Mark Edwards: What relationship do stressful life events, neglect & abuse have with functional neurological disorder (conversion disorder)?

Cheshire

Cheshire

Senior Member (Voting Rights)
The analysis suggests that adverse experiences both in childhood and adulthood are associated with the development of functional neurological disorder. However, there was considerable heterogeneity both in the nature of the adverse experiences and also if they occurred at all, with a notable proportion of people reporting no such events.
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The idea that adverse childhood and later experiences have an influence on risk of developing (mental) illness is not a new one. For example, rates of adverse events in people with schizophrenia and depression are high. However, in functional neurological disorder these events have seemed to morph from risk factors/associations to the cause. This has had a number of negative consequences:

  1. Firstly, it suggests that diagnosis requires the presence of these factors. Under previous iterations of DSM it was not possible to make the diagnosis of conversion disorder without there being a “psychological formulation”. This illogical situation led to some patients being passed between neurologists and psychiatrists in an anti-therapeutic game of ping pong, with neurologists declaring the symptoms to be “non-organic” and psychiatrists declaring the patient to be “psychologically well”.
  2. Second, it suggests that the only treatment that will help is one that is directed towards the uncovering and resolution of underlying traumatic experiences. In contrast, treatments that work at the level of how symptoms are produced, delivered by psychologists, physiotherapists, occupational therapists were not prioritised or viewed as legitimate or valuable.
  3. Third, it subsumes the reality of the physical symptoms experienced by the patient within another phenomenon (past trauma) as if the symptoms are not a thing in their own right, and, in a sense, are not real.
Importantly, this paper is not an excuse to throw out the idea of an association between adverse life events and functional neurological disorder; rather it calls for us to consider the mechanism of the association and to understand how this should influence treatment (and even prevention). It supports the rebalancing of diagnostic approach, explanation and treatment that has been promoted in recent times and (at the very least) supports allowing the disorder to be classified in ICD-11 in the neurology and psychiatry sections. However, as the authors point out, the hope would be that in the end there would be a merging of these categories to one that recognises the indivisible nature of brain and mind.
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https://www.nationalelfservice.net/...al-neurological-disorder-conversion-disorder/

Reminder: Mark Edwards is leading an imaging study on ME/CFS to see if a common mecanism can be found with Functional neurological disorder.
He has also (successfuly) promoted the idea (with Jon Stone) that psychological symptoms should be withdrown from the requirement of FND in DSM 5, making it the one and only psychiatric diagnosis without any psychiatric symptoms (while at the same time vague symptoms were added to the definition of somatic stress disorder (not sure of the name here).
 
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On the DSM 5 piece I have some major concerns:

Firstly, it suggests that diagnosis requires the presence of these factors. Under previous iterations of DSM it was not possible to make the diagnosis of conversion disorder without there being a “psychological formulation”. This illogical situation led to some patients being passed between neurologists and psychiatrists in an anti-therapeutic game of ping pong, with neurologists declaring the symptoms to be “non-organic” and psychiatrists declaring the patient to be “psychologically well”.
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So one has the scenario where a patient isn't suffering from depression, anxiety or some other psychological condition. But the neurologist also cannot find a cause for their symptoms. That is a real problem and I agree that bouncing between the two specialities helps nobody. However, I don't believe the solution is simply to say 'meh, default them to the shrink then.' There doesn't seem to be any consideration of (a) whether to re-consider a differential diagnosis (ME/CFS aside, I'd want to be 500% sure something autoimmune was ruled out here given how hard it is to diagnose in many cases; nor (b) that perhaps it is the psychiatrist who is right here (!) and not the neurologist. The default seems to be if the neurologist cannot find anything from their tests then it is psychiatry that is wrong and the patient must be mentally unwell.
 
Nancy Blackett said:
This person, a patient, was apparently diagnosed with FND and ME, and now calls it FND/ME. Worrying. He has a site

https://fndme.org.uk/info/history
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Odd that there is very little information on the site other than links out to news on other sites. i couldn’t see anything that says who’s site it is or their story where in the U.K. they are. Also they have page asking for fundraising. The stuff about ME seems to be ok anti GET article for eg and stuff saying it isn’t Psychological but using FND........
 
From the FiND ME Twitter page, January 2017, it says the site owners are Andy Bristow and Lewis Henshall. They say they will launch a campaign on FND. That was January 2017. There is a FB Page too.

The site name FiND ME sounds like its about finding ME, but stands for FND/ME.
 
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Regarding the article in the OP... unless the control group is made up of people who have another disease, i dont care which, but any chronic disease (pref neuro/autoimmune), then the results of studies into adverse life events & their correlation/association with any disease/condition are utterly unreliable. It seems well indicated that adverse life events increase likelihood of illness. Fullstop. So without controls for other illnesses there is no way of knowing whether the correlation is with FND, or indeed with ME as they so often like to say, or actually just with illness itself.

Lets have a study of the prevalence of childhood trauma in say, ME/CFS, FND, MS, RA, Lupus, Mitochondrial Disease, & cancer. and we'll see. It's my very strong suspicion that rates will be the same.

Edited : for sense
 
Nancy Blackett said:
This person, a patient, was apparently diagnosed with FND and ME, and now calls it FND/ME. Worrying. He has a site

https://fndme.org.uk/info/history
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They seem to not know the difference between FND & ME, they list them all as the same thing & yet repeatedly use the word 'and' when describing them - ie "FND and ME". so, do they believe they are the same thing, or different. I agree with @adambeyoncelowe it looks like astroturfing. Or something done by people who are well meaning but dont really know what theyre on about.
I'm so fed up with people setting up websites to educate & raise awareness, who dont have their facts straight.:banghead:
 
When the blog said "studies with arguably more rigorous methods of life events ascertainment, a higher rate of adverse life events prior to onset of symptoms was found" I'd assumed it meant more objective measures of adverse life events, or prospective studies.

But the papers abstract says:

"An association with stressful life events preceding onset (OR 2·8, 95% CI 1·4–6·0) was stronger in studies with better methods (interviews; 4·3, 1·4–13·2)."

I'd have assumed interviews might have a higher risk of bias than questionnaires. I've only read the abstract, not the paper.
 
Esther12 said:
"An association with stressful life events preceding onset (OR 2·8, 95% CI 1·4–6·0) was stronger in studies with better methods (interviews; 4·3, 1·4–13·2)."

I'd have assumed interviews might have a higher risk of bias than questionnaires. I've only read the abstract, not the paper.
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An interview allows the interviewer to introduce their own bias.
 
I thought I would post the following to some thread on Mark Edwards. Wasn't sure what the best one is but this one came up in a search.
He is now working in a private clinic in Ireland:
https://www.hermitageclinic.ie/consultants/consultant-directory/dr-mark-edwards/
It could well be the case that he is only here for a day or two a week. It will be interesting to see how things work out. One person has just praised him on an Irish forum I'm on.
 
There appears to have been a lot of work done on making the diagnosis of FND palatable to patients and it has paid off. It is not unusual on forums nowadays to have patients saying they have finally found out what is wrong with them - FND which is a real disease where the hardware is intact but the software doesn't work.

They are so happy it is hard to know what to say. Personally, I would feel foolish if no one told me that FND was another way of saying hysteria when I finally found out but I do not want to make anyone feel bad or forced off a forum.

It is a situation we should not have to face and I resent it very much.
 
Mithriel said:
There appears to have been a lot of work done on making the diagnosis of FND palatable to patients and it has paid off. It is not unusual on forums nowadays to have patients saying they have finally found out what is wrong with them - FND which is a real disease where the hardware is intact but the software doesn't work.

They are so happy it is hard to know what to say. Personally, I would feel foolish if no one told me that FND was another way of saying hysteria when I finally found out but I do not want to make anyone feel bad or forced off a forum.

It is a situation we should not have to face and I resent it very much.
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Perhaps there is an opportunity to create a document which uses FND own words but in a way that explains plainly what it is they are meaning and the document could be widely available through various online media.

I would say this might be a job where S4ME could contribute but that those carrying the bulk of the work could be from something like CBT watch or even Brian Hughes or (really not good at remembering who might be helpful here). No doubt David Tuller's work would be a good reference.

I really think that this specifically (that FND and it's hardware / software explanation) needs to have exposure to the light of critical review. I can understand why it would be accepted uncritically by people who have been medically marginalised. It's horrifying to know that this is just more medical gas-lighting of this illness population. Eventually the penny will drop for some of these people. And harm will have been done.

Anyway, I don't think I'm explaining myself particularly well but having FND more fully explained in a few succinct paragraphs would be really useful for people being given this diagnosis.
 
Snowdrop said:
I really think that this specifically (that FND and it's hardware / software explanation) needs to have exposure to the light of critical review.
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They themselves--Jon Stone etc--have published papers saying it's clear there are also "hardware" differences but they refuse to update the analogy. It's bizarre. And they have been arguing that the structural change associations are actually the downstream result of the functional differences. I wrote about this at some point earlier this year.
 
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