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

That's actually remarkable. A majority think it's a bad label, but it's the most effective at getting patients to agree to something they don't actually agree with, so it became widely adopted. They chose a term they consider bad in large part because it's more effective at being unethical. Good grief. The wildfire this would lead to in the legal profession if something like this ever got suggested. When you find yourselves several levels below the ethical level of the legal profession, where just is most often superseded with what's technically legal, you can't not know that what you're doing is extremely wrong.

And talk about guilty conscience: "number needed to offend" sounds a lot like a conference on how to use racist slurs that don't sound racist but mean the same thing wink wink nod. I have no doubt there were several similar discussions in the smoky boardrooms of tobacco companies when they were trying to extract as many billions from their products as they could before, well, they could only extract fewer, as no one really faced any real consequences for it anyway and the industry is still very profitable.

This is truly a "are we the baddies?" moment, and the medical profession here has shown itself to be on the wrong moral side of a freaking comedy sketch show.

 

I thought it was that your hand has unexplainable tremors at 50 because mommy slapped it when she caught you playing with your little pee-pee when you were seven. The shame you've carried has finally expressed itself decades later!

 

But it seems the term idiopathic is itself neutral on the issue of structural vs non-structural issues. I'm not sure why it's inappropriate for these ailments just because in cases of some idiopathic conditions there are structural features.

 

Given everything discussed generally and on this thread, with stuff like "numbers needed to offend" and other blatantly offensive and unethical things being openly discussed in the literature and immortalized on the Web, I realized that a major reason why so many MDs dislike social media is for pretty much the same reason dictators hate and try to stifle free media: it exposes what they do, shows their words and actions. There are other reasons, some of them valid, but this is the main one.

Almost none of this ever gets discussed in traditional news. There is simply no place for this, it's not a topic that sells and disability being the last acceptable form of bigotry, there is a general consensus that it's good anyway, as long as the facts remain covered up. So it's largely kept within social media, the only place where mistreated patients can discuss not just the impacts on their lives, but the very facts behind them.

For sure there is a problem with disinformation on social media as well, but given how strongly it overlaps with traditional psychosomatic ideology, it's not as if the issue is over disinformation or pseudoscience, it's over which forms are acceptable. Both of them pretty much reflect the huge gap between supply and need in the end, health care remains mostly a privilege handed out in a haphazard way outside of the most common stuff.

 

I agree the issue is not the label/diagnosis but the mindset that produces it and (I would add) also the mindset with which it is received and interpreted by those to whom the label/diagnosis is applied to.

I suggest that the tool to change that mindset already exists but is a much ignored or at least only partially used tool in the interactions between Doctors and Patients. It concerns the need for Doctors to have the patients informed consent to treatment as only the patient, as set out in law and ethical medical practice, can decide the harms/benefits risk ratio in any recommended medical way forward that is acceptable to them.


Doctors have the power as part of their medical practice to diagnose and issue labels to describe patients symptom profiles. However in a situation where there are different medical opinions and attributions under the same label such as those readily discernible in the medical/science literature highlighted in this thread, the law requires Doctors to explain their diagnosis/labels and the evidence they rely upon to justify their own Opinion and attributions.


Importantly the law requires they must also explain to the patient all the other ‘medical opinions’ put forward in the entirety of the medical literature which pertain to the patients symptom presentation and the risks associated with any treatment that any of the medical opinions/attributions including their own may have.

It is clear to me from the comments on this thread that for both Doctors and patients the diagnostic label and the attributions behind it is the first step in suggesting the treatment approach and falls in my view within the medical ethics regarding gaining ‘informed consent’. It should be explained side by side with all other attributions other Doctors may apply in their Opinion to the same/similar symptom presentations under the medical label settled on. Wink, wink and knowing looks between Doctors only indicate deception of the patient is taking place, which has no place in medicine even if done with good intent, given that all actions have harms as well as benefits.

Here we come to the second part of ‘informed consent’ and that is that the choice of medical opinion and any subsequent treatment is for the patient alone to make having been given all relevant information including that on benefits and harms.

The Doctor cannot and should not make the decision for the patient, their role is to advise and give full information. Too often they make the choice for the patient starting with choosing a particular diagnostic ‘opinion label’ often hiding their particular interpretation of that label/diagnosis. Alternatively they may invent another label altogether new to Medicine or just refuse to discuss their diagnosis or other medical opinions. The extremity reverted to by some Doctors who have difficulty with a patient not accepting their interpretation of a diagnostic ‘label’ such as in severe ME, is ‘Sectioning the patient’ thereby removing their legal rights to choose so they can impose their own choice.

Medicine and ill health are complicated and for the ill patient they just want it all taken care of. I understand that ‘mindset’ and have a great deal of sympathy for it, but then you must bear the fact that others may very well misuse the trust you place in them.

The law and medical ethics gives the patient the power of ‘informed consent’ for a reason. My family found it very necessary to use that power in our journey with ME, seeking out full information (often routinely denied) and those who respected our rights to ‘choose’ the diagnosis/label and treatment we wanted from the entirety of the various ‘medical opinion’ and attribution around ME that was available.

It is difficult for Doctors too and for some the prevailing mind set endemic in the profession prevents them from doing the job or providing the service they feel ethically and legally prompted to provide.

My late wife had a very difficult final year with ME. At the end she faced a choice between her asking for hospice style care or her being ‘Sectioned’. She stood (or rather lay) firm in her right to ask for hospice style care, backed up by medical experts in ME. Our GP practice in the end after my pointing out they were obstructing her lawful and ethical choice of accepting the expert ME diagnosis and treatment recommendations by trying to insist on their own alternative psychological attribution and preferred treatment recommended to them by local Consultants who had never met my wife, agreed, like all who actually met my wife that she was fully competent to understand and choose the diagnosis and treatment she wanted from the different medical opinions and attributions describing her ill health.

I think that this very difficult encounter between us, the informed consent and legal ramifications I raised with regard to the prevailing local medical opinion and the actions they were asked to take in caring for my wife by the local dominant medical opinion of ME, had a part to play in the GP’s decision very shortly after to close the GP practice and take early retirement from the profession. We had chosen that practice because they specifically stated in the description of their service that they would always respect the patients choice of treatment. They did not in the end let us down but the pressure around us all from that medical culture/mindset around ME was intolerable at a very difficult time.

Two good Doctors who comprised that GP Practice were lost to the profession and to patients.

This is why the meaning(s) behind labels are so important to be communicated and understood by all as is the recognition of who has the right to choose, which is in the end the patient having been given all the information. In law and medical ethics only they can choose what happens to them if they are judged competent to choose. Competence is usually defined as being conscious and capable of making your choice known.

For all our sakes, it is long past time for the ‘medical mindset’ to adjust to what the law and ethical practice asks of them. After all medical professionals should be more than able to deliver lawful and ethical health care given their high intellectual capacity and if they are supported by being trained and regulated meaningfully by those who grant them a licence to Practice.

 

Well, for seizures, most standard grand mal epileptic seizures are idiopathic. So the FND ones couldn't be called idiopathic seizures.

 

One thing that intrigues me in discussion of the 'rule-in' signs and calling them 'positive signs' is whether they are actually rule-in and not rule-out?

Wikipedia description of Hoover's sign:
"Hoover’s sign of leg paresis is one of two signs named for Charles Franklin Hoover.[1] It is a maneuver aimed to separate organic from non-organic paresis of the leg.[2] The sign relies on the principle of synergistic contraction.[citation needed]

Involuntary extension of the "normal" leg occurs when flexing the contralateral leg against resistance. To perform the test, the examiner should hold one hand under the heel of the "normal" limb and ask the patient to flex the contralateral hip against resistance (while the patient is supine), asking the patient to keep the weak leg straight while raising it.

If the patient is making an honest effort, the examiner should feel the "normal" limb's heel extending (pushing down) against his or her hand as the patient tries to flex (raise) the "weak" leg's hip. Feeling this would indicate an organic cause of the paresis. If the examiner does not feel the "normal" leg's heel pushing down as the patient flexes the hip of the "weak" limb, then this suggests functional weakness (sometimes called "conversion disorder"), i.e. that effort is not being transmitted to either leg."

So to me 'if there is no pressure in the heel of the normal limb' that is suggested to be 'rule in'.

But I can't help thinking of other explanations for 'no pressure in heel of normal limb' including if it is something that is new or intermittent or both. It surely just means that you can control not flexing your 'normal' limb.

Surely the test is more about what they know about the conditions where the heel does press down on the normal limb?

Particularly if - and I don't know this has always been the case - the assumption is if that doesn't happen there is nothing organic and so it wasn't looked into therefore nothing was found etc.

It feels relevant because 'rule-in' as a term obviously makes things sound like it isn't a bucket 'once other things have been ruled out', but this sign sounds like it could be just as easily termed as 'ruling out' just like when you do blood tests to see whether eg low or high iron was an issue or anything else if someone was out of breath etc. ?

 

As a side note for this thread the label "functional" is used with the same implication in many different medical specialities, not just neurology. Here for example is a recent article from the cardiology literature.

Identifying and managing functional cardiac symptoms (2021)
Jonathan Rogers; George Collins; Mujtaba Husain; Mary Docherty

Recurring chest pain and other cardiac symptoms that cannot be adequately explained by organic pathology are common and can be associated with substantial disability, distress and high healthcare costs. Common mental disorders such as depression and anxiety frequently co-occur with these symptoms and, in some cases, account for their presentation, although they are not universally present. Due to the frequency of functional cardiac presentations and risks of iatrogenic harm, physicians should be familiar with strategies to identify, assess and communicate with patients about these symptoms. A systematic and multidisciplinary approach to diagnosis and management is often needed. Health beliefs, concerns and any associated behaviours should be elicited and addressed throughout. Psychiatric comorbidities should be concurrently identified and treated. For those with persistent symptoms, psychosocial outcomes can be poor, highlighting the need for further research and investment in diagnostic and therapeutic approaches and multidisciplinary service models.

Link | PDF (Clinical Medicine) [Open Access]

Which includes passages such as —

However, cardiology is probably a little further ahead of neurology as the penny is starting to drop that women have a different structural cause for angina that wasn't previously visible and considered functional: ie microvascular dysfunction rather than more obvious coronary artery stenotic lesions. Guidelines have now been made to correct this as new understanding develops. I don't think the diagnosis "functional cardiac disorder" would be in common use, rather people will instead by diagnosed with "anxiety" or simply "non-cardiac chest pain (NCCP)" so there's less likelihood of us upsetting another patient group!

 

I'm so sorry to read the experiences that your wife and you were put through @tuppence. How lucky you were to have each other as a team. I agree with everything you say.

 

How about idiopathic non-epileptic seizures? Because we don't know the cause of FND, I don't think the label should be particularly specific. I think a label that implies a neurological problem of some unknown cause is most appropriate. As with any idiopathic condition, we don't have to list out all the things it is not caused by, because it the patient had those things they would have received a different diagnosis.

 

I think the mistake is to assume that we have to have one rigid method of classification.
If the seizures are non-epileptic, which in some cases at least that can be identified by ways in which the attacks differ from epileptic attacks, then they can be called non-epileptic.

Idiopathic is no use because vast tracts of medical problems are idiopathic. Epilepsy is mostly idiopathic, as I said.

There is never a black an white distinction between finding a cause and not. We may have some evidence of mechanism - like EEG discharges, but we still often have no idea of 'the cause'.

Idiopathic won't work because it goes far too wide and doesn't actually mean no evidence of mechanisms. It means no knowledge of primary cause - and of course that isn't a brilliant idea because we don't believe in single causes of medical events. In fact the word has almost entirely dropped out of usage because it has such an unclear meaning.

All these words accumulate meanings and often a load of overlapping meanings that are often a muddle. Trying to fit them to another category is if anything the whole problem with FND - twisting a meaning to a new group of people.

 

SNAP!

Like chewing from opposite ends of a string of spaghetti we find we meet in the middle!

There's been a few posts on the forum over the last week where the writers have demonstrated the same symptom I have, not in the topic but in the physical act of typing the words. I think one of them was ne of @Trish posts where she wrote "heard heard" - can't remember the members of what they wrote.

I've only had this symptom, in a pronounced way, since become severe ME, it wasn't noticable when I was mild/moderate. When it appears my speach, I'm slurring my words, repeating words, stop suddenly - brain completely blank etc. Everyone with this level of 'fog' will know. The sound and light snesitivvvty sysmptoms first arived around the same time.

when I'm writing in that state of brain fog (as I currently am) i repeat words and don't notice it unless I've read it back at least of couple of times. I know that when I see that, it a red flag showing I'm about to crash and I need to stop immediately, dark room no sound until the fog clears, a few hours or a couple of days. That's also when I beome light and sound sensitive.

Example:

I went to aunty mary's mary's this afternoon for tea.

I call this symmptom my brain stutter. As I hadn't ever in 12 years come across any mention of it in connection with ME in the literature I just thought it was peculiar to me. It;s one of the reaons I mostly ow use assistive technology except when I slur the damn thing can't understand me.

While having my morning cup of tea, i thought I wonder............ so I googled brain stutter and look what I came up with in less than a minute!

The mysterious cause of stuttering in the brain - BBC Future (2020)

Cna't understand half of waht's in there at the moement but picked up certain aspects. Haven't followed the links not up to it.

Issues discussed:

Slow circuitry, genetics ( mutations in four genes – GNPTAB, GNPTG and NAGPA from the Pakistan studies, and AP4E1 from the clan in Cameroon – that he estimates may underlie as many as one in five cases of stuttering.), inherited, dopamine receptors energy prodction and hearing.

"until one determined researcher found that there were fewer of the cells called astrocytes in the corpus callosum. Astrocytes do big jobs that are essential for nerve activity: providing the nerves with fuel, for example, and collecting wastes. Perhaps, Drayna muses, the limited astrocyte population slows down communication between the brain hemispheres by a tiny bit, and it’s only noticeable in speech."

I've deliberately left this post in it's orignal underditd stae so the full extent an be seen. Whe you see pwME stating that it's taken hours to type the content of one post this is no doub t one of the ereasons fo r it., I'm off to rest for a while..

 

Found one @Avro quoted @bobbler this morning

CAnt' work out how to do this so have copies and pasted instaead from the thread UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023 | Page 22 | Science for ME (s4me.info)
"
bobbler said: ↑
Even down to a man [from the MEA] kindly writing that aren't they being generous picking through with her to help her to decide which comments they deem 'constructive' after words that were coercive to ensure noone felt comfortable replying, nevermind the "shut the heck up if you are even thinking of criticising this, I will think you are ?@**@ " tropes.

What sort of researcher gerrymanders replies using abuse then then gets away with persuading their funder, responsible for those who have just had said words levied at them, that it's still research if they pick and choose which of the few comments anyone still dared to leave they might choose to and cherry-pick to digest and accept? "

 

I always blame the spellchecker.