UK: Recruiting: Inflammation and brain function in Functional Neurological Disorder: implications for diagnosis and treatment: Study 1

Andy

Andy

Retired committee member
What is the purpose of this study?
This study aims to investigate Functional Neurological Disorder (FND). We are particularly interested in investigating the triggers and symptoms of FND. To do this we will ask you a series of questions during this online questionnaire. These questions will help us to ‘map’ FND symptoms and attempt to distinguish different types of the condition. It is hoped that we can use the results to develop a ‘scale’ of FND which will be able to identify types and severity in the condition. FND is a widely misunderstood condition and it is hoped that these results may help organisations to better support people with FND and may contribute towards better understanding in academic circles, health and social care settings and may lead to discussions of better treatment options.

Who are we looking for?
We are looking for over 600 people with FND to take part in this study. We are looking for an additional sample of those who are healthy (without an FND Diagnosis) and those with other long term, chronic health conditions who can act as a control sample. Participants must be over 18 years old.

Who is running this study?
This study is being conducted by Stephanie-Roxanne Blanco from the Psychology Division at Nottingham Trent University. This study is part of my PhD research project titled “Inflammation and Brain Function in Functional Neurological Disorder: implications for Diagnosis and Treatment”. It is being supervised by a senior lecturer from the department, Professor Alexander Sumich and two additional supervisors, Christina Howard and Suvo Mitra. You are welcome to contact any of us, using the details at the end of this page, if you have any questions regarding this project.

https://ntupsychology.eu.qualtrics.com/jfe/form/SV_26lkJWrKuqUqSzk

https://twitter.com/user/status/1728472785725321710
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From the patient information sheet, it's a psychology study digging for pre-FND psychological factors and life events, presumably in order to attibute FND symptoms to these psychosocial factors.

Given that it's a self selecting online sampling method for a PhD, no doubt it will be analysed in the usual 'bung the data in a stats package and cherry pick something you can write a paper about' methodology.

Any conclusions about differences between people with FND and people without, and psychosocial causes of FND derived from such a study will be useless because of the inappropriate sampling method.

I wish there was a way to stop universities giving their students PhD's based on such shoddy research methodology. It's an abuse of the goodwill of patients and not scientific.
 
I can't see where inflammation is part of this study. According to her Twitter posts the researcher has FND and has recently given a TEDx talk on her personal experience and thinking about FND —

"The way the brain functions is shaped on our own experiences. The brain is actually that complex that it is relatively easy for it to become dysfunctional."

"When I was 14 years old I caught the flu [...] for once it was a legitimate reason not to have to go to school." "Before I recovered from the flu I developed glandular fever."

"Before I recovered I was paralysed from the neck down within two months of developing glandular fever. [...] there was no explanation as to why."

Interspersed background about adolescent psychological development.

"First I was diagnosed with chronic fatigue syndrome and then medically unexplained symptoms - that's not a diagnosis at all."

Comments about all tests being normal.

"It took me five years to receive an official diagnosis and that diagnosis was functional neurological disorder or FND."

"This is very common. In fact FND is the second most common diagnosis in neurology settings."

"I am still working on connecting my body with my brain again."
 
I can accept that most of these people mean well but
SNT Gatchaman said:
"Before I recovered I was paralysed from the neck down within two months of developing glandular fever. [...] there was no explanation as to why."
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From the CDC website,
"EBV infection can affect a person’s brain, spinal cord, and nerves.

It can cause conditions such as—

Viral meningitis (swelling of the tissues that cover the brain and spinal cord)
Encephalitis (swelling of the brain)
Optic neuritis (swelling of the eye nerve)
Transverse myelitis (swelling of the spinal cord)
Facial nerve palsies (paralysis of facial muscles)
Guillain-Barré syndrome (an immune system disease)
Acute cerebellar ataxia (sudden uncoordinated muscle movement)
Hemiplegia (paralysis on one side of the body)
Sleep disorders
Psychoses"
https://www.cdc.gov/epstein-barr/hcp.html
 
Recently in a court case in the US for a family seeking damages in relation to a hospital treating a minor, an expert physician testified that FND was the new word for conversion disorder.

Now I have no idea why this co-investigator truly wants to study FND or her own ‘conversion disorder’, and bring 600 other unfortunate people to traumatize further…
 
Milo said:
Recently in a court case in the US for a family seeking damages in relation to a hospital treating a minor, an expert physician testified that FND was the new word for conversion disorder.

Now I have no idea why this co-investigator truly wants to study FND or her own ‘conversion disorder’, and bring 600 other unfortunate people to traumatize further…
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Most FND papers explicitly mention it. The whole pretense that it means anything different is something to behold given this. There's a backdrop of "we've changed" to it, but it's the same old here as well.
 
rvallee said:
Most FND papers explicitly mention it. The whole pretense that it means anything different is something to behold given this. There's a backdrop of "we've changed" to it, but it's the same old here as well.
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I suspect this belief that psychological experience can change reality, in this case generate physical/biological symptoms, is a design fault in the human psyche. Lots of people are prone to go along with ‘if you believe enough you can change the world’, it is something populist politicians and self-help gurus tap into, the idea that you just have to believe enough.

It always surprises me that there are on social media people who believe their ME arises from previous experiences or their own personality. Obviously how we view the world can impact on how able we are to make use of opportunities or how we fail to take opportunities, so it may have some evolutionary advantage, but for scientists to indulge in unevidenced beliefs about psychological causation is totally unacceptable.
 
Mind over matter is the most insidious and tenacious belief I have ever seen in humans. We desperately want to believe that we can control the world to a far greater extent than we really can. It corrupts even the most intelligent, educated, decent, and experienced of people. Nobody is immune to its seduction.

It underlies so much of how we frame our worldview.

I understand the urge. There is no lack of truly horrible things in this world, that happen every day to innocent people, for no obvious reason. Certainly no obvious moral reason. They don't deserve it in any meaningful sense.

But it is a delusion. We have a very limited capacity to change the world in which we find ourselves. Which is why it is so important that we are realistic about what we can change and what we can't.
 
Sean said:
We desperately want to believe that we can control the world to a far greater extent than we really can. It corrupts even the most intelligent, educated, decent, and experienced of people. Nobody is immune to its seduction.
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Today there was a discussion elsewhere about an extremely large iceberg now moving freely after initially detaching from Antarctica 30 years ago. In the top-voted comment, someone asked why we couldn't simply tow it back and anchor it to Antarctica. It was pointed out that it weighs a trillion metric tonnes and is 3x the size of New York City.
 
SNT Gatchaman said:
Today there was a discussion elsewhere about an extremely large iceberg now moving freely after initially detaching from Antarctica 30 years ago. In the top-voted comment, someone asked why we couldn't simply tow it back and anchor it to Antarctica. It was pointed out that it weighs a trillion metric tonnes and is 3x the size of New York City.
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So you are saying that we can do it, we've just got to believe strongly enough that it is possible?? ;)
 
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