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

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

 

https://twitter.com/user/status/1533725441898717184


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

 

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.

 

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.

 

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

 

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.

 

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

 

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.

 

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.

 

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.

 

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.