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

SNT Gatchaman said:
That sounds like mindset-acronym dualism ;)

The term "functional neurological disorder" was chosen as a replacement for conversion disorder or hysteria that was acceptable to patients. I think that the term does reinforce the mindset though because it implicitly expands to "functional-but-nothing-actually-structural-or-progressive neurological disorder". That's where much of the smiling and winking is occurring.

Stone, Carson, Sharpe et al. wrote in What should we say to patients with symptoms unexplained by disease? The “number needed to offend” (2002, BMJ) —



Referencing ‘Hysteria’, ‘Functional' or ‘Psychogenic’? a Survey of British Neurologists’ Preferences (1991, Journal of the Royal Society of Medicine) —
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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 When you find yourselves several levels below the ethical level of the legal profession, where just is most often superseded with what's technically legal, you can't not know that what you're doing is extremely wrong.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.
 
Jonathan Edwards said:
'Conversion disorder' explicitly describes an illness in which your leg gives way because you cannot get rid of the bad thoughts due to being bullied by your elder sister when you were four
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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!
 
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 am not comfortable with over-the-top attributions of near criminal activity to the whole medical profession.

Nor am I comfortable with people with ME/CFS saying the term FND should not ever be used, and that people diagnosed with, and content to accept the name, FND for their condition are being fooled. People with medical conditions that are a puzzle still need to have some sort of name to give to their condition when explaining it to others, and if they are content with the name that has been applied, who are we to criticise.

Surely exactly the same arguments could be made for ME/CFS, CFS etc. I think a lot of posts on this thread that are railing against the term FND could equally be read with the term ME, CFS or ME/CFS substituted for FND. But we would be rightly cross if people who don't have ME/CFS declared that we are being fooled and it really means psychosomatic/maligerers/conversion etc.

I don't think the problem is the name, for either condition.

I think a big problem is that anyone with any unexplained physical condition, whether it's labelled ME, CFS, FND, MUS, MUPS, BDD, SSD and a host of other labels, is treated with the same therapeutic approach - assume it's psychosomatic and prescribe CBT and exercise. And having any of these labels on our medical records will, in some clinicians eyes, spill over into their approach to other medical problems we may have, leading to lack of proper care and missed diagnoses.

There is also the problem of clinicians with a particular favourite among all these labels attaching them to everyone whose symptoms and signs they can't explain with tests. So we see people with Long Covid being diagnosed by any one of the labels, and again, the attitude of some doctors is to dismiss and/or send off to therapists of one sort or another, and hope they won't come back.

The broadening of the term FND to include LC, CFS, etc, is just another variation on the broadening of ME/CFS to include anything unexplained that causes fatigue, as in the Oxford criteria. The problem was not the name, it was the broadening of who it referred to and the psychosomatic attribution. As Sharpe did to ME/CFS, so his pupils Carson and Stone have done to FND.
 
Jonathan Edwards said:
I agree in principle and do not underestimate the harms.

The problem is not the term but the mind-set of many medical professionals. Suggest a way to change that mindset X and we are home and dry but that is not a reality. The fight is against a state of mind, not so much an acronym.
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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.
 
dave30th said:
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.
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Well, for seizures, most standard grand mal epileptic seizures are idiopathic. So the FND ones couldn't be called idiopathic seizures.
 
Hutan said:
The gold-standard Hoover's sign thing sounds pretty messy. So, if someone with a positive Hoover's sign and a detectable lesion and typical signs, the Hoover's sign is ignored as irrelevant. Or, depending on who the doctor is, you get diagnosed as having a functional overlay, on top of your MS or Parkinsons.
If someone has a positive Hoover's sign and no detectable lesion (perhaps because of the inadequacies of the technology or the staff), they are diagnosed with FND. And someone with no positive Hoover's sign and no detectable lesion can still be diagnosed with FND, depending on whether the doctor believes in FND or not as well as whether the person in front of the doctor looks like the type of person who gets an FND.

I've wondered before about the distinction between Tourettes and functional tics. The explanations for how they are differentiated seem very vague - there is no diagnostic test. And yet one has credibility and the other does not.
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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. ?
 
Jonathan Edwards said:
Just as it doesn't matter to Hannah that the engineers have this daft idea that there are green men in the fridge it needn't matter that at least a good number of doctors think FND is bad thoughts...
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It does matter to Hannah, because if she knows the fridge repairers have the 'green men in the fridge' idea, she can choose a different fridge repairer who she believes is likely to think more rationally about a range of things. It also matters because if people believe in green men in the fridge, they will fund research on green men in the fridge, and more people will be trained in the idea of green men in the fridge - rather than in making fridges that have thermostats that work.

rvallee said:
No one has any issues with the label. It's the ideas underneath that are wrong, and we know that part of the ideology has settled on this particular label precisely because it's the one that most easily fools people into thinking they're agreeing to something they don't actually agree with. Which is something that is openly admitted in the literature.
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This is the problem with the 'functional' labels - the consumer has no idea what mindset the doctor they are dealing with has, and, as @tuppence points out, in many countries people have the right of informed consent. At least in ME/CFS, the BPS people tend to identify themselves by using CFS or CFS/ME. I think the issue of informed consent (including being given clear information on benefits and harms, and on different reasonably held views) is one that we should keep in mind more in advocacy - there are strong laws and the FND literature makes it clear that doctors are not adequately conveying uncertainties to their patients.

This issue of consumers making informed choices is why I think 'idiopathic' is an appropriate term - it is neutral, it makes clear that the cause is currently unknown. It conveys a completely different mindset. The fact that there are credible illnesses with the idiopathic label is helpful. Then consumers can choose to work with a doctor who is clear that she doesn't know the cause and will keep an open mind about it going forward, or to work with a doctor who believes that the cause is probably psychogenic but is using a term that hides that fact, for whatever reason.

Jonathan Edwards said:
Well, for seizures, most standard grand mal epileptic seizures are idiopathic. So the FND ones couldn't be called idiopathic seizures.
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They really could. Because that would be a fair description of what the doctor knows for a fact. There are seizures and the cause is not known.

Of course, it depends on whether you believe the cause of the "FND" ones has not yet been found, or if you think they are psychogenic. What I have seen of the literature suggests to me that there are great gaps in knowledge and technological capability which could mean that someone with seizures but for whom no evidence of abnormal electrical activity in their brain has yet been found really does in fact have a non-psychogenic cause for their seizures. For goodness sake, people with brain injuries are given concurrent diagnoses of epilepsy and psychogenic non-epileptic seizures - how often is that likely to be true? Because of the substantial harm arising from putting a psychogenic label on a person when it is not warranted, I believe that when there is any doubt*, it is best to use a label that does not suggest a conclusion that is not supported by evidence.

* And I think, for many cases of 'psychogenic illness', there are grounds for doubt. Where/if there are treatments that are credibly shown to be effective in curing a psychogenic illness, then fair enough, a definitive label is useful. And if you want give it a name that isn't 'hysteria' so Mr Bloggs doesn't feel bad about it, then that's absolutely fine with me.
 
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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 —

More specifically, cardiac symptoms can be a presenting symptom of an underlying psychiatric disorder, including depression, anxiety disorders, bodily distress disorder, posttraumatic stress disorder and substance misuse. A panic attack is a common reason for a young person to present to hospital with chest pain and is characterised by severe anxiety associated with signs of autonomic arousal, including palpitations or tachycardia, sweating, shaking, dry mouth, difficulty breathing, and chest pain. Treatment involves explanation of the physiological responses in anxiety followed by cognitive behavioural therapy (CBT) and/or a selective serotonin receptor uptake inhibitor (SSRI).
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Predictors of ongoing chest pain are female sex, a higher total number of symptoms and high levels of hypochondriasis.
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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!
 
tuppence said:
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.
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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.
 
Jonathan Edwards said:
Well, for seizures, most standard grand mal epileptic seizures are idiopathic. So the FND ones couldn't be called idiopathic seizures.
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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.
 
rvallee said:
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.
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Like sausages and democracy, what actually happens behind the curtain in medicine can be quite ugly.

–––––

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.

Once again, add just one word, and everything changes.

Recurring chest pain and other cardiac symptoms that cannot be adequately explained by known organic pathology are common and can be associated with substantial disability, distress and high healthcare costs.
 
Eddie said:
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.
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Even the 'non-epileptic' isn't needed. As far as I can see, in some cases at least, there could be epileptic brain activity that isn't being identified by the technology used. If the abnormal electrical activity is not on the surface of the brain, it is not necessarily being picked up.

So, just 'idiopathic seizures' - the problem that is happening and the fact that we don't (yet) know why.
 
Eddie said:
How about idiopathic non-epileptic seizures?
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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.
 
I wouldn't want to tell people asking what is wrong with me that I have idiopathic ME or idiopathic ME/CFS. Most non medical people probably don't know what idiopathic means, it adds nothing to my explanation of what's wrong, and sounds too much, to the uneducated ear, like 'idiotic'.
 
Hutan said:
But things are not as clear cut as that. There are papers that throw a lot of doubt on the accuracy of diagnoses of psychogenic seizures. And, in a post further back in this thread, I referred to a paper on neurogenic stuttering:

Neurogenic Stuttering: Etiology, Symptomatology, and Treatment, 2021


The paper concluded that


That paper actually supported the idea of a category of psychogenic stuttering as well neurogenic stuttering. The criteria used to distinguish the two sorts of stuttering included these predictable and concerning items:



For goodness sake, "after a short period of therapy rapid and satisfactory progress is noted" as a criterion for psychogenic causation. Perhaps some swelling went down and a bit of the brain was able to function properly again. Perhaps the patient just wanted to say something encouraging to the therapist. Perhaps the therapist just heard what they wanted to hear.

Health care systems get stuff wrong. They use the wrong sort of scans to see things, the person who looks at the scans was distracted. Yes, clinical laziness, a lack of money for scans, overworked staff. A family member of mine was diagnosed with a stroke last year - two months later someone had another look at the scan, ordered the sort of scan that showed the problem better and worked out it was something else that could be treated. I've spent weeks and weeks in hospitals over the last six months supporting the family member; a lot of the young doctors are clearly floundering around, with some of them making up random stuff to cover over their lack of knowledge.

Even with meticulous assessment, there are some causes of neurological impairment that still cannot be reliably picked up non-invasively. Given that, that idea that FND diagnoses must always be made confidently (in order to cure the patient) is unethical.
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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..:ill:
 
Found one @Avro quoted @bobbler this morning

Arvo said:
THIS

(@bobbler, I wish I could triple-like that whole post)
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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)
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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? :jawdrop:"
 
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