It's strange, because I would be ashamed to tell anyone I had been diagnosed with FND. They can't know what it means. Or am I the one that is wrong and it just shows my prejudices?
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Oh the people who are content with a FND "diagnosis" are absolutely not aware that it 100% means conversion disorder and are offended when that is pointed out, will absolutely argue that's not what it means. Which is the whole point. They appreciate that for once they aren't sent off and not told they're imagining it, by people who absolutely mean and believe that they are imagining it and will even lie about lying about it, because that's what the belief system of conversion disorder requires. With the specific intent of building trust so they more effectively abuse it.

FND marketers have even taken to use the same language we've been using for years, "campaigning" about how FND is "real" (by which we mean it's how we describe it), which would make Orwell spin in his grave fast enough to power a generator. Where is it again that they're doing a campaign and looking for ambassadors to promote it? Norway, right?

Somehow even the concept of perfidy doesn't suffice here to capture the grotesque nature. This is worse than perfidy, as this isn't war and nobody should expect any treachery. It's as disgusting as any of the worst acts of bad medicine, and boy is that a massive file already.
 
The one person I know personally with FND, regards it as a related condition to ME, if not a synonym, and believes that they themselves have a biomedical condition. I don’t feel I know them well enough to push the issue.

I think doctors like the term because many patients don’t argue because it sounds like a real biomedical condition.
 
Peter Trewhitt said:
The one person I know personally with FND, regards it as a related condition to ME, if not a synonym, and believes that they themselves have a biomedical condition. I don’t feel I know them well enough to push the issue.

I think doctors like the term because many patients don’t argue because it sounds like a real biomedical condition.
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I have come across this on forums where people have been so pleased with getting this diagnosis. I don't feel i can destroy them by telling them what I know, then I wonder if that is wrong because they will feel foolish when they find out. It's like seeing your best friend's boyfriend with someone else. The dilemma is another thing I have against FND doctors. I have enough to worry about without having to work out the morality of what I am doing.
 
Mithriel said:
It's strange, because I would be ashamed to tell anyone I had been diagnosed with FND. They can't know what it means. Or am I the one that is wrong and it just shows my prejudices?
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I think a lot of 'em have no clue they're simply being "managed". However, there are some people who will be very happy to accept and advertise it.

One of the very many reasons I don't facebook anymore, discussions with people insisting their diagnosis is related to some past trauma. I've seen people do this with ME too, not just FND.

If you do have the audacity to point out that not everyone has been traumatised or that ME or FND might have a biological cause then you'll quickly find yourself accused of "attacking" a poor traumatised person (who proves themselves well able to attack you for having a different opinion).

It's okay for them to sweepingly claim all causes are down to trauma and those who don't want to accept that are in denial. That's not in the least bit harmful to you - they're helping you! If you state that you personally believe something different about your own case, & it doesn't matter how you phrase it, then that's attacking them, bullying a victim......

Some people like being labelled like this. They think more people should be. If only you would just accept it......:banghead:
 
Same thing for me with social media I feel I shouldn’t be questioning people’s diagnosis but then you see posts where they’re saying they have diagnosis of Fibro and FND which is the umbrella term which I know is dubious type of stuff pychosomatic protagonists would tell someone and others that I struggle to get my head round like someone saying they have ME and MS I’m not sure if that’s possible but it could be my lack of knowledge not theirs.
 
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