World FND Month - APRIL 2020 - Functional Neurol...

Functional Neurological Disorder - FND Hope
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World FND Month - APRIL 2020

hope4fnd
hope4fndGroup Admin

We have learned in ou the 8 years of Awareness programs that

1. A day of FND highlight= remind patients of their disorder

2. A week FND highlight= strong results in awareness

This year we present a full month;

April 2020 WORLD FND MONTH

to spotlight, and educate FND in all corners of the Globe!

Be Part of the Global FND Movement!

WORLD FND MONTH

APRIL 2020

#FNDaware #FND2020 #LetsTalkFND

fndhope.org/fndaware/

13 Replies
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Thank you for this. My daughter was diagnosed a few years ago and to raise awareness that this is a real thing will stop people thinking it is "put on"

Where's the part about calling out bad practices when this diagnosis is made on the basis of confirmation bias, normal scan results being used to prove the dx to patients and their doctors, people being asked to self-diagnose, people being dx'd with FND because they don't have dementia (that one really gets to me since the person who was told that has vestibular migraine), cases of PTSD being missed etc etc?

Hidden
Hidden
in reply to 210272

And where’s the part about serious underlying systemic diseases and neuro vestibular disorders plus small fibre polyneuropathy all being missed over and over again in favour of diagnosing unsuspecting patients with FnD?

The world has far, far bigger worries to deal with right now than raising awareness for and paying NHS neurologists to reinvent Freud.

210272
210272
in reply to Hidden

Yep - plus people with CSF leaks are getting psych labels too, prior to or following their biomedical diagnoses. Ditto people with just about every other recognised condition under the sun. Some people with MdDS in the States are told they will only get health benefits if they accept a 'conversion disorder' diagnosis.

I'm not entirely sure that the policy of disregarding the info in the physical notes when making a diagnosis of a core psychiatric disorder is a good one.

Hidden
Hidden
in reply to 210272

I think, from your posts, we both feel only too sure that this is a profoundly unethical policy that does far more harm than good.

210272
210272
in reply to Hidden

Yep. I'm also not clear about the policy around using the diagnostic process re FND as treatment. At what point are people thought to have FND empowered to give their fully informed consent for that?

Hidden
Hidden
in reply to 210272

The thing is that if a doctor diagnoses cancer and the patient goes into a state of denial about this then it will remain the medical diagnosis on their records no matter how much the patient rejects this. This is because cancer has been medically evidenced by scans and blood work or tissue samples so it exists.

But FND is actually the opposite kind of diagnosis because it just cannot be medically evidenced no matter how much the patient wants to tell the sceptic that it can and has. It remains a diagnosis of speculation with psychologists and psychiatrists (eg Perez psychiatryadvisor.com/home/...) claiming it as within their remit and some neurologists such as Stone erroneously claiming it as one of theirs.

Neurologists think it’s a diagnosis that they can prove by use of certain tests called Hoover’s sign, tremor entrainment and Romberg. But these tests haven’t been approved by the wider scientific community yet so we only have some neurologist’s word for their diagnostic efficacy. And there are neurologists such as Anne Louise Oaklander and some in UK who feel this diagnosis is unethical and embarrassing to their professional reputations.

Other neurologists ignore these tests and diagnose it simply because they can. Patient denial simply entrenches the neurologist’s perspective and often results in a break down in trust between doctors and patient communities. Try the huge Thyroid UK HealthUnlocked community here for evidence of this.

With the Covid 19 pandemic this is a dangerous state of affairs. We need to be able to trust the medical profession more now than ever before. There is enough uncertainty over a biomedical disease currently sweeping across the world, causing devastation to already beleaguered healthcare systems.

If people are immune compromised and vulnerable they need to be able to trust their bodies and their doctors to tell them when to self isolate. Health anxiety is now a world wide state of affairs - sweeping supermarket shelves clear. We need to be told that it’s natural to tremble and have body jerks - a basic animal response to danger rather than functional. Appropriate responses to symptoms is essential and blaming everything on diagnosed FND means people may well ignore important signs and symptoms.

Don’t keep telling people that this is not an important response to danger but is due to our software malfunctioning please! It’s called an appropriate fight or flight response. Post viral fatigue is real and will likely effect many more people than ever before, including the young. PTSD is real and having it misdiagnosed as FND will only worsen the trauma for some and make those who don’t recover feel like failures.

We can’t have ME/ CFS being misdiagnosed as FND as has been happening too often. Viruses can leave medical and psychological damage in their wake and that’s a fact. This isn’t a conversion disorder - it’s the physical aftermath of having a virus.

So FND surely now has no place in medical parlance? Unlike with Covid 19, Diabetes or Cancer or cardiovascular disease etc, this FND remains at best a very controversial diagnosis and the patient community who accept it will are accepting the speculative - not a proven biomedical diagnosis. But a misdiagnosis carries very serious implications - especially now.

So before FND month (hey rare disease day is just a day - how is a whole month of awareness raising for FND being paid for?) please can someone tell me whether or not FND is a psych diagnosis or a neurological one? And what happens if a course of CBT and physio doesn’t work? Exercise programmes can do harm to people have ME/ CSF following a virus.

And if FND treatment does work for some then maybe there wasn’t a lot wrong to begin with? So have some of the medical community turned to faith healing in absence of hard medical evidence perhaps? Perhaps these doctors with functional agendas need to be reassigned and retrained to work with patients with infectious diseases for a reminder of what is real and what is not.

“Fear is contagious” according to an ME consultant on the radio. My own fear is of not of getting cancer or Covid 19 - it is of doctors misdiagnosing me again with a speculative disorder, which I know from bitter experience, will prevent me from accessing the help I need.

Above all I fear not being believed or being able to trust my own instincts or the medical profession because I’ve been brainwashed by medical professionals who were handsomely paid to gaslight me.

210272
210272
in reply to Hidden

If patients thought to have FND don't report having 'dissociative seizures' in clinics, apparently they are asked to complete a questionnaire that shows they do have these. And if someone says they don't think they have conversion disorder they are told that denying having conversion disorder is a symptom of conversion disorder.

My feeling is that all the recent and upcoming attention about FND will lead to further diagnostic inflation and more conditions like migraine being missed which means that data will be lost to research.

As for categorisation, the content providers/thought leaders re FND do recognise that this is a problem.

I find it interesting that people are being compared to computers with all the talk about FND being a hardware/software issue. I wonder if they would conceptualise a computer with malfunctioning hardware/software as having a core psychiatric disorder and, if they wouldn't, why they think it's ok to do that with people.

Hidden
Hidden
in reply to 210272

It would be useful if one or more of the main proponents of FND could reply, in plain English rather than patronising pseudo scientific gobbledygook, to our points here.

Meanwhile their lack of direct communication or updating of their neuro symptoms website with the latest publications claiming FND as a core psychiatric disorder - seems to speak volumes. Is it a core psychiatric condition, as Perez et al claim, or not? If not then where do Stone et al stand on this matter and how do they propose refuting this claim?

And in relation to this post - how can the FND community attempt an awareness raising month until these crucial questions and differences in opinion between the respective camps are answered with complete honesty and clarity? People diagnosed with FND deserve this surely?

210272
210272
in reply to Hidden

I'm also not sure what the "so-called 'positive signs'" are - that remains a medical mystery to me.

I forgot to mention the incredibly bad practice of drs being told to disregard the information from the physical notes when making this diagnosis and being told to say 'I believe you, why don't you believe me?' if someone questions this dx. Do you condone passive/aggressive bullying and dangerous practices, hope4fnd?

Hidden
Hidden
in reply to 210272

For research results on the consequences of misdiagnosis of non organic disorders please read: academic.oup.com/rheumap/ad...

I am still uncertain about my neurologist when it comes to my diagnosis, but I have to say I have been very fortunate that my PT/OT have really worked to understand this disorder and they treat me as a patient with a physical disorder. My therapy is geared towards making my body stronger but also helping my brain access the proper pathways when I try to move rather than the malfunctioning ones. We are trying to make therapy mimic more natural movement rather than isolating muscles so strengthen them. When a movement is natural, my body will take over as it nothing is wrong but when I try to isolate the muscle group to exercise it, it is too weak. Once we realized that and I had this diagnosis, it has made therapy work so much better. The therapist and doctors could make sense of things that confused them in the past and I no longer felt like I was being treated as a mental case. I wish everyone could find the kind of acceptance and support I have found from my medical team.

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