-
New Forum Software Installed (Still a few issues but reopening the forum) More details.
Functional Neurological Disorder (FND) - articles, social media and discussion
- Thread starter Andy
- Start date
Point 1. And any history of that ‘rule in’ test (Hoover ?) - including anything else it might have been used for prior to be ‘found useful for FND) is a very good point to ask for focus on
Yep any excuse for ‘rule in’ seems like hunting out a ‘cover’ for dropping someone into a bucket they don’t intend to allow to be disproven.
The only area of medicine that isn’t really looking at something to cure or understand it to cure it, but as a label to disregard anything else about said person as ‘don’t look into’ instead of having to just go with the face doesn’t fit/don’t like this person on its own and that being less of a cover liability-wise for de-human ing them by removing access to human rights
Even hypochondriacs can get cancer I assume at the same 50% lifetime rate as anyone else of course and yet I have never ever seen a paper of concern about how that is managed by this area hence I assume their ‘concern’ isn’t patient health in its entirety
Dear #NEISvoid I’m looking for examples of people who were given an #FND diagnosis that later turned out to be something else. Will really help @drclairetaylor @Sunny_Rae1 @DeansKevin @angryhacademic in our attempts to challenge this label #EDS #HSD #MCAS #POTS #MECFS #LongCovid
Andy
Retired committee member
That is a request from June 2022.
Didn't spot that.
I wonder why it's come up again
The classic rule-in signs have been around for decades--Hoover's sign was described 100+ years ago. But conversion disorder was not identified as a "rule-in" diagnosis--it's just that Hoover's and other signs--like a tremor that changes when the person is distracted--were used in that way. It was codified in DSM-5. When that was released in 2013, the section on conversion disorder included "functional neurological symptom disorder" as a synonym. And the diagnosis no longer required identification of trauma or psychological distress, but it did require clinical evidence of inconsistency with known neurological disease--that was a way of say that a "rule-in" clinical sign like a positive Hoover's sign was needed for diagnosis.
Good to have you here JoClaire
I think it is really hard to prove that ME/CFS isn't an FND while there is no diagnostic biomarker. Even then, then there are examples of people with clearly physical ailments being diagnosed with a functional overlay, either because their physical diagnosis came after the FND one, or because a health professional thinks that they are complaining more than their physical condition warrants. Some of the published academic material on FND have suggested that things like being a young woman and having a stuffed toy while in hospital are signs of FND. It's pretty hard to argue against something so vague.
So, I personally prefer not to answer the question 'why isn't ME/CFS an FND?'. Instead I think it might be more useful to ask 'is there any benefit to anyone from classifying ME/CFS as an FND?'. There is ample evidence that the treatments that an FND practitioner prescribes - exercise, CBT, mindfulness - don't work. There is also ample evidence that putting an FND label on people results in many harms, including a lack of access to diagnostic tests, stigmatisation in the medical system, withdrawal of support from family who are advised by health professional to practice 'tough love', loss of trust in the medical system (which can have massive impacts such as unwillingness to participate in vaccination programmes), experimentation with expensive and risky alternative treatments, depression and suicide as a result of feeling a failure and/or not being believed, and disease exacerbation due to attempting to solider on. So, for the patient, the outcomes are, on average, negative.
For society, we have seen enormous amounts of money poured into FND research and clinical care that does not achieve anything more useful than might have been expected with no treatment and the passage of time. We are hopelessly unprepared to cope with the large increases in ME/CFS numbers due to covid-19. So, for society, the concept of FND appears to have involved a lot of kicking the can down the road, delaying properly addressing illnesses with unknown pathologies. That can have short term benefits, such as allowing people to go on about their normal lives not worrying about Long Covid ME/CFS - until of course they or their loved one gets it.
For the FND proponents, the concept is of course their source of income, reputation and, probably, feelings of superiority. There is a clear benefit to them from including ME/CFS, including Long Covid ME/CFS, in the FND bucket. For the insurance companies that fete the FND proponents, FND increases profits, by ensuring that people are classified as having a mental illness, with the lower payouts that go with that. As for society, that's creating problems later, but insurance executives interested in bonuses probably aren't thinking long term.
I think it is really hard to prove that ME/CFS isn't an FND while there is no diagnostic biomarker. Even then, then there are examples of people with clearly physical ailments being diagnosed with a functional overlay, either because their physical diagnosis came after the FND one, or because a health professional thinks that they are complaining more than their physical condition warrants. Some of the published academic material on FND have suggested that things like being a young woman and having a stuffed toy while in hospital are signs of FND. It's pretty hard to argue against something so vague.
So, I personally prefer not to answer the question 'why isn't ME/CFS an FND?'. Instead I think it might be more useful to ask 'is there any benefit to anyone from classifying ME/CFS as an FND?'. There is ample evidence that the treatments that an FND practitioner prescribes - exercise, CBT, mindfulness - don't work. There is also ample evidence that putting an FND label on people results in many harms, including a lack of access to diagnostic tests, stigmatisation in the medical system, withdrawal of support from family who are advised by health professional to practice 'tough love', loss of trust in the medical system (which can have massive impacts such as unwillingness to participate in vaccination programmes), experimentation with expensive and risky alternative treatments, depression and suicide as a result of feeling a failure and/or not being believed, and disease exacerbation due to attempting to solider on. So, for the patient, the outcomes are, on average, negative.
For society, we have seen enormous amounts of money poured into FND research and clinical care that does not achieve anything more useful than might have been expected with no treatment and the passage of time. We are hopelessly unprepared to cope with the large increases in ME/CFS numbers due to covid-19. So, for society, the concept of FND appears to have involved a lot of kicking the can down the road, delaying properly addressing illnesses with unknown pathologies. That can have short term benefits, such as allowing people to go on about their normal lives not worrying about Long Covid ME/CFS - until of course they or their loved one gets it.
For the FND proponents, the concept is of course their source of income, reputation and, probably, feelings of superiority. There is a clear benefit to them from including ME/CFS, including Long Covid ME/CFS, in the FND bucket. For the insurance companies that fete the FND proponents, FND increases profits, by ensuring that people are classified as having a mental illness, with the lower payouts that go with that. As for society, that's creating problems later, but insurance executives interested in bonuses probably aren't thinking long term.
Last edited:
Jonathan Edwards
Senior Member (Voting Rights)
As Hutan has indicated this may in a sense be a question we cannot really pose or answer usefully.
One answer that comes to mind is that we have no reliable evidence it isn't but then we have no reliable evidence it isn't due to aliens. We have reliable evidence it isn't due to mobile phones because it happened before mobile phones but that doesn't mean we should expect to have evidence it isn't due to loads of unascertainable things that have always been unascertainable.
But there is an interesting inconsistency in the question as posed above. ME/CFS is a syndrome diagnosis - a clinical outcome that we have reason to think might have a similar cause in many cases but without any commitment to what the cause might be, or how many or just how similar. FND appears to be a causal diagnosis - an illness due to bad repressed thoughts. (Of course the patients are mostly told something else, that it is a brain loop like a computer bug or something.)
So the question becomes 'What is the evidence ME/CFS is not [due to bad thoughts] or [due to bad thoughts-like]? You can't ask that. You can ask if a coupé is a car but not if a coupé is [electric car-like]. ME/CFS and FND illnesses might be like each other in terms of similar appearance but that isn't the issue. The question would be 'is the cause of ME/CFS like bad thoughts?' Everything becomes meaningless, largely because the FND people don't have any evidence of the bad thoughts anyway.
MeSci
Senior Member (Voting Rights)
I hope this is the right place for this:
Devon woman staging an exhibition to raise awareness of Functional Neurological Disorder
https://www.itv.com/news/westcountr...hibition-to-raise-awareness-of-rare-condition
A Devon woman who was struck down with a neurological condition says art has become a therapy to help her get on with her life.
Kirsty-Ann Johnstone was on a barefoot charity walk in October 2020 when she thought she was having a stroke.
Rushed to hospital she was diagnosed instead with Functional Neurological Disorder (FND), a condition which mimics the symptoms of a stroke as well as Parkinson's and MS.
She told ITV News West Country: "By the time I got to hospital, I was struggling to speak at all.
"And it affected all my left side, so it was really difficult to process what was happening."
More at link
Devon woman staging an exhibition to raise awareness of Functional Neurological Disorder
https://www.itv.com/news/westcountr...hibition-to-raise-awareness-of-rare-condition
A Devon woman who was struck down with a neurological condition says art has become a therapy to help her get on with her life.
Kirsty-Ann Johnstone was on a barefoot charity walk in October 2020 when she thought she was having a stroke.
Rushed to hospital she was diagnosed instead with Functional Neurological Disorder (FND), a condition which mimics the symptoms of a stroke as well as Parkinson's and MS.
She told ITV News West Country: "By the time I got to hospital, I was struggling to speak at all.
"And it affected all my left side, so it was really difficult to process what was happening."
More at link
Maybe I'm the answer to the question. I had a psychological evaluation as part of extended sleep research. DSM-3 and DSM-4 and what seemed to me a specialized psycho-somatic test, all written tests, and an evaluation by a psychologist. This was in 1996, DSM-5 didn't exist yet. (Lucky me?)
Outcome: "No disorder could be found that could cause or maintain the complaints".
I had, just one, CPET, 1 min 26 AT and just 40% predicted VO2max and a normal tilt-table-test; no OI. Though later tested by drs. van Campen, Visser with Doppler and tilt-table my CBF dropped 25%, so I did have OI.
I'm a 'certified 'ME/CSF patient without FND.
I don't think even biomarkers would necessarily rule out FND as the cause. Biomarkers only need to satisfy the condition of if-and-only-if, and they don't have to explain ME/CFS. We'll need a proof of something that explains ME/CFS to preclude FND once and for all. A proof of non-FND theory, in other words. No idea when that might be. Evidence for many theories out there are as poor as FND.
That's a sad story.
The following paper says there isn't one particular part of the brain that causes neurogenic stuttering and even a small lesion can disrupt the neural network producing fluent speech. That suggests to me that neurogenic stuttering might easily be mis-diagnosed as an FND.
Neurogenic Stuttering: Etiology, Symptomatology, and Treatment, 2021
Table 3 in that paper supposedly differentiates between neurogenic and psychogenic stuttering, but does note that the indistinguishability between the two types makes diagnosis difficult. Identifiers of psychogenic stuttering include:
It looks to me as though if you have a history of psychological issues and sound a bit different to what the clinician thinks neurogenic stuttering should sound like, you are more likely to get a diagnosis of psychogenic stuttering.
Last edited:
This post has been copied and following discussion of FND moved from:
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
A member has reminded us that Professor Sarah Tyson has co-authored publications on FND.
The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder
We have a thread on the first one here. It costs USD65 to access the article for 48 hours.
Sarah Tyson is the senior author on that one, as she is on this one:The management of patients with functional stroke: speech and language therapists’ views and experiences
That means that she is mentoring a new generation of people in FND approaches.
Both studies were funded by the NIHR.
It is very difficult to understand what the MEA was thinking in using precious donated funds to support an FND researcher to produce an ME/CFS clinical toolkit for NHS clinics, not least when the researcher clearly has access to NIHR funding.
UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
A member has reminded us that Professor Sarah Tyson has co-authored publications on FND.
The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder
We have a thread on the first one here. It costs USD65 to access the article for 48 hours.
Sarah Tyson is the senior author on that one, as she is on this one:The management of patients with functional stroke: speech and language therapists’ views and experiences
That means that she is mentoring a new generation of people in FND approaches.
Both studies were funded by the NIHR.
It is very difficult to understand what the MEA was thinking in using precious donated funds to support an FND researcher to produce an ME/CFS clinical toolkit for NHS clinics, not least when the researcher clearly has access to NIHR funding.
Last edited by a moderator:
JellyBabyKid
Senior Member (Voting Rights)
I have just looked up this thread, and am physically shaking with anger at this whole FND approach.
This. Questions need asking, very firmly.
How did MEA decide that an FND researcher would be the best fit for this work?
How is this allowed to continue?
I have just seen this letter linked on the above thread, co authored with Dave Tuller and am now very confused indeed
Jonathan Edwards
Senior Member (Voting Rights)
I don' think that we should be judging people by what they study, though, @Hutan.
Sarah worked in rehabilitation and would have come across patients with the diagnosis of functional stroke - as the paper says.
I have only looked at the abstract but it looks pretty good. This is a situation where qualitative research is appropriate - in assessing the scope of a practical clinical challenge.
The gist of the paper is ' we all see these patients, the situation is terrible because of stigma and because we have no idea what we are doing because we had no relevant training and nobody seems to know enough to provide any guidance. '
Honest and to the point.
Jonathan Edwards
Senior Member (Voting Rights)
Whatever one might think about the diagnosis of FND there are people who have problems that at present get put under that heading because nobody has a clue where else to put them. Some of them have symptoms that look like stroke but clearly do not have the upper motor neuron problems that are the basis of stroke. For instance they may have no increase in tendon reflexes, which is easily demonstrated objectively. SO the conclusion has to be that the cause is some subtle change in brain function not associated with the structural changes of stroke.
It is quite inappropriate to link that to conversion disorder but that isn't Sarah Tyson's fault.
I spent my life having to refer to patients as having 'osteoarthritis' while, as a connective tissue scientists, knowing that this meant nothing at all - a bit like neurasthenia. But I had to use the term because otherwise I would have caused distress to patients when the GP had to explain to them that the rheumatologist didn't even believe in osteoarthritis ha-ha.
We can criticise people for bad science but not for making the best of a bad job.
It is quite inappropriate to link that to conversion disorder but that isn't Sarah Tyson's fault.
I spent my life having to refer to patients as having 'osteoarthritis' while, as a connective tissue scientists, knowing that this meant nothing at all - a bit like neurasthenia. But I had to use the term because otherwise I would have caused distress to patients when the GP had to explain to them that the rheumatologist didn't even believe in osteoarthritis ha-ha.
We can criticise people for bad science but not for making the best of a bad job.
JellyBabyKid
Senior Member (Voting Rights)
Thank you for the clarification @Jonathan Edwards and apologies for rushing to judgement.
If this diagnosis is helpful to some people, does it lead to suitable treatment?
My concern is when rehab is a hammer and everything is a nail and where FND is used as a full stop, not a comma and further investigations are prevented because of the label.
I think I struggle with this because of the silo-ing of medicine. There don't seem to be links between the specialties where this might be helpful for pwme and pwlc. One specialty gets to say; we don't have an answer, so we just park people in this medical cul de sac.
As someone with an overdeveloped sense of fair play and having lost many years to this illness I find it hard to see the point of the FND diagnosis if it doesn't add anything useful for our specific category, and actively prevents curiousity.
If it was that, that would be ok. But it also calls for this
in a situation where actually no one knows enough to provide any guidance. Feelings of uncertainty in the clinician are the main protection a person with disease that can't be cured by happy thoughts has against an inappropriate FND diagnosis.the abstract said:
The abstract suggests that HCPs feeling uncertain about how to manage patients that possibly have FND and referring them on to someone else is a very bad thing. As I say, that uncertainty might be what gets someone in front of a specialist who knows enough to work out what is really wrong.the abstract said:
The abstract suggests that there is information to give about FND that is clear and honest, and specifically, that there is effective treatment. I have seen no evidence to support the idea that there is effective treatment for FND's (and let's not forget that ME/CFS is typically categorised as an FND.)
And would that subtle change in brain function be occurring because of something else happening, like the immune-related processes of the sort discussed in the NIH paper?
I'd forgotten till I read this thread that Sarah and I had a letter together. That came about because there were two drafts of letters being drawn up by a group of about eight or ten--and I can't remember the topic now. And we ended up splitting into two groups and Sarah joined my letter rather than the other one. But we didn't have any discussion beyond that.