FND organisations and conferences

DokaGirl said:
FND. This diagnosis is given after a very thorough work up including an MRI brain scan, and other very extensive testing, right?
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Pathophysiology of FND
7:00 – 7:50 am EDT Breakfast Workshops
  1. Neuropsychometric Assessment in FND
    Daniel Drane, PhD & Laura H. Goldstein, PhD, MPhil, FBPsS
  2. Conversation Analysis in FND
    Markus Reuber, MD, PhD, FRCP
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I am reminded of the diagnostic guidance given for one of the functional disorders that suggested that turning up at the hospital with a soft toy was a significant sign. (sadly, not joking)
 
livinglighter said:
MRI and brain scans don't rule out subtle brain damage though. But clear results also give way for a clinician to stop testing and diagnose FND.
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I suspect that what is typically diagnosed as "FND" will be shown to have a significant rate of generalised or regional neuroinflammation. Newer neuroimaging techniques (PET-CT with activated glial mitochondrial tagging, MRI with hi-resolution diffusion weighted activated glial conformational analysis etc) are coming down the line. They will start to clinically demonstrate what was occult to physical examination and structural brain imaging, and therefore medical opinion; even as the patients repeatedly presented their accurate accounts of symptoms.

We will overturn this unevidenced nonsense dogma. The idea that relabelling Freudian conversion disorder and having a performative medical conference on it to evoke credibility, this far into the 21st century is an embarrassment. Those involved in the programme ought to be ashamed.

Somewhat ironically, there is a good possibility that functional neuroimaging will be its undoing.
 
SNT Gatchaman said:
We will overturn this unevidenced nonsense dogma.
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I hope so. But providing evidence of neuroinflammation alone won't make these FND people go away.

Why do you have neuroinflammation? - because you haven't yet dealt with childhood trauma perhaps? An anxious personality?

What is the treatment for neuroinflammation? Talking therapies to calm the nerves. Mindfulness courses.

Objective measures of neuroinflammation don't improve with talking therapies? (flicks through notes on CBT for ME/CFS...)
Oh, the patient didn't engage with the therapy properly. The therapist didn't do the therapy properly. The study was too underpowered to provide a statistically significant result.
It did work in this post hoc defined subset of patients aged between 40 and 50 and whose favourite colour is purple and who are perfectionists.
We need more money to tweak the talking therapy to make it work better and to identify more subsets for who it works best.
 
Hutan said:
I hope so. But providing evidence of neuroinflammation alone won't make these FND people go away.

Why do you have neuroinflammation? - because you haven't yet dealt with childhood trauma perhaps? An anxious personality?

What is the treatment for neuroinflammation? Talking therapies to calm the nerves. Mindfulness courses.
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It's super pessimistic, but I think FND is terrible news, especially for pwME/LC.

I understand ME lacks research, but within clinical practice, something physical has to be agreed upon otherwise, it leaves patients vulnerable to receiving the diagnosis when they need serious physical medical care.

I spoke to a CNS condition charity who told me ME/CFS is FND, and FND is said to be caused by experiencing a surge of strong emotions during a stressful/traumatic event. Yet, stressful/traumatic events can also trigger things like neurogenic shock, which can cause ME-like symptoms. One cause is physical, the other is not, and each takes the patient down completely different medical care pathways.
 
SNT Gatchaman said:
I suspect that what is typically diagnosed as "FND" will be shown to have a significant rate of generalised or regional neuroinflammation.
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I actually doubt this. I think it unlikely that the sort of change now being given the buzzword 'neuroinflammation' will turn out to be the cause of anything much. Glial activation occurs in most forms of brain pathology as a secondary process and may not contribute much to clinical problems. The sort of inflammation that causes clinical problems has been easy enough to see on imaging for decades now.

I think it much more likely that clinical problems currently called FND are indeed due to unknown functional changes in brains without structural change and we are going to need completely new methods to track down what is going on.
 
It's strange because I have an old clear MRI, which has been used to suggest I have FND. However, according to FND proponents, I'm unlikely to have FND due to my other hallmark symptoms. So there can very well be something wrong that appears as ME but doesn't show up in MRI and also shouldn't be defined as FND. :confused:

https://headinjurysymptoms.org/symptoms/
Alarm symptoms
If you experience any of the following symptoms in the days after the injury, you should visit the Emergency Department as soon as possible:

  • Loss of consciousness
  • New deafness in one or both ears
  • Loss of balance or problems walking
  • Any weakness in one or both arms or legs
  • Any vomiting
  • Clear fluid coming out of your ears or nose
  • Drowsiness when you would normally be wide awake
  • Increasing disorientation
  • Problems understanding or speaking
  • Blurred or double vision
  • Inability to be woken
  • Bleeding from one or both ears
  • Any fits (collapsing or passing out)
  • Severe headache, not relieved by painkillers such as paracetamol
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https://headinjurysymptoms.org/about-2/

About us

This website was developed by a team of clinicians and researchers from the Department of Clinical Neurosciences and Department of Rehabiltation Medicine, NHS Lothian, Centre for Clinical Brain Sciences, University of Edinburgh, UK in collaboration with the Interdisciplinary Center Psychopathology and Emotion regulation, University Medical Center Groningen, the Netherlands.

We aim to promote knowledge and understanding of mild head injuries and provide practical tips and tools for recovery. The website is free and nonprofit.
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I think we need to understand the basis of FND and symptoms not usually associated to ME to ensure we can provide just reasons for why investigations shouldn't stop following clear brain imaging.

[Edited: My bolding]
 
There is a general problem in medicine caused by the use of cut off points in testing. Most of the time it works well but it is hard to keep in mind that it is an interpretation of biology and must be used alongside clinical judgement.

With laboratory testing there is an unspoken belief that the patient will get another test if they still do not feel well so any mistake will be corrected but nowadays one test may be all you get. My pregnancy test was negative, to my great dismay, but it soon became obvious there was a baby growing. I dearly wanted to be pregnant so it would have been easy to say it was psychological until I went into labour if we did not have scans!

Too often a negative test is taken as proof that illness does not exist but biology is massively complex. I was told I was not hypoglycaemic (and that I had been wasting everyone's time by wanting the test. Apparently sick people went hungry because of me) because the reading of 4 was normal. Yet 3.95 is classed as hypo. The line between disease and somatisation is very fine indeed.

Brain testing is still in its infancy so there is no way medicine can say categorically that everything about brain cells is already known. The recent paper which declared longcovid did not exist because the standard run of tests were negative is a good case in point.

If biology goes wrong there is a reason within the body and to fob it all off as distorted thought is no different from blaming it on demonic possession.
 
Mithriel said:
With laboratory testing there is an unspoken belief that the patient will get another test if they still do not feel well so any mistake will be corrected but nowadays one test may be all you get. My pregnancy test was negative, to my great dismay, but it soon became obvious there was a baby growing. I dearly wanted to be pregnant so it would have been easy to say it was psychological until I went into labour if we did not have scans!
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Everything you have said is why anyone with ME who wants to seek medical care in the foreseeable future will need to understand what can be considered FND and what shouldn't.

Any doctor (likely a neurologist) serious about wanting to help will consider performing an MRI as a lot of ME/CFS symptoms are head injury symptoms. However, once you pass the acute sickness phase or you're not a trauma inpatient, a clear MRI increases the possibilities of an FND diagnosis, which appears to be one of the sexiest things going.

Patients may find themselves needing to state why more investigations need to occur if presenting with other 'alarming issues', which could also occur later down the line.

[Edtied to add more information]
 
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Random bits:

Some pwME may have pathology show up on MRI brain scans many years into their disease.

These brain scans may, or quite likely will be done for reasons other than ME.

Not being a physician, I marvel at how some doctors take risks. For example, a patient presents with symptoms indicative of brain injury, or a brain tumour, and yet in some instances no MRI brain scan is ever ordered. Is this because the patient is seen as less deserving? Are they in a stigmatized category? That is a very large group in itself.

I understand there are medical decision protocols, charts and pathways that must be followed when making decisions about testing. I am still amazed though at how willing some doctors are to take the risk that there is nothing to see neurologically with certain patients even though the patient advises of neurological symptoms consistent with some form of brain pathology.

It's my understanding that there has been for a long time, direction to not do extensive testing for patients suspected of having ME ("cfs"). What raises these suspicions? The female gender? The number of symptoms? The emotional state of the patient? All of the above and more?

Of course the BPS Movement has indicated the profile of a less worthwhile patient is female, with a long list of symptoms who also appears fairly concerned about their health.

Another circle: pwME are not worthy of being thoroughly medically tested, and because they're not thoroughly investigated, medicine finds nothing wrong, and reaffirms the stigma.
 
FND Society

Founding Members

(Includes Trudie Chalder, Jon Stone and Alan Carson)
https://www.fndsociety.org/about-us/founding-members

FND Action

Medical Advisory Board (2017)
Dr Richard Brown
Senior Lecturer in Clinical Psychology and Honorary Consultant Clinical Psychologist, University of Manchester

Dr Alan Carson
Consultant Neurologist and Honorary Reader, Western General Hospital, Edinburgh

Professor Trudie Chalder
Professor of Cognitive Behavioural Psychotherapy, Kings College, London

Professor Anthony David
Professor of Cognitive Neuropsychiatry and Vice Dean Academic Psychiatry, Kings College, London

Professor Mark Edwards
Professor of Neurology, St George’s University of London

Paula Gardiner
Neurospecialist Physiotherapist/CBT Therapist, Western General Hospital, Edinburgh

Jeannette Gelauff
PhD Research Fellow in Neurology, University of Groningen, Netherlands

Professor Laura Goldstein
Professor of Clinical Neuropsychology, Institute of Psychiatry, Psychology and Neuroscience, London

Dr Ingrid Hoeritzauer
PhD Research Fellow in Neurology, University of Edinburgh

Carrie Lumsden
Specialist Occupational Therapist, Community Rehabilitation and Brain Injury Service, West Lothian, Scotland

Dr Elizabeth Mallam
Neurologist, Southmead Hospital, Bristol

Glenn Nielsen
Research Fellow & Physiotherapist, St George’s University of London

Dr Timothy Nicholson
Clinical Lecturer & Consultant Neuropsychiatrist, Institute of Psychiatry, Psychology & Neuroscience, Kings College, London

Dr Wendy Philips
Consultant Neurologist, Addenbrooke’s Hospital, Cambridge

Dr Jason Price
Consultant Clinical Neuropsychologist, The James Cook University Hospital, Middlesbrough

Professor Markus Reuber
Professor of Clinical Neurology, University of Sheffield

Dr Jon Stone
Consultant Neurologist and Honorary Reader, Western General Hospital, Edinburgh

Dr Sumeet Singhal
Consultant Neurologist, Queen’s Medical Centre, Nottingham

Dr Valerie Voon
Neuropsychiatrist and Neuroscientist, University of Cambridge
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https://www.fndaction.org.uk/introduction-fnd-actions-new-medical-advisory-board/



 
Program is here, https://www.fndsociety.org/biennial-meeting/2024/program

Includes such delights as

What Makes a Good Therapy Candidate and Setting Up an Initial Treatment Plan
Sarah C. Lidstone, MD, PhD; Glenn Nielsen, PhD; Sepideh Bajestan, MD PhD; and Jason David Kreuzman, OTR/L

Treatment Barriers: Dealing with Pain, Fatigue, Avoidance, and Fear
Kasia Kozlowska, MD, PhD; Julie B. Maggio, Pt, DPT, NCS; Aaron D. Fobian, PhD; Christian Geroin, PhD; and Glenn Nielsen, PhD

When Patients Do Not Get Better
Alan J. Carson, MB ChB, MPhil, MD, FRCPsych, FRCP

Pain and Fibromyalgia and Therapeutic Considerations
Tereza Serranová, MD, PhD

What to do when FND Treatment Response is sub-optimal
Michael Dilley, MD, MRCPsych

Fatigue
Michael Sharpe, MD, FACLP

Psychosomatic Medicine
Peter Henningsen

A National Program in Denmark
Per Fink, MD, PhD, DMSc

Long COVID
Alan Carson, MD

Functional Dizziness: Pathophysiology
Nadine Lehnen, MD

 
Joan Crawford said:
FND society 2024 conference

https://www.fndsociety.org/

Includes the usual catch all of conditions, including ADHD and Autism too now as well. Not short on ambition.
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It’s really getting out of hand isn’t it?
These days.
Tut tut tut.
Remember back when? …
Yeah.
Adults with autism and or ADHD diagnosis didn’t compare notes on the internet.
Didn’t talk about their own struggles and isolation before diagnosis, making everyone want one.
Halcyon days….

Autism safety confined as a topic to children with some combination of various impairments (children, especially children with disabilities, not going to have the easiest time telling researchers what’s wrong with the quality of the research) with a subset of the “Male brained” boffin class cordoned off of into Asperger’s Syndrome, reassured they were the cream of the crop not like the others. While the number of females diagnosed was done on a limited quota basis, so as not end up with a problem with the whole Extreme Male Brain hypothesis (which sounds suspiciously 50s, 60s, 70s pop psychiatry, war of the sexes, feminine wiles, masculine urges, meets pop psyc 80s/90s marriage guidance book to me. But anyway…)

Oh boy….
Do not get me started on the ADHDers.
They were always a badly behaved bunch!
Trashing the classroom.
It only took a few bad apples to infect the whole internet. They’ve got girls all hyped up and distracted now too.
I don’t how we’re going to extinguish the flames on this bin fire the little vandals have set.
It’s a fucking disaster.
What’s that you might be able to offer some assistance?
I’m listening?
Umm I see what you mean.
It has potential….


The FND.
 
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